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Kelly Chase’s AML Treatment Update

Former NHL enforcer Kelly Chase was diagnosed with acute myeloid leukemia (AML) in November 2023.

About a year later, on November 8th, 2024, Chase shared the following update about his AML treatment on social media platform X (formerly Twitter):

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“I hesitated to say anything, but so many people are sending me notes, so here goes. Yes, I have a Round 2 with this punk called leukemia. With the support of these amazing doctors at the Siteman Center and all my friends’ prayers and support, we are hoping for a similar outcome as Round 1. I am ready to fight again and have a brother with a 100% bone marrow match. I truly am grateful for everyone reaching out. I got this.”
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Having a 100% match for a bone marrow transplant, also called a stem cell transplant, can help increase the chances of treatment success.

Click the button below to learn more about stem cell transplants, as taught by AML experts at HealthTree University.

Learn About Stem Cell Transplants for AML

Chase’s NHL Legacy

Kelly Chase had a notable NHL career spanning from 1989 to 2000, during which he played for the St. Louis Blues, Hartford Whalers, and Toronto Maple Leafs.

Throughout his 458 NHL games, Chase scored 53 points, including 17 goals. Due to his tough playing style, he is particularly renowned for accumulating impressive 2017 penalty minutes.

During 27 playoff appearances, he contributed two points, one of which was a goal, alongside 100 penalty minutes.

While Chase never won a Stanley Cup, he was honored with the King Clancy Memorial Trophy in 1998, which recognized his community involvement and leadership both on and off the ice.

Summary

Former NHL player Kelly Chase's experience with acute myeloid leukemia underscores the profound challenges and hopes that come with this cancer. His access to a perfect bone marrow match from his brother highlights the critical role of familial and medical support in treating AML. We wish Chase and his family the best during this difficult time.

Share Your AML Story

Do you have insights you would like to share with others in the AML community? We invite you to email aml@healthtree.org to share your story.

!AD!

Source:

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Former NHL Tough-Guy Kelly Chase Announces Heartbreaking Diagnosis
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The Diagnosis: A Sudden and Life-Altering Moment

In 2014, at the age of 59, James received a diagnosis that would change his life forever: acute myeloid leukemia (AML). A sore throat on a Thursday quickly progressed to severe fatigue. Within days, James could no longer climb stairs, and by the end of the week, he was hospitalized. His doctor, with a compassionate but serious expression, delivered the life-altering news: “Mr. Visser, you have AML. We need to start treatment immediately. We’ll begin treatment tonight.”

James described the experience as if he had been “t-boned by a semi-truck” at an intersection. His life, which included a 35-year career as a freelance photographer, was suddenly thrown into chaos. The weight of the diagnosis was immense, especially as his white blood cell count soared to dangerous levels, causing leukostasis—a condition that made his blood \"sticky\" and impacted his breathing and ability to move. Even his cognitive function had begun to decline, something his wife, Lynn, noticed before he did.

Despite the overwhelming circumstances, James found solace in the professionalism of his healthcare team. It was clear to James that his doctors had been here before, aware that they had just pulled the rug out from under his feet.

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Understanding AML: A Complex Disease

Most people have heard of leukemia, but James quickly realized that few truly understand what it entails. He learned firsthand how complex both the disease and its treatment were.

AML was no longer an abstract term; it was now an intimate part of James’s life. He had always been one to educate himself, and within a week, he and his wife dove into learning about AML, the necessary treatments, and what lay ahead. As promised, his treatment began immediately after his hospitalization, with a central line inserted into his chest and blood tests becoming routine.

The severity of his condition was daunting, but James trusted his doctors, nurses, and other healthcare staff. They explained the delicate balance between treating AML aggressively while not overdoing it, as the treatments themselves were toxic. His nurse called it “rescue therapy”—pushing James to the brink to pull him back from the cliff's edge. These hospital employees would turn into trusted friends of James and his wife as the weeks passed.

The Journey of Treatment: Stem Cell Transplants and Setbacks

As a photographer, James had many assignments in hospitals capturing moments for publications. Ironically, just before his diagnosis, he had been hired by the American Cancer Society to document a conference at the same hospital where he would now be treated. His work for the healthcare system suddenly took on a new meaning as he found himself as a patient and not behind a camera, now battling one of the blood cancers he had been documenting weeks before.

James's oldest son, Nick, who was in his last year of motorcycle tech school, happily volunteered as his transplant donor. The first transplant, however, ended in graft failure. Despite the setback, James didn’t fret—he again embraced the uncertainty, met it with acceptance, and trusted in his team. His doctor, Dr. Rizwan Romee, reassured him that while the graft failed, it wasn’t a relapse, and the team quickly pivoted to find a new donor.

James was fortunate that Be The Match found a 23-year-old full match from Baton Rouge who donated for his second stem cell transplant in February 2015. James was hospitalized more than 130 days in the 18 months after diagnosis, enduring a whirlwind of treatments, blood transfusions, and constant monitoring. His care team became a lifeline, guiding him through the uncertainty with dedication.

Finding Acceptance Amidst the Struggle

James’s story of resilience was punctuated by moments of acceptance and friendship. One of his most poignant memories was writing a message with Lynn for CaringBridge. He likened his journey to being put in a canoe without a paddle and thrust into white-water rapids with no control over the ride. “I had to rely on my caregivers to keep me from smashing into the rocks or plunging down a waterfall.” This metaphor resonated with his best friend, who sent him a beautiful wooden canoe paddle—a symbol of friendship and strength.

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Through these difficult times, James formed a close bond with Dr. Romee. Their relationship extended beyond the hospital, with Dr. Romee sharing a love of cameras and photography. “We talked more about cameras than AML,” James remembers. Even after Dr. Romee moved to Harvard, the two still text, maintaining the personal connection that helped James through the darkest times.

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Life with AML: Gratitude and Reflection

Ten years post-transplant, James is doing well. He lives with a bit of graft-versus-host disease, but reflects on the experience with profound gratitude. \"I’m not dead yet,\" he often says, quoting the Monty Python movie, finding humor in the gravity of his situation. He continues to be monitored, knowing that AML is never fully cured, but he faces life with a renewed sense of purpose.

James found solace in helping others. About three and a half years after his transplant, he started visiting newly diagnosed AML patients in the hospital, offering peer-to-peer support. He describes this as “life-saving,” both physically and psychologically. Having been in their shoes, he knew the power of connection during such an isolating experience.

James’ Message: Embrace the Ride

James’s advice to others facing similar challenges is to accept what you cannot control and let go. Much like his canoe metaphor, he encourages others to ride the waves, letting go of the fear that can overwhelm them. While the “potential for death was present throughout my bumpy canoe ride, it was never inevitable,” he believes; “it was just part of the ride.”

To explore more inspirational AML patient and caregiver stories, click here: AML Stories and Experiences

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Diane’s CLL Diagnosis

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Diane was diagnosed with chronic lymphocytic leukemia (CLL) on April 2nd, 2022. Months prior, she had received the COVID-19 vaccine booster, during which her body had a bad reaction. She decided to visit her doctor to get checked out. After running some blood tests, they found that her white blood cell count was high. Her primary care provider referred Diane to a hematologist-oncologist (blood cancer doctor) at the Life Span Cancer Center in Rhode Island. The hematologist-oncologist conducted a fluorescence in situ hybridization (FISH) test, confirming the CLL diagnosis. After visiting that doctor, Diane decided to seek a second opinion from a CLL specialist. Through personal research, she found Dr. Inhye Ahn at the Center for Chronic Lymphocytic Leukemia at Dana-Farber Cancer Institute in Boston, Massachusetts.

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Visiting a CLL Specialist

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Diane made the trip from Rhode Island to Dana-Farber Cancer Institute and met with CLL specialist Dr. Inhye Ahn. Diane stated that Dr. Ahn was very attentive and spent an extended amount of time answering her questions, going over test results, and explaining to Diane that based on her CLL type of trisomy 12 and del(13q), she would probably need treatment within the next 2-3 years. Dr. Ahn let Diane know that when she did qualify to start treatment, she would coordinate with Diane’s local hematologist-oncologist at the Life Span Cancer Center to implement the treatment plan.

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Diane stated that neither Dr. Ahn nor her local hematologist-oncologist went over what medications Diane could expect to take when the time came for her to start treatment. The reason for this was that there could be more advanced therapies multiple years in the future, and talking about what was available at the present moment was not worth noting.

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Researching CLL Topics to Help Decrease Anxiety

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During Diane’s watch and wait period, she took to reading everything she could find about CLL. She joined CLL community Facebook groups and read content from credible CLL sources to learn more about the disease. This dedicated research approach helped ease her anxiety as she learned that CLL can usually be well-managed with the help of non-chemo targeted therapies if she ever were to need treatment. Diane stated she is very grateful for the resources that the HealthTree Foundation provides to CLL patients.

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Diane’s Preference for a Fixed-Duration Therapy

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Diane stated that if she needs treatment, the therapy she chooses will come down to how long she’ll need to take it, what the side effects will be, and how much it will cost. Based on the currently available CLL treatments, her preference would be venetoclax (Venclexta) + obinutuzumab (Gazyva). She prefers Venclexta + Gazyva over a BTK inhibitor because she does not want to take a long-term pill. She is happy that her CLL specialist will be able to implement any treatment plan through her local hematologist-oncologist so that the therapy is administered near her home, limiting the amount of travel distance. Diane stated she is also open to joining a clinical trial if she qualifies.

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Lifestyle Changes During Watch and Wait - Nutrition and Qigong

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While in watch and wait, Diane has turned her focus to improving any lifestyle factors she can to potentially decrease the risk of needing treatment. Some of these include following the advice from Glenn Sabin’s book called “N of 1”, a true story about how he healed from his CLL using nutrition and other wellness methods. Diane joined the Square One program by Chris Beat Cancer, a cancer patient who healed himself through nutrition. Diane also enjoys practicing a Chinese movement technique called Qigong, which involves exercise to improve health and well-being. These wellness techniques help Diane feel in control of her lifestyle, and she hopes that they will reduce the chance of her needing treatment in the future.

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“This is the kind of stuff I like to immerse myself in, it makes me feel good and gives me hope.” - Diane.
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A New Perspective on Life

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After her CLL diagnosis, Diane has a different perspective on life now. The most important things to her are spending quality time with her friends and family. She loves spending time with her two grandchildren.

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We are grateful for Diane taking the time to share her CLL story. We appreciate her insight regarding strategies she is using to improve her well-being during watch and wait.

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Are You Interested in Helping Other CLL Patients?

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Do you believe you have insight that would benefit other CLL patients? We would love to speak with you and share your story. To do so, please email cll@healthtree.org to set up a time to talk. You are also welcome to email over a pre-written article to publish.

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Janice was very kind to share her experience about being treated with CLL targeted therapy combination Venclexta (venetoclax) and Gazyva (obinutuzumab) with HealthTree. Below are the highlights from our conversation that can benefit other CLL patients.

Diagnosis and Deciding to Start Treatment

Janice was diagnosed with CLL about three years ago. Her CLL genetic features included intermediate risk trisomy 12 and higher risk unmutated IGHV. She spent 1.5 years in watch and wait before she and her general oncologist determined that Janice’s CLL had progressed to a point that needed treatment.

During the watch and wait period, Janice reached out to CLL expert Dr. Steven Coutre at Stanford. He did a series of tests to confirm the CLL diagnosis and agreed that the disease had not yet progressed far enough to join a clinical trial or start treatment. He stated that when Janice’s CLL signs and symptoms progressed to a point that she qualified for treatment, she could reach back out to him to review therapy options. Sadly, Dr. Coutre, also a CLL patient, passed away from complications of COVID-19 in November 2021.

When Janice experienced the advanced Rai staging signs and symptoms of enlarged lymph nodes and enlarged spleen, her general oncologist confirmed it was time to start treatment in August 2022. Janice decided to not meet with another CLL specialist after Dr. Coutre because she had full trust in her general oncologist. Her oncologist recommended Janice choose the standard of care for CLL, a one-year treatment cycle of Venclexta in combination with antibody infusion Gazyva. Based on the research Janice had done in her own time, she also agreed that this would be the best treatment for her.

First day of Gazyva Infusions - August 2022

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Last day of Venclexta Tablets - September 2023, One Year Later

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Achieving Complete Remission with Venclexta + Gazyva

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“My oncologist told me to give her a year and she could put me into remission using Venclexta and Gazyva, and she did.” -Janice Brooks
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In the picture below taken on October 8, 2023, Janice celebrates a perfect CT scan of no detectable disease, complete remission, and her 47th wedding anniversary in the wine country - Napa, CA. Congratulations Janice!

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What was your treatment experience like?

Janice stated if she ever had to be treated for her CLL again, she would once again choose Venclexta. The pills were easy to take, and the side effects were manageable. The side effects she experienced included weight gain, mild sinus infections, and infrequent urinary tract infections. She did not experience any of the other side effects some CLL patients report while taking Venclexta such as nausea, water retention, or tumor lysis syndrome.

The side effect of weight gain Janice experienced, her oncologist denied it was tied to Venclexta treatment. Janice, however, saw many other CLL patients on social media boards also voicing concerns about experiencing 10-20 lbs of weight gain while taking Venclexta with no other lifestyle changes to diet and exercise during treatment.

Something we at HealthTree would like to do is conduct a patient survey using HealthTree’s online clinical trial survey platform - Cure Hub to get patient feedback about their experience with this side effect while taking Venclexta. That evidence can then be given to the CLL specialist community to investigate the causes of Venclexta and weight gain.

We can start to do surveys/studies like the above in the future once we get enough CLL patients who have signed up for Cure Hub. We invite you to sign up for Cure Hub here and help us in our goal of accelerating research to improve patient outcomes.

Bridging the Information Gap - Infections

One of the things Janice wishes her doctor would have notified her to be on the lookout for before she started treatment with Venclexta + Gazyva was an increased risk of infections and the reason why that could happen. She shared with me that was something she pieced together on her own to be related to the disease. Over the course of her treatment year, Janice experienced several mild infections from sinus issues to UTIs. When she asked her general oncologist about them, she stated it was because Janice was immunocompromised from the disease and would then prescribe an antibiotic.

Other infection-supportive measures would have been helpful to have known about such as being informed about what exactly she was at risk for, what to look out for, what she could take, and who to call for each side effect.

Now she knows that Venclexta kills cancerous B-cells (CLL) and healthy B-cells which are in charge of helping get rid of viruses and bad bacteria. So, with decreased B-cell levels, CLL patients have an increased risk of infections and will need supportive measures such as immunoglobulin infusions (IVIG), non-live versions of vaccines before treatment to help boost the immune system, and a variety of antivirals, antifungals, and antibiotics to protect the immune system before, during, and after treatment.

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“It would have been nice to know what to expect and who to call for resources to fix things like the infections. Healthcare providers are so busy, but it would have been nice to get some printed materials at least to know what to expect”. -Janice
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On HealthTree’s end, we’re committed to helping close these information gaps by creating written content such as articles, patient guides, videos, and more, to support patients to have the best qualify of life possible before, during, and after treatment. Patients can look forward to an event HealthTree will be hosting about infection prevention for CLL patients this upcoming January 10th, 2024. The registration page will be posted in mid-December on our events page. Our speaker is Dr. Meghan Thompson from the Memorial Sloan Kettering Cancer Center. Patients can join the HealthTree for CLL newsletter to be notified about the event's details.

Bridging the Information Gap - Side Effects of First Gazyva Dose

Another area that Janice wished her healthcare team would have communicated better about was the reaction to expect and how that would be handled with the first Gazyva infusion. Upon receiving her first Gazyva antibody infusion, her body experienced shallow breathing, flushing, and a rash after the first few minutes of the infusion. At first, Janice was not sure if she should speak up or not. She decided to tell her oncology nurse that she felt like something wasn’t right.

At that point, her care team stopped the infusion, administered oxygen and a steroid to Janice to stop the reaction, and waited 30 minutes. They told her the reaction was very normal and most patients’ bodies accepted the infusion after the waiting period. Janice decided to continue with the infusion after the waiting period and like her care team had said, there were no other complications afterward.

\n
“It would have been nice to know that was to be expected so I knew what to look for and not feel uncertain if I should speak up or not. Patients need to not be afraid to speak up because if they’re experiencing those reactions, they do need to stop the infusion temporarily, treat you with a steroid, give you some oxygen, and then they can start it back up again with no more side effects. The body then goes, “Oh, I’ve had this before” with no more complications.”
\n

Balancing Trust in her Healthcare Team and Being her own Advocate

Janice considers herself fortunate to have an attentive team of doctors who are mindful of her health. From her optometrist to her dermatologist, they are all aware of her condition and provide specialized care to the best of their ability.

Even though she feels that the members of her healthcare team are attentive and have her best interest in mind, it's always good to be personally aware of what is going on and advocate for oneself. Being proactive in scheduling and following up on appointments is critical. \"You need to be your own advocate because they can't babysit you,\" she advised. We agree with Janice that patients who decide to learn as much as they can about their disease and are proactive in their treatment care have better treatment outcomes.

\n
\"I really appreciate my oncologist and her care team. They are the best. In their defense, they are busy - with other patients far worse off than me so they have limited time with each patient. That is why I can’t stress strongly enough for those of us with CLL to do our research. Also, go to your appointments with your lists of questions. Their time is limited so we need to make the most of each appointment.\"
\n

Although Janice understands the value of being her own advocate, she also recognizes that having a strong caregiver is really beneficial. Janice's husband attended all of her appointments with her for support. She stated it was not because of necessity but because he wanted to be there to support her for every test result and doctor feedback session.

We are grateful for Janice taking the time to share with us her experience about being treated with Venclexta + Gazyva. We are confident her important insights can help many patients in the CLL community.

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This article was written by Mark who was diagnosed with CLL in 2018 and is getting ready to start treatment with venetoclax this April 2023.

\n\n

Starting Venetoclax

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Hi everyone, my name is Mark. I’m 65 years old and am starting treatment with venetoclax and obinutuzumab this month after being in watch and wait for 5 years. Part of me thought this would come but another part of me didn’t think so after going into the clinic for checkups and them continuing to say, “Nope, you don’t need treatment right now”. Five years of that pattern and now that it’s changing is a little unnerving, but I’m hopeful that venetoclax will do a good job at helping put me into remission for a while. I like that it’s for a fixed duration of a year (this is my first time being treated) and I can take the tablets by mouth. The harder part for me is having to go in for the IV that gives the antibody part of the medicine every so often. I guess I can’t complain too much, I’m grateful for advances in medicine that even give me this option to hopefully not have to take a long-term BTK inhibitor. I want this over and done with, not an eternal pill.

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Gameplan

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I like to have a game plan of what to do and have my wife be on the same page about any side effects that could come up and what to do about them as treatment starts. My motto is, if I’m prepared then I don’t need to be scared.

\n\n

So prepping myself, the venetoclax portion they’ll start me at a lower dose tablet to take once a day, then each week increase the dose over 5 weeks. During that time they told me to make sure I drink at least 6 glasses of water each day starting 2 days before the first dose, on the first dose day, and each time the dose is increased to reduce the risk of tumor lysis syndrome. Other side effects to watch out for are diarrhea, tiredness, low blood cell counts like red blood cells, white blood cells and/or platelets, an infection in the upper respiratory tract, nausea, muscle/joint pain, and fluid buildup/swelling of arms/legs/hands/feet.

\n\n

Prepping Against Side Effects

\n\n

Reading what other patients have tried and what CLL doctors recommend to combat those side effects, I had my wife help me set up calendar reminders on our phones for doctor appointments so those don’t get missed, I plan to have pepto bismol on hand for diarrhea (never thought I’d be sharing how I’m going to manage that with a group of strangers… ha I guess it’s good to be honest about this kind of thing though right?), my wife and kids are ready to help take turns with home and other tasks if the tiredness gets bad so covered there (the hospital also said if we need they can help arrange for us to meet with a social worker to go over other resources available if needed which I thought was nice), if I get the respiratory infection they can give me a long-term lose dose antibiotic till treatment is over (or they said maybe longer if needed) and they can give me an IV of immunoglobulin if those levels are low. If a type of white blood cell gets low (neutropenia) they can give an injection of Neupogen, to help combat nausea they can give me anti-nausea medicines, they can give me an anti-inflammatory if I get the muscle/join pain (they said that goes away after treatment is over), and if I get fluid buildup they recommend taking a diuretic. I’m usually someone that doesn’t share if I’m going through any type of pain or discomfort but this is something I think will be important to speak up about to make the experience manageable.

\n\n

What I’ll expect from the obinutuzumab IV part, is they have 6 treatment cycles, each for 28 days. Cycle 1 seems to be the most time demanding with 100 mg IV on day 1, 900 mg IV on day 2, and 1,000 mg IV on days 8 and 15. The frequency goes down after that for cycles 2-6 receiving a 1,000 mg IV on the first day of each cycle. Apparently, the infusion administration time can take between 3-5 hours, sometimes shortening to 90 minutes starting cycle 2 if I don’t have severe reactions in cycle 1. Hope that can be done, otherwise, I’ll bring my audiobook to hang out.

\n\n

Here’s to hoping all goes well, wish me luck!

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This article was written by Beth Smith who was diagnosed with CLL in 2023.

\n\n

Diagnosed

\n\n

I learned I had CLL after a checkup, the bloodwork came back and the doctor said my white blood cell count was higher than normal. Further testing showed the type of white blood cells which were out of balance were specifically B-cells, the immune system cells that monitor the bloodstream to check for bad bacteria or viruses. The doctor said they were all replications of the same mature B-cell and had a similar protein pattern that labels them as chronic lymphocytic leukemia (CLL), a type of cancer that is typically slow growing and affects B-cells located in the bone marrow, bloodstream, and sometimes lymph system.

\n\n

How can I have cancer? I’ve been trying to do my best to eat healthy, exercise, etc. I felt shock, fear, sadness, and so many other overwhelming emotions. When we got out to the car, my husband held me while we both cried. He’s always been my biggest support and said Beth, you have a choice, you can live in fear or faith, both can’t exist in the same space. A huge wave of peace washed over me filling me with calm, love, and an understanding that I was deeply loved, God is mindful of me, and things are going to work out. I don’t feel like I self-conjured that up, I’ve done mindfulness and other meditation/therapy techniques before and at the time wasn’t actively trying to work through my emotions. I’m grateful for the support from my husband and the extra boost of peace I needed from God right then.

\n\n

I have cancer but I can't start treatment yet?

\n\n

I was referred to a local hematologist-oncologist (blood cancer doctor) who had experience treating CLL patients. That helped me feel more reassured that he has seen this before and could give me more answers. To that point, I had only ever associated medicines that treated cancer with chemotherapy. I was told that there were actually newer medicines to treat CLL that were not chemotherapy called targeted medicines. They target mainly the CLL cells to reduce them to a lesser or undetectable state achieving a remission for multiple years. They were not, however, a cure for CLL as the cancer cells eventually resurface and another round of treatment is needed. I asked, “When do I start treatment then?” The doctor said that I would actually not be needing treatment right now and they were going to monitor the progression of the cancer during a period called watch and wait.

\n\n

Why can’t I start treatment right away? I was just told I have cancer, and if it hasn’t progressed to a deadly point why can’t we treat it while it is still small, wouldn’t that be more helpful? What I was told is that because the targeted medicines don’t destroy the CLL cells forever and only help manage the disease, further treatment would be needed so if the CLL wasn’t currently causing issues related to how I was feeling then it would be better to wait to avoid medicine side effects as long as I could. As well, BTKis if taken over a long period of time can cause the CLL cells to mutate to which the cancer cells will no longer respond to treatment. The doctor recommended when I do need treatment, to try a fixed-duration targeted therapy combination of venetoclax with an antibody medicine obinutuzumab.

\n\n

I was frustrated, doesn’t the body frequently come across damaged cells and recognize them as ineffective to at which point they are destroyed to keep the body healthy? The body should still be smart enough to see that these cancerous B-cells cells are not normal and destroy them like they do other virus-infected cells.

\n\n

CAR T and hope for the future

\n\n

While researching, one of the things I came across for blood cancer treatments was immunotherapies. Medicines that strengthen the immune system, instead of the targeted therapies like BTK inhibitors or a venetoclax/antibody combination which suppress the immune system. CAR T-cell therapy popped up, a way to strengthen the body’s cancer-killing T-cells and there were two CLL patients that 10 years ago had gone through CAR T-cell therapy and were still disease-free to this day?! Why wasn’t this a bigger deal?? Why isn’t this approved yet for CLL?

\n\n

Researching apparently CAR T is in clinical trials for CLL although is approved for other types of blood cancers and is reserved for patients that have tried other types of treatments like BTKis and venetoclax and become unresponsive to them, saving the treatment for higher-risk patients. Are you kidding me… if BTKis and venetoclax only help give extra years but don’t cure it, I feel like doctors should be mainly focusing on enhancing the body’s immune system to cure the disease with immunotherapies like CAR T.

\n\n

Here I am, not yet even qualified to have a disease progressed enough to start a targeted treatment combination like venetoclax + obinutuzumab and would be in watch and wait like a sitting duck. I feel like I’ve done everything in my control research-wise and trying to still live a healthy lifestyle to help extend my length and quality of life to enjoy more time with my husband and kids.

\n\n

I’ve accepted this is something I will likely live alongside of and manage with targeted therapies if I ever need treatment, and am hopeful that if for some reason targeted therapies don’t work I can qualify for and enroll in CAR T. For now, I’m going to live my life to the fullest, enjoy the moments I have, and trust God that there is life after this mortal period, things are going to work out. I know I haven’t been through all the medicines or have side effect solutions to share like other CLL patients, but hopefully what I have been through will help someone. Best, -Beth.

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A recent survey conducted by HealthTree Foundation explores how individuals living with blood cancer are navigating life emotionally, spiritually, and socially following their diagnosis. The results paint an encouraging picture of post-traumatic growth, resilience, and the deep meaning many patients find during their cancer journey.

The study surveyed 251 blood cancer patients and asked questions related to life satisfaction, emotional well-being, relationships, purpose, and faith. Despite the adversity that comes with a cancer diagnosis, many respondents reported profound personal transformation and growth.

A Path Through Adversity: Signs of Post-Traumatic Growth

One of the most uplifting findings of the survey was that many patients are experiencing growth as a result of their cancer experience.

Changed Priorities: 75% of respondents said their values shifted moderately or more as a result of their diagnosis
Appreciation for the Value of Life: 80% gained a moderate or deeper appreciation for life’s value
Increased Resilience: 68% now feel moderately or more confident handling difficulties
Personal Strength and Connection: Many discovered they were stronger than they thought and gained a greater sense of closeness with others

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“I learned a great deal about how wonderful people are,” one respondent reflected—an insight shared by 84% of participants.
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What Flourishing Looks Like Today

The survey invited participants to rate how they feel today in several aspects of daily living.

Life Satisfaction and Happiness

Despite the physical and emotional challenges of living with blood cancer, patients have:

7.10 out of 10 average life satisfaction
7.1 out of 10 happiness rating

Many respondents reported feeling generally satisfied with life, with 50% scoring themselves 8 or higher.

Mental and Physical Health

Patients rated their physical health at an average of 6.5 out of 10, and, encouragingly, rated their mental health higher at an average of 7.3 out of 10. These scores suggest many patients are managing their condition with a relatively strong sense of overall well-being.

Meaning and Purpose

The survey also found high levels of personal meaning and purpose:

86% of people feel the things they do in life are worthwhile
7.2 out of 10 average understanding of their life's purpose

Faith and Spirituality: Meaning Beyond Medicine

The survey revealed a wide range of spiritual and religious experiences and beliefs.

85% believe in God or a higher power
37% believe God is active in their lives
26% believe in a higher power or divine being
66% attend religious services
64% engage in personal spiritual practices monthly or more

Many respondents described a strong, supportive relationship with God, while others expressed uncertainty or non-belief. Regardless of belief system, spirituality appeared to be a meaningful dimension in coping with illness for a large number of participants.

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Why This Research Matters

This survey serves as a powerful reminder that a cancer diagnosis touches every aspect of a person’s life, not just the physical.

Because of adversity and not despite it, patients are finding ways to grow, reflect, and live with greater purpose. These stories of flourishing underscore the importance of holistic care—care that nurtures the body, mind, and spirit.

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“We need to understand not just how patients survive—but how they thrive.” shared HealthTree's research team.
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Add Your Voice

Both patients and researchers would like to know more about your life experience dealing with a blood cancer diagnosis. It should not take more than 10 minutes to complete. To contribute to this survey, click the button below.

Participate in the Flourishing Survey

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More patient data within HealthTree Cure Hub means more accurate results for blood cancer research.

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We encourage you to invite other CLL patients within your circle to connect their medical records to HealthTree Cure Hub so that they can participate in real-world CLL research and also receive the many personal benefits that come from being a part of this patient database and portal.

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Benefits of HealthTree Cure Hub for CLL Patients

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You can benefit from HealthTree Cure Hub by:

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Tracking Your CLL Labs
Searching Solutions to Your Side Effects
Participating in CLL Research
Searching for CLL Clinical Trials
Finding Your CLL Twin

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How To Share HealthTree Cure Hub Within Your CLL Circle

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Ask us to share more about HealthTree Cure Hub at your local support group. We can present virtually to your group and explain the benefits and why it's important to blood cancer research.
We can present a virtual webinar to people within your circle (outside of a support group), if you want to host a virtual get-together with people from your clinic or treatment center.
You can request pamphlets/brochures from us to send to your local clinic or academic center. Just email sofia@healthtree.org.

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Thank you for being willing to participate in and spread the word about HealthTree Cure Hub. The more people we have as a part of our database, the more accurate CLL research can be done.

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!AD!

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Do your part to accelerate blood cancer research by participating in one of our health history surveys. These surveys help researchers understand a better overall picture of their patients' current health, health history, and quality of life.

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Completing these surveys also helps HealthTree Foundation understand your current health, so that we know what personalized treatment recommendations and clinical trials to give to you in your HealthTree Cure Hub profile. This is a huge benefit that can simplify your treatment plans for chronic lymphocytic leukemia.

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By contributing to these surveys, you are adding important information to our research database. The more information that researchers have, the more accurate their data pulls will be when analyzing CLL patients, their health, and their outcomes.

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Listed below are seven health surveys with details about each one. You can choose to take one or more of these surveys to contribute to our patient database.

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Please note that before shared with researchers, your data is anonymized. We value your privacy and are grateful for your contributions.

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How Can I Take These Surveys?

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You will need a HealthTree Cure Hub account to participate in these surveys. If you don't have a HealthTree Cure Hub account, you can sign up for free today.

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My Current Health

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Description: This is a HealthTree Survey about your current health status. We ask that you please keep this updated as your health condition changes over time.
What it asks: this survey asks about any heart, lung, bone, kidney, diabetes, blood pressure, blood clot (DVT), neuropathy, infections, and anxiety conditions. It also asks about your ability to walk/exercise, shop for groceries, or prepare meals without help, whether or not you have a caregiver, your stem cell transplant eligibility, and the current status of your CLL.
Time: This survey should take you about six (6) minutes.

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Health History: Heart and Lungs

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Description: A HealthTree survey regarding your cardiovascular and pulmonary system health history.
What it asks: this survey asks about your history of any cardiovascular disorders including hypertension, abnormal heart rhythms or arrhythmia, Deep venous thrombosis (DVT), brain stroke, pulmonary embolism, heart failure, myocardial infarction, coronary artery disease, peripheral artery disease, aneurysm or other blood clot conditions. It also asks about your history with pulmonary disorders such as asthma, chronic obstructive pulmonary disease (COPD), pulmonary emphysema, sleep apnea, and recurrent pneumonia.
Time: This survey should take you about seven (7) minutes.

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Heart and Metabolic Family History

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Description: A HealthTree survey about your family health history.
What it asks: This survey asks about your family history with cardiovascular disease such as high blood pressure, heart attack, heart failure, arrhythmia, atrial fibrillation, heart valve complication, stroke, pulmonary embolism, deep vein thrombosis (DVT), peripheral vascular disease, or other health complication. It also asks about any family history of metabolic disease such as diabetes type 1 or type 2, metabolic syndrome, obesity, hypercholesterolemia, or another metabolic disease.
Time: Depending on your answers, this survey could take you up to 8 (eight) minutes.

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Cancer Family History

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Description: A HealthTree survey about your family's history with cancer.
What it asks: This survey asks about your family's history with any of the following cancers: bladder, breast, brain, colon, colorectal, Hodgkin's disease, kidney, leukemia, liver, lung, lymphoma, melanoma, mouth/throat, pancreatic, prostate, rectal, sarcoma, stomach, thyroid, uterine/endometrial, unknown, other, cervical, or ovarian.
Time: Depending on your answers and knowledge of cancer family history, this survey could take you up to 10 minutes.

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Health History: General and Immune

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Description: A HealthTree survey about your blood type, allergies, autoimmune conditions, or chronic infections.
What it asks: This survey asks you to identify your blood type, if you have been diagnosed with connective tissue disease, ulcer disease, any food, drug, insect, latex, mold, pet, or pollen allergies, any autoimmune disorders such as AIDS, autoimmune anemia, cerebrovascular disease, Hashimoto's thyroiditis, Grave's disease, psoriasis, lupus, inflammatory bowel disease, Raynaud's syndrome, scleroderma, Sjögren's syndrome, MS (multiple sclerosis), Fibromyalgia, or another autoimmune disorder. Finally, it asks about any chronic infections such as HIV, Hepatitis B or C, mono, COVID-19, shingles, or another chronic infection.
Time: This survey will take you about 14 minutes to complete.

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Health History: Kidney, Intestines, Skeletal, etc.

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Description: A HealthTree survey about related health conditions, including diabetes, thyroid, kidney, gastrointestinal, neurological, and musculoskeletal issues (including osteonecrosis of the jaw).
What it asks: This survey asks if you have ever been diagnosed with diabetes, hyperlipidemia, thyroid disease, kidney, gastrointestinal, neurological, or musculoskeletal disorders.
Time: Depending on your answers, this survey could take you up to 15 minutes.

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Health History: Surgeries, Other Cancers, Mental Health

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Description: A HealthTree survey about past surgeries, other cancer diagnoses you may have, and any other related mental health concerns.
What it asks: This survey asks if you have had any of the following surgeries: appendectomy, gallbladder removal, hysterectomy, hernia repair, mastectomy, C-section, prostatectomy, cataract removal, joint replacement, broken bone repair, heart bypass surgery, stent procedure, angioplasty, or any other surgeries. It also asks about other non-CLL cancer-related diagnoses like basal cell carcinoma and the other cancers listed above. Finally, it asks about mental health disorders such as depression, anxiety/panic attacks or PTSD, insomnia, or other mental health conditions.
Time: Depending on your answers, this survey could take up to 30 minutes of your time.

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If you have any questions or concerns about the surveys, you can contact our HealthTree Patient Navigators (support@healthtree.org).

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Thank you for being willing to contribute to CLL research!

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Chronic lymphocytic leukemia patients use various modes of transportation to get to their CLL appointments- but how does transportation affect CLL care?

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Participate in this four-minute, six-question survey to help blood cancer researchers better understand how consistent access to transportation affects cancer care.

\n\n

Many patients don't have access to support (such as caregivers), public transportation (such as taxis, buses, or metros), or financial means (for gas or transport) to afford proper CLL care.

\n\n

How can this affect CLL outcomes? Regardless of what kind of transportation you use and have access to, please take this survey so researchers can better understand how the CLL population as a whole uses transportation and how it affects their ability to attend appointments.

\n\n

Transportation Survey

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The information you submit is protected and private and will be shared anonymously with researchers. We value your privacy and are grateful for your contributions.

\n\n

If you have any questions or concerns about the survey, you can contact our HealthTree Patient Navigators (email support@healthtree.org or call/text +1(800) 709-1113).

\n\n

If you don't have a HealthTree Cure Hub account, you can sign up for free today.

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Does the use of alcohol, tobacco, or drugs impact a CLL diagnosis or its progression? What about environmental exposure to different chemicals like cleaning products or pesticides?

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CLL patients are invited to accelerate research toward a better CLL treatment and cure by participating in surveys like this brief six-minute assessment. The data gathered will help researchers understand how substance use and environmental exposures may impact CLL development and progression.

\n\n

The information you submit is protected and private and will be shared anonymously with researchers. We value your privacy and are grateful for your contributions.

\n\n

Take the Substance Use and Environmental Exposure Survey

\n\n

If you have any questions or concerns about the survey, you can contact our HealthTree Patient Navigators (email support@healthtree.org or call/text (800)709-1113).

\n\n

If you don't have a HealthTree Cure Hub account, you can sign up for free today.

\n\n

We also invite you to securely connect your medical records to HealthTree Cure Hub. Doing so will help researchers answer questions like whether substance use or environmental exposures impact the amount of time between a patient’s diagnosis and starting treatment.

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Securely Connect My Medical Records to HealthTree Cure Hub

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HealthTree Foundation is promoting easier ways to participate in CLL research this month. Learn of a quick, easy opportunity below.

\n\n

Vaccinations are one of the best ways that immunocompromised CLL patients can protect their health. However, vaccinations and vaccination schedules are not currently standardized within CLL treatment/practices.

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By filling out this 1-minute, 3-question survey, you can contribute to blood cancer research to help specialists better understand what vaccinations contribute to the best protection or outcomes for chronic lymphocytic leukemia patients.

\n\n

Take the Vaccinations Survey

\n\n

The information you submit is protected and private and will be shared anonymously with researchers. We value your privacy and are grateful for your contributions.

\n\n

If you have any questions or concerns about the survey, you can contact our HealthTree Patient Navigators (email support@healthtree.org or call/text +1 (800) 709-1113).

\n\n

If you don't have a HealthTree Cure Hub account, you can sign up for free today.

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People living with blood cancer may receive corticosteroids (sometimes referred to as steroids) as part of their treatment plan. In this article, you will learn how corticosteroids work, how they are used alongside blood cancer treatments, and important safety considerations.

What corticosteroids are and how they work in the body

Corticosteroids like prednisone and dexamethasone are treatments designed to mimic hormones naturally produced by the adrenal glands, which sit above the kidneys. These hormones play important roles in the body's response to stress, inflammation, and immune system activity.

Corticosteroids work through both \"genomic\" and \"non-genomic\" pathways:

Genomic effects: Once inside a cell, corticosteroids bind to receptors and move into the nucleus to change how certain genes are expressed. This mainly decreases the production of inflammatory molecules.
Non-genomic effects: Corticosteroids can also act quickly at the cell membrane, blocking early stages of inflammation within minutes.

Understanding this is important because it explains why corticosteroids can act both rapidly and over time to control treatment-related symptoms.

Corticosteroids to support blood cancer treatments

Corticosteroids are used before or alongside cancer therapies. The benefits they provide include:

Reducing allergic-like reactions
Managing inflammation
Decreasing nausea and vomiting
Improving a poor appetite

This supportive use helps patients tolerate their blood cancer treatment better and maintain a higher quality of life.

Side effects and what patients should know

While corticosteroids are helpful, they also come with potential risks. Common side effects include:

Increased risk of infections
High blood sugar levels
Mood changes (such as anxiety or irritability)
Weight gain
Bone loss over time

The risk of these effects often depends on the dose and how long the medicine is taken. For people with blood cancers, this means that careful monitoring by your healthcare team is necessary. Special consideration may also be needed during treatments like CAR T-cell therapy, where research suggests corticosteroids at high doses for long periods of time should be limited to maintain treatment effectiveness.

Summary

Corticosteroids support blood cancer treatments by reducing inflammation and helping control immune responses. When given at the correct dose for the right amount of time, they can improve how well treatment is tolerated and symptoms are managed. Understanding their benefits and risks can help individuals and care teams make informed choices during the treatment process.

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Sources:

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In this article, you’ll learn how chronic myeloid leukemia (CML) and chronic lymphocytic leukemia (CLL) differ in the type of white blood cells affected, how they are treated, and what symptoms and complications they may cause.

Understanding the basics: What are CML and CLL?

CML and CLL are both long-developing blood cancers that begin in the bone marrow—the soft tissue inside bones that produces blood cells.

CML starts in cells called myeloid cells, which help the body respond to infections and regulate inflammation. Most people with CML have a genetic change called the Philadelphia chromosome, caused by parts of chromosomes 9 and 22 switching places.

CLL begins in lymphocytes, a type of white blood cell that helps fight infections. While the exact cause of CLL isn’t known, it likely begins with genetic changes in early blood-producing cells.

Knowing the cell type involved helps determine the best treatment approach and how the condition may progress.

Symptoms can be similar

Many individuals with CML or CLL may not notice any symptoms at the time of diagnosis. Often, the cancer is discovered during routine blood tests.

When symptoms are present, they may include:

Fatigue
Fever, chills, or night sweats
Unexplained weight loss
Bone or abdominal pain
Feeling full quickly when eating

In addition, CLL may cause swollen lymph nodes, especially in the neck, underarms, or groin.

These symptoms happen because the abnormal white blood cells don’t function normally and can build up in the body over time.

How CML and CLL affect healthy blood cell production

Both types of leukemia lead to the overproduction of abnormal white blood cells, which can crowd out healthy cells in the bone marrow. This can result in several complications:

Anemia – a low red blood cell count, causing fatigue and shortness of breath
Leukopenia – a low white blood cell count, raising infection risk
Neutropenia – a decrease in neutrophils, the cells that target harmful microorganisms
Thrombocytopenia – a shortage of platelets, which can cause easy bruising or bleeding

Understanding these complications helps individuals recognize how the cancer can impact everyday health and the importance of regular blood monitoring.

Treatment approaches are not the same

The type of treatment used for CML or CLL depends on the biology of the condition and how fast it is progressing.

CML treatment usually includes targeted therapy, especially a group of medicines called tyrosine kinase inhibitors (TKIs). These medicines block the activity of the BCR-ABL1 protein, which fuels the abnormal growth of myeloid cells.

Common TKIs for CML include:

Imatinib (Gleevec, Novartis)
Dasatinib (Sprycel, Bristol Myers Squibb)
Nilotinib (Tasigna, Novartis)
Bosutinib (Bosulif, Pfizer)
Asciminib (Scemblix, Novartis)

In advanced cases or when TKI treatment is not effective, a stem cell transplant from a donor may be considered.

CLL treatment is often given only when treatment-indicating symptoms arise. Once treatment is needed, commonly used targeted therapies include:

BTK inhibitors block signals that help CLL cells grow
Venetoclax (Venclexta, AbbVie) helps trigger cell death in CLL cells
Immunotherapies like obinutuzumab (Gazyva, Genentech) or CAR T-cell therapy liso-cel (Breyanzi, BMS), help the immune system target and remove CLL cells

In rare cases, a donor stem cell transplant may also be an option for CLL if other treatments stop working.

These treatment differences are important because they reflect how each leukemia grows and responds to therapies.

Long-term outcomes

CLL typically has a higher five-year survival rate compared to CML, but this depends on the individual’s age, overall health, and the phase or risk group of the cancer.

CML, when treated early and effectively with TKIs, can often be managed for many years. People with CLL can also live for many years with sequenced therapies.

Understanding treatment options and possible complications empowers people to take an active role in their care.

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Key takeaways

CML and CLL are slow-growing blood cancers that affect different types of white blood cells. While they may look similar at first, their origins, complications, and treatment options differ. By understanding these differences, individuals can better navigate their care choices and work with their healthcare team to manage their condition effectively.

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Sources:

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Chronic myelomonocytic leukemia (CMML) is a type of blood cancer where abnormal monocytes (a type of white blood cell) growth occurs in the bone marrow. These changes are often related to specific mutations in a certain gene called TET2.

What Is TET2?

TET2 is the name of a gene that produces a protein called tet methylcytosine dioxygenase 2. When this protein functions properly, it can be a tumor suppressor, which prevents cells from growing and dividing uncontrollably. It is found throughout the body and is important in developing blood cells. It is predominantly seen in the spleen and bone marrow.

Mutated TET2 Impact

Mutations in TET2 are seen in approximately 30% of people with myeloid malignancies, such as myelodysplastic syndromes, chronic myelomonocytic leukemia, and myeloproliferative neoplasms. They are also the most frequent mutations identified in peripheral T-cell lymphomas. They are a significant genetic factor contributing to the development of CMML, often associated with a poorer prognosis for patients.

A recent study discovered that the mutated TET2 changes the body’s RNA, altering the structure and pathway of this protein. This leads to an open environment that allows blood cancer cells to grow. The study uncovered that MBD6 is a great target for treating myeloid malignancies with the TET2 mutation.

Almost a decade ago, it was discovered that 10% of people aged 70 and older who have the TET2 mutation (and others) can develop clonal hematopoiesis of indeterminate potential (CHIP). These patients have a higher possibility of developing myeloid cancer and cardiovascular diseases.

How Are CMML And TET2 Connected?

Mutations in the TET2 gene are commonly found in CMML patients, often occurring alongside other genetic abnormalities like ASXL1 and RUNX1 mutations. When TET2 is mutated, its ability to remove methyl from the DNA is impaired, leading to abnormal gene expression and uncontrolled cell growth, contributing to the development of CMML. The presence of a TET2 mutation in a CMML patient can be used as a prognostic marker, as it is often linked to a more aggressive disease course and poorer overall survival.

Conclusion

TET2 plays a pivotal role in the development of CMML. Understanding what role mutations play in a disease, treatment can be tailored and specific to the patient and improving the overall efficacy of therapy.

“This study is a turning point potentially leading to the exploration of several players within this pathway that could be targets for therapeutic intervention.” - Mingjiang Xu, molecular medicine professor at the Joe R. and Teresa Lozano Long School of Medicine.

You can keep learning with HealthTree's comprehensive updates on research news, conferences and more. Click the button below to browse our different article categories.

How Do HMAs Work?

HMAs are considered the standard treatment for CMML. They can improve blood cell counts and decrease the need for transfusions.

By reversing the DNA methylation, they can reprogram tumor cells.
They can activate genes that help healthy cells mature.
They can kill cells that are dividing abnormally quickly.
HMAs are believed to re-express tumor suppressors.
Patients who progress to acute myeloid leukemia (AML) after responding to HMAs have a median overall survival of 8 months.

However, HMAs can also induce cytopenias (low levels of red blood cells/white blood cells/platelets), especially in the early stages of treatment. This can lead to dose restrictions, treatment delays, or discontinuation. Other side effects include nausea and vomiting, diarrhea or constipation, weakness, and fatigue. Adding growth factors to HMA treatment may help prevent this.

How Are HMAs Used?

HMAs are often preferred for patients who are not eligible for transplant. Treatment usually starts when CMML is symptomatic or progressive and is typically administered by IV infusion. HMAs stop DNA methyltransferase (DNMT- an enzyme that adds methyl groups to DNA molecules). This re-expresses tumor suppressors and triggers the death of leukemic cells.

Azacitidine (Vidaza): has effects on both DNA and RNA.
Decitabine (Dacogen): acts only at the DNA level.
Decitabine and Cedazuridine (Inqovi).

Other Treatments For CMML

Hydroxyurea: A chemotherapy drug that can help some CMML patients live longer.
Pembrolizumab: A humanized monoclonal antibody that may be effective in patients who failed HMA treatment.
A combination of HMAs and Venetoclax has shown good results in CMML, with an overall response rate of 62%.
In 2023, the FDA granted fast-track designation to IO-202 for treating patients with relapsed/refractory CMML. This anti-LILRB4 monoclonal antibody is being investigated as an immunotherapy for blood cancers. As of 2024, at the American Hematology Association, updates from a phase 1 trial showed promising results.

Conclusion

Hypomethylating agents (HMAs) are the standard of care for treating CMML as chemotherapy. Currently, immunotherapy for CMML is not available. Therefore, using HMAs after being diagnosed can be more effective.

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Are Hypomethylating Agents the Best First-Line Choice for Treating CMML?

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A recent study examined how the time between an acute myeloid leukemia (AML) diagnosis and the start of treatment affects patient outcomes. The research focused on 488 adults in the United States who began treatment with a combination of hypomethylating agents (HMAs) and venetoclax, a common therapy for AML.

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Key Findings

Longer Time to Treatment (TDT): The study found that patients who had a longer period between diagnosis and the start of treatment, experienced better overall survival rates. This suggests that taking additional time for thorough disease assessment and treatment planning may be beneficial.
Comprehensive evaluation: Delaying treatment allowed healthcare providers to conduct a complete appraisal of the disease's biology, leading to more personalized and effective treatment strategies.
Patient wellbeing: The findings indicate that improving a patient's general health and performance status before beginning therapy could enhance treatment outcomes.

Implications for AML Patients and Caregivers

These results, shared at the ASH 2024 Conference, suggest that immediately starting treatment after an AML diagnosis may not always be necessary. Allowing time for comprehensive evaluations and personalized treatment planning can lead to better survival outcomes.

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“A lot of times, [when] patients first get diagnosed, they may have an infection, they may need transfusions… to see a physical therapist… a nutritionist…we want to focus on optimizing patient’s care outside of the fact that they have newly diagnosed AML,” shares Samuel Yates, MD, MS, the primary investigator on the study.
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Patients and caregivers should feel empowered to discuss the timing of treatment initiation with their healthcare team to ensure the best possible approach is taken.

Watching the following interview can provide further insights into the study's findings and their implications for AML treatment:

For further learning on this topic, check out the following webinar on AML Treatment with Dr. James Dugan.

View the Webinar

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Source:

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Impact of Time from Diagnosis to Treatment on Outcomes of Adults with AML Treated with HMA and Venetoclax: A US-Based, Multi-Center, Real-World, Retrospective Analysis from the Consortium on Myeloid Malignancies and Neoplastic Diseases (COMMAND)
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Cytokine receptors are proteins found on the surface of cells. They act like \"docking stations\" for cytokines, which are small proteins that cells use to send signals to each other. These receptors help control critical functions in the body, such as regulating the immune system, managing inflammation, and promoting the growth of blood cells.

However, in certain diseases like acute lymphoblastic leukemia (ALL), these receptors can become abnormal, leading to changes in cytokine levels that promote cancer cell growth and affect how the disease progresses.

What Do Cytokine Receptors Do?

Cytokine receptors play an important role in cell communication and function. Here's how they work:

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Receiving Signals: Cytokines attach to specific cytokine receptors on cells, delivering signals like a key fitting into a lock.
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Triggering Cell Actions: Once the cytokine binds to the receptor, it starts a chain reaction inside the cell (called a signaling pathway), which leads to specific effects.
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Targeted Effects: Each type of cytokine binds to its unique receptor, ensuring precise communication and actions.
\n

CRLF2: A Cytokine Receptor That Affects ALL

One type of cytokine receptor, called Cytokine Receptor-Like Factor 2 (CRLF2), has been linked to poor outcomes in ALL. Research shows that when CRLF2 is overproduced (overexpressed) in leukemia cells, it creates pathways that encourage cancer cell growth.

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CRLF2 and High-Risk Patients: In studies involving over 6,000 patients, CRLF2 overexpression was associated with a higher risk of:
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Relapse (the cancer returning after treatment).
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Minimal Residual Disease (MRD): The small number of leukemia cells left after treatment, which increases the risk of relapse.
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Slower responses to chemotherapy.
\n

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Key Associations:
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CRLF2 overexpression is often linked to the JAK2 mutation (a gene change involved in cancer cell growth).
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Hispanic/Latino ethnicity and children with Down syndrome are more likely to have CRLF2 overexpression. About 60% of children with Down syndrome and ALL show this abnormality.
\n

How Is CRLF2-Overexpressing ALL Treated?

Treating ALL patients with CRLF2 overexpression involves targeted and risk-adapted therapies to improve outcomes. Some options include:

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Targeted Therapies:
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Blinatumomab or Inotuzumab: Antibody-based treatments that target specific leukemia cells.
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Tyrosine Kinase Inhibitors (TKIs) or JAK Inhibitors: Drugs that block pathways driving leukemia growth.
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Stem Cell Transplant (Allogeneic Hematopoietic Cell Transplant):
\n

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A procedure where healthy donor stem cells replace diseased bone marrow. This is often used in patients with high MRD levels.
\n

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New Therapies in Development:
\n

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Ruxolitinib: A drug that blocks the JAK-STAT pathway, which is often activated in CRLF2-overexpressing ALL.
\n
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TSLPR-Targeted CAR T-Cell Therapy: A cutting-edge treatment that uses modified immune cells to attack leukemia cells.
\n

Despite these advancements, outcomes for adults with CRLF2-overexpressing ALL remain challenging, with a 5-year survival rate of less than 20%. More research is needed to improve therapies for this high-risk group.

Why Is CRLF2 Important in ALL?

CRLF2 overexpression drives leukemia cell growth by activating two main pathways:

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JAK/STAT Pathway: Promotes cancer cell survival and growth.
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\n
PI3K Pathway: Supports cancer cell proliferation (rapid increase).
\n

These pathways make CRLF2 a critical target for developing new treatments. According to researchers, “CRLF2 gene rearrangements, such as IGH-CRLF2 and P2RY8-CRLF2 fusion genes, lead to CRLF2 overexpression, which in turn promotes leukemia cell growth and poor outcomes in ALL patients.”

Conclusion

Cytokine receptors like CRLF2 play a significant role in the progression of acute lymphoblastic leukemia by encouraging cancer cell growth. While CRLF2 overexpression is associated with a higher risk of relapse and poor prognosis, advances in targeted therapies, stem cell transplants, and emerging treatments offer hope for patients.

Continued research is vital to understanding how to treat high-risk ALL patients effectively and improve survival rates.

Sources:

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We are proud to announce that our CEO, Jenny Ahlstrom, has been recognized as a 2025 Remarkable Women Honoree by ABC4 Utah for her groundbreaking work in healthcare innovation and cancer research through the HealthTree Foundation.

Featured in ABC4's Women's History Month special segment, our founder was celebrated for turning her cancer diagnosis into a transformative mission with global impact. At age 43, following her diagnosis with multiple myeloma, Jenny combined her technology expertise with a passionate drive to improve patient care, establishing the HealthTree Foundation. Watch Jenny's inspiring interview below:

Under her leadership, our foundation has revolutionized patient support and cancer research through three key pillars:

Comprehensive education through podcasts, webinars, and our dedicated university platform
Community support connecting patients and caregivers
An innovative data registry accelerating critical research in blood cancer

This recognition is particularly meaningful because we have transformed traditional patient advocacy by applying technology solutions to healthcare challenges. The impact of our work extends beyond multiple myeloma, with the HealthTree model showing promise for application across various blood cancers and other diseases.

We congratulate our CEO on this recognition and her leadership of the HealthTree Foundation's mission to accelerate cancer research and improve patient outcomes.

Join HealthTree Community

At HealthTree, we understand the immense value of shared community and support. That's why we've established Regional Cure Teams – a supportive network powered by volunteers to serve as a critical extension of HealthTree Foundation in your region.

Join Your Regional Cure Team

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We're thrilled to share some exciting news! Our CEO and Founder, Jenny Ahlstrom, has been named to Inc.'s 2025 Female Founders 500 list. This recognition celebrates the most innovative women entrepreneurs who are making a real difference in the world, and we couldn't be prouder of Jenny's inclusion among these remarkable leaders.

As many in our community know, Jenny's journey is deeply personal. As a multiple myeloma patient herself, she understood firsthand the frustrations and challenges that cancer patients face. This personal experience drove her to create something truly transformative – a platform that bridges the gap between patients and researchers in ways never done before.

Under Jenny's leadership, HealthTree Foundation is pioneering a revolutionary cancer research approach. We've developed a comprehensive suite of over 14 integrated technology abilities that do something amazing: they give patients the power to actively contribute to finding cures. Our platform can support all cancers, making us a leader in Digital Health Advocacy.

This recognition is particularly meaningful because it acknowledges our unique approach to solving one of healthcare's biggest challenges. Traditional cancer research often struggles with limited access to patient data, but HealthTree's direct-to-patient model is changing that narrative. By building trust and long-term relationships with patients, we're creating a more complete picture of the cancer journey that researchers can use to accelerate discoveries.

\n
\"We are revolutionizing cancer research by using technology that links patients and their data with researchers for faster cures,\" Jenny shared upon receiving this honor. \"Providing patients with abilities that enable them to become cure contributors is the future of personalized medicine.\"
\n

This recognition from Inc. comes after a rigorous selection process, during which thousands of applications were reviewed through multiple rounds of judging. The selection considered quantifiable metrics like growth and impact as well as qualitative factors that demonstrate true innovation and leadership in the field.

We're excited about this recognition not just as an award, but as a validation of our mission to transform cancer research through patient empowerment and technological innovation. With over 10,000 patients already contributing real-world data through our HealthTree Cure® Hub Registry, we're proving that when patients and researchers work together, we can accelerate the path to better treatments and cures.

Thank you to our entire community – patients, researchers, supporters, and team members – who make this work possible. This recognition belongs to all of us who believe in the power of patient-driven research to change the future of cancer care.

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Ready to Become a Cure Contributor?

Are you or a loved one affected by a blood cancer? Join thousands of others who are actively contributing to blood cancer research through the HealthTree Cure Hub® Registry. Sign up today and become part of the movement transforming cancer research.

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This Multiple Myeloma Awareness Month, we are announcing the launch of our new mobile app. Designed to bring the power of the HealthTree platform directly to patients' fingertips, the app enables users to access vital disease education, connect with a supportive community, and contribute to groundbreaking research – anytime, anywhere.

For years, HealthTree has been a trusted online resource for blood cancer patients, offering tools to help them navigate their diagnosis and treatment. Now, with the launch of the app, these essential resources are more accessible and convenient than ever before.

The platform links to comprehensive blood cancer education, including news, the HealthTree University video series, podcasts, webinars, patient guides, and patient navigators for each type of blood cancer.

The HealthTree app also enables connections to other patients for each specific blood cancer through its social media feature, HealthTree Connect, as well as with volunteer regional HealthTree Cure Teams and myeloma Coaches.

Notably, the HealthTree Cure Hub^® Registry is also included in the mobile app. The Cure Hub Registry invites patients to securely link their medical records into a centralized, patient-controlled hub to track their blood cancer, find their twin, search for personalized clinical trials, and contribute to research by completing surveys and participating in studies, helping advance cures for blood cancers. Through the app, patients can be notified when their medical records connections need to be renewed, making sure their data is up-to-date.

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Dave Bruacht, a myeloma patient, HealthTree Coach and beta app user said, \"The HealthTree app has been an indispensable tool in my coaching, seamlessly bridging the gap between complex health information and those I support. Its intuitive design on both my iPhone and iPad makes sharing vital resources incredibly efficient, truly amplifying my ability to educate and empower.\"
\n

!AD!

Experience the future of blood cancer care. Watch our exclusive app launch and demo to discover how HealthTree can transform your treatment journey. From having all your labs in one place to instant community support, see all the groundbreaking features in action!

Watch HealthTree App Demo

Download Now and Find Your Community

The all-new HealthTree app puts expert knowledge and a supportive community right in your pocket.

Available on App Store
Available on Google Play

!AD!

This announcement is the second of five technical innovations that HealthTree will reveal during Myeloma Awareness Month. Don't miss our next breakthrough - join us for Myeloma Monday!

$\"\"$

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Jenny Ahlstrom, founder of the HealthTree Foundation, was recently interviewed on The Pulse podcast. The episode, \"Pushing for Change,\" aired on February 14, 2025, and explores what motivates individuals to make a difference.

In the comprehensive interview, Jenny discussed how HealthTree's innovative platform allows blood cancer patients to input their medical history, treatment responses, and side effects, creating a valuable database for researchers. This patient-driven approach has already collected data from over 12,000 multiple myeloma patients, making it an invaluable resource for understanding treatment patterns and outcomes.

Listen to Jenny’s personal experience with multiple myeloma and how it led her to create HealthTree. Diagnosed in 2010, she discovered a critical gap in the availability of data-driven treatment options for patients like herself. This experience fueled her passion to establish HealthTree, a non-profit organization providing vital information and support to blood cancer patients and researchers.

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\"HealthTree can help researchers use best-in-class treatment options [for their patients] and can drive them towards cures,\" Ahlstrom stated in the interview. She further emphasized her dedication to patient support, adding, \"I love supporting patients. We just want faster cures, that's it!\"
\n

The Pulse, hosted by Maiken Scott, delves into the health and science world, exploring cutting-edge research and life-changing innovations. The episode featuring Jenny Ahlstrom also includes segments on the science behind effective protests and the ongoing debate surrounding water fluoridation.

Special thanks to Maiken Scott, Host and Executive Producer, and Producer Nichole Currie for their kindness and support.

About HealthTree Foundation

HealthTree is a global nonprofit organization using innovation to save lives. Our cutting-edge technology unites patients and researchers to help people with blood cancer live better and longer and leads the search for a cure.

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HealthTree Foundation celebrated excellence in blood cancer research by presenting its 2024 HealthTree Awards during a special reception at the American Society of Hematology (ASH) annual meeting in San Diego this December.

Dr. Rahul Banerjee of Fred Hutch Cancer Center received the inaugural HealthTree Innovation Award for his groundbreaking research on dexamethasone use and cataract severity in multiple myeloma patients. His work has made significant contributions to the \"down-with-dex\" movement in multiple myeloma care.

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\"Dr. Banerjee's work exemplifies the best of innovation and collaboration,\" noted Jay Hydren, HealthTree Senior Director of Research. \"His efficient research methods and targeted use of data sets have helped advance treatment standards and improve patient quality of life.\"
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The foundation also recognized several distinguished researchers with HealthTree Research Impact Awards for their outstanding contributions using the HealthTree Cure Hub^® Registry:

Dr. Urvi Shah (Memorial Sloan Kettering) for studies on diet, supplement use habits, and psychosocial aspects of blood cancer
Drs. Morie Gertz and Nadine Abdallah (Mayo Clinic) for research on delayed AL amyloidosis diagnosis
Dr. Malek Ehasan (Roswell Park) for machine learning applications in myeloma care
Dr. Sikander Ailawadhi (Mayo Clinic) for work on clinical trial awareness among multiple myeloma patients
Dr. Craig Hofmeister (Emory) and Dr. Karen Sweiss (UI Cancer Center) for research on pain management and the use of opioids
Dr. Manni Mohyuddin (Huntsman Cancer Institute) for studies on patient preferences in myeloma care

HealthTree Real-World Data Awards

A special recognition was given to researchers whose work using HealthTree's Real-World Data was accepted for presentation at ASH 2024. These recipients demonstrated the powerful impact of real-world data in advancing scientific discovery:

Dr. Malek Ehasan (Roswell Park Comprehensive Cancer Center)
Drs. Morie Gertz and Nadine Abdallah (Mayo Clinic)
Dr. Craig Hofmeister and Dr. Karen Sweiss (University of Illinois)
Dr. Sikander Ailawadhi (Mayo Clinic)
Dr. Rahul Banerjee (Fred Hutch Cancer Center)
Dr. Manni Mohyuddin (Huntsman Cancer Institute)

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\"These researchers demonstrate the incredible potential of real-world data to transform blood cancer research and treatment,\" said Jenny Ahlstrom, CEO and Founder of HealthTree Foundation. \"Their work brings us closer to our mission of finding cures through innovative research and collaboration.\"
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The awards ceremony highlighted the growing impact of HealthTree Cure Hub^® Registry, which now includes data from over 10,000 multiple myeloma patients and is expanding to lymphoma, leukemia, and myeloproliferative neoplasms, enabling vital research that advances patient care and accelerates the path to cures.

Are you a researcher? Click below to learn more about HealthTree's research and how to partner with us:

Visit HealthTree Research

!AD!

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Jenny Ahlstrom, CEO of HealthTree Foundation, continues to champion the foundation's mission and purpose through prominent media outlets. Most recently, she was featured on FOX News (KTVU, San Francisco), to kick off Blood Cancer Awareness Month.

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Watch the segment below as Jenny discusses how blood cancer patients and their families can actively contribute to groundbreaking research in simple, impactful ways, helping accelerate the search for cancer cures.

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!AD!

\n\n

About HealthTree Foundation

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HealthTree is a global nonprofit organization uniting patients and researchers through cutting-edge technology to work together on curing diseases. HealthTree provides lifetime personalized support and education, meaningful patient-to-patient connections, and a powerful patient data portal transforming patients and caregivers into active contributors in driving lifesaving breakthroughs.

\n\n

!AD!!AD!

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This April 21st, AML Awareness Day, we're taking a significant step forward in our mission to educate and empower the acute myeloid leukemia (AML) community. Whether you're newly diagnosed, supporting a loved one, or simply wanting to learn more about AML, we're here to help you understand this complex disease.

Understanding AML: The Basics

Before diving into our exciting new podcast announcement, if you're new to AML or need a refresher, we encourage you to explore our comprehensive educational resources:

What is AML? - Understanding the basics of acute myeloid leukemia
AML and Life Expectancy - Learn about the statistics, prognosis, and other frequently asked questions on AML survival
Common AML Signs and Symptoms - Learn to identify the common symptoms related to leukemia and its progression
Six steps for newly diagnosed patients - Steps to reduce your anxiety and take meaningful action

Announcing Our New Podcast Series: \"Exploring Breakthroughs & Equity in AML Treatment\"

The AML 2025 podcast season focuses on what matters most: knowledge, empowerment, and hope. Our mission is to help you take control of your care, understand your options, and advocate for the best possible treatment. Through in-depth conversations with leading experts, we're bringing the latest breakthroughs and essential insights directly to our community.

Four Episodes, Four Critical Perspectives

Episode One – When Should Treatment Start? What AML Patients Need to Know
Dr. Samuel Yates helps us break down new research on treatment timing and what it means for patients making critical care decisions.

Episode Two – Fighting AML in Young Patients: New Research & the Future of CAR-T
Join Dr. Emily Hsieh as we explore how treatment differs for pediatric AML patients and the promising research, including CAR-T therapy, that could change the game.

Episode Three – Young Adult AML: Understanding the Gaps & Closing Them
Dr. Erin Feliciano, an AML AYA researcher, discusses the unique challenges young adults face, the latest breakthroughs in treatment, and what's next on the horizon.

Episode Four – Clinical Trials: Myths, Facts, and What Patients Need to Know
Join our final episode, where we answer common patient concerns and bust myths and explain how trials work, who they're for, and why they're critical to advancing treatment.

Join Our Community

AML can feel overwhelming, but you're not alone. Connect with others who understand your journey through HealthTree Connect, our private social media platform for patients and their families. Here, you can:

Share experiences with others who understand
Access to resources by experts
Stay updated on the latest research

Join HealthTree Connect Today

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Unite for a Cause: Join Us in the Berkshires!

Are you a blood cancer patient, caregiver, or supporter looking to make a significant impact while challenging yourself in a stunning natural setting? We invite you to participate in the HealthTree Challenge: Hike and Wellness event, happening in the beautiful Berkshires of Massachusetts from October 23-25, 2025.

This event is specially designed to combine physical endurance, wellness, and community support while supporting blood cancer research.

With a limited number of spots available, we encourage you to apply early to secure your place. Learn more about the event details and registration below.

A Weekend of Wellness and Resilience

This unique event isn't just a hike; it's a retreat dedicated to overcoming obstacles, building resilience, and creating lasting impacts. As a participant, you’ll engage in:

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Wellness Activities: Enjoy expert-led sessions that nurture your mind and body for a comprehensive health approach. These activities include meditation, yoga, skill building, healthy eating, and stress management techniques.
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Community Connection: Meet and bond with other individuals who are passionate about supporting blood cancer patients and their families.
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Scenic Endurance Hike: Challenge your limits with a trek across the breathtaking Berkshire landscapes. Multiple trail options are available. To help you get ready, HealthTree provides an optional 12-week training program.
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Your Fundraising Impact

By joining the HealthTree Challenge, you commit to raising $1,500, which will directly contribute to vital research and resources for blood cancer patients. This fundraising effort is pivotal in providing help where it is most needed.

To aid you in these efforts, you’ll receive comprehensive fundraising support to help you reach—and possibly exceed—your financial goal. Our team is here to guide and support you every step of the way!

Join Our Community

This event is designed for a limited group of 50 dedicated individuals ready to make a difference. Whether you are a survivor, a caregiver, or a supporter, your participation will turn strength into action. This is more than just a hike; it's a statement of solidarity and a commitment to a cause that affects so many lives.

Ready to Sign Up?

Click the button below to register today and join us in making a difference for the blood cancer community. We can’t wait to welcome you to the Berkshires this October for an impactful weekend!

!AD!

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We are excited to announce the launch of the HealthTree Regional Cure Teams—an opportunity for patients, caregivers, and passionate individuals to volunteer and make a difference in their communities.

With Cure Teams, you can join a network of like-minded people who share a common goal: contributing to a cure for blood cancer while creating meaningful connections.

What Are HealthTree Regional Cure Teams?

HealthTree Regional Cure Teams are volunteer-driven groups focused on making an impact locally. Each team is tailored to the specific needs, challenges, and resources of its region.

The Cure Teams will be divided into the following regions:

!AD!

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Pacific
Rocky Mountain
Midwest
Southwest
Northeast
Southeast

No matter where you live, there’s a Cure Team for you.

How You Can Make a Difference

As a member of a HealthTree Regional Cure Team, you’ll have the chance to contribute in meaningful ways—big or small, every effort counts.

Grace, from the Pacific region, hosted her own fundraiser for HealthTree. Her friends and family gathered to celebrate her and contribute financially to blood cancer research.

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Here are examples of what you could do as a Cure Team member:

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Spread Awareness: Share HealthTree’s resources with your local community to empower others with the knowledge and tools they need.
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Expand the Cure Hub® Community: Invite local patients and caregivers to join HealthTree Cure Hub® Registry, a groundbreaking tool that unites patients, researchers, and clinical data to work toward a cure.
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Support Fundraising Efforts: Organize your own fundraiser or lend a hand in ongoing efforts in your region. Every dollar raised directly supports critical blood cancer research and patient initiatives.
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Connect with Others: Join outreach efforts to support Black, Hispanic, and rural patients who often face barriers in accessing adequate care and resources.
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Represent HealthTree: Attend local health events as an ambassador, helping to build awareness and create impactful partnerships.
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Join a Cure Team

This is an opportunity to contribute to something meaningful while working alongside a community that’s as driven as you are.

!AD!

Program Manager, Taryn Placko, shares more about cure teams below:

Do you have questions? Send an email to cureteams@healthtree.org or text/call +1 800 709 1113.

Written in collaboration with Sofia Capdevila

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With so much information about treatment options, understanding the world of chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) therapies can feel overwhelming, especially when you are first diagnosed.

Knowing this, our team (including HealthTree staff, patients and caregivers, and specialists) has worked to create a new and free educational guide about CLL/SLL treatments.

Access the Free CLL Therapy Guide

How Can the CLL Therapy Guide Help You?

We’ve intentionally created this guide to answer questions that you might have about your CLL treatments.

You can find answers in the guide to common questions, such as:

How do standard CLL therapies work, and how effective are they?
What are things I should consider when selecting a treatment?
What is the chance I’ll experience a side effect from therapy, and how do I manage it?
How can I access financial resources for CLL treatments?

These questions and many more are answered in the guide.

The guide’s comprehensive content is organized into digestible sections, which you can read at your own pace.

How Can I Read the Guide?

Click the button below to access this free resource. Doing so can help you become more informed about your treatment options. As you become more involved in your care, your options will increase, and your quality of life is likely to improve.

Access the CLL Therapy Guide

The guide will be updated over time to continue improving its content, for example, when new treatments become FDA-approved.

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In the journey of understanding acute myeloid leukemia (AML), knowledge is power. HealthTree University for AML is a groundbreaking platform offering free access to a wealth of information through expert-led video lessons. Designed for patients and their loved ones, this resource demystifies the complexities of AML, empowering individuals with the insights needed to navigate their health journey.

By creating a free account on HealthTree University, users can track their progress, bookmark favorite videos, and take notes, enhancing their learning experience.

explore healthtree university for aml

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One of the critical topics covered in our video series is the impact of AML on fertility in both men and women. These interviews provide invaluable perspectives from leading experts, offering a glimpse into the challenges and considerations patients face.

Understanding Fertility Challenges in AML

In this insightful session, experts delve into the specific ways AML and its treatments can affect fertility. Viewers will gain a deeper understanding of the biological impacts and the importance of early discussions with healthcare providers. It is important to learn how AML treatments can also affect men's fertility.

Preserving Fertility: Options and Strategies

This video explores the various options available for preserving fertility before, during, and after AML treatment. It highlights the latest advancements and strategies, providing options and guidance for those looking to maintain their reproductive health.

Discuss Your Fertility with Your Medical Team

When diagnosed with AML, discussions about fertility might not be the first priority. However, it's important to address this topic. Your doctor will have this information or can refer you to an expert who can discuss your options. If it's something you want to learn more about, watch this video and make sure to ask the right questions during your visits.

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HealthTree University ensures that patients and caregivers are not just passive recipients of information but active participants in their educational journey. Visit HealthTree University today to explore these videos and more and take the first step towards empowering yourself with knowledge about acute myeloid leukemia.

go to healthtree university

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On July 10th, as part of HealthTree’s Webinar Program, Electra Paskett, PhD, from Ohio State University, shared how patient navigators can help you overcome barriers to accessing healthcare. Watch the event's recording below or read the summary.

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What Obstacles Do Patients Face to Accessing Healthcare?

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Patients often face obstacles when trying to receive healthcare. Some of these include:

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Financial/insurance issues
Transportation
Language barriers
Cultural fear or distrust of doctors
Difficulty navigating the healthcare system
Lack of access to basic needs like food, shelter, and utilities.

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These barriers can have several negative impacts such as patients not attending appointments, not getting the treatment they need, and experiencing poor health-related outcomes.

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How Can Patient Navigators Help You Overcome These Barriers?

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A patient navigator is a trained professional who can help you overcome obstacles keeping you from accessing healthcare.

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Examples of services a patient navigator can assist with include:

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Helping you find transportation to appointments
Locating financial assistance to cover your medical costs
Translating doctor appointments into your native language
Reaching out to re-schedule a missed appointment

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Audience Q&A

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During the event, Dr. Paskett answered several questions. Some of these included:

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[37:17] Do most hospitals have patient navigators?
[40:00] What is the training process to become a patient navigator?
[42:31] Are patient navigator services free to patients?

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Click the timestamp links to listen to the answers to these questions in the event’s recording.

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Conclusion

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In conclusion, patient navigators can help patients like you overcome obstacles associated with accessing healthcare. To review if your healthcare facility has a patient navigator, please ask your doctor.

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Become a Cure Contributor by Joining HealthTree Cure Hub!

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We invite you to click the button below to create your free HealthTree Cure Hub account. This will provide you access to several helpful resources, such as participating in research-accelerating surveys, finding side-effect solutions, accessing clinical trials, and more!

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CREATE YOUR FREE HEALTHTREE CURE HUB ACCOUNT

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Can adding ibrutinib make CAR T-cell therapy more effective for people with CLL? Discover promising study results and find out how you may be able to participate.

Liso-cel’s impact when used alone for CLL

Liso-cel (Breyanzi, BMS) is an FDA-approved CAR T-cell therapy for people with CLL who have already been treated with both a BTK inhibitor and a BCL-2 inhibitor.

In these patients, liso-cel alone achieves a 44% overall response rate, indicating some level of cancer reduction. Among them, 20% experience a complete response, meaning their cancer cells are fully reduced, and their spleen and lymph nodes return to normal size after treatment.

Combining liso-cel with ibrutinib for better outcomes

To enhance the effectiveness of liso-cel for CLL, William G. Wierda, MD, PhD, from M.D. Anderson Cancer Center led research efforts to combine it with ibrutinib (Imbruvica, Johnson & Johnson) in the TRANSCEND CLL 004 trial for patients with relapsed/refractory CLL/SLL.

This decision was based on promising results seen in other CD19 CAR T-cell therapies used alongside ibrutinib. One key benefit of this combination is its ability to improve the function and expansion of CAR T-cells, which is essential for achieving and maintaining remission.

Dr. Wierda presented the trial’s encouraging results at the 2024 ASH conference. They showed:

Overall response rate: 86%
Complete response rate: 45%, significantly higher than with liso-cel alone
Undetectable minimal residual disease (uMRD4): Cancer cells were undetectable in 86% of patients’ blood samples using highly sensitive tests
Duration of response: Among patients who responded, remission lasted an average of 41.4 months, demonstrating long-term effectiveness

The side effects reported in the study were similar to those typically seen with ibrutinib or liso-cel. These included low blood cell counts that required hospital monitoring, mild to moderate cytokine release syndrome, fatigue, headache, diarrhea, and nausea. Study specialists noted that these effects were manageable with supportive care.

Importantly, serious heart-related side effects, which are seen with ibrutinib alone, were less frequent when it was combined with liso-cel. This suggests the combination did not increase heart risks.

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Summary

The combination of liso-cel with ibrutinib showed encouraging results, with higher response rates and longer-lasting remission compared to liso-cel alone. These findings offer valuable insight for people with relapsed or refractory CLL exploring additional treatment options.

If you're interested in this approach, review your eligibility to join the TRANSCEND CLL 004 trial or consult your CLL specialist.

Expanding pirtobrutinib’s role beyond bypassing BTK resistance

Although much of the discussion around pirtobrutinib (Jaypirca, Eli Lilly) has centered on its ability to extend BTK inhibition for patients with resistance to covalent BTK inhibitors, emerging data suggest that it may be highly effective for those who have never been treated with covalent BTK inhibitors.

This raises the possibility of pirtobrutinib becoming a front-line therapy, potentially changing the standard of care for people with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL).

Pirtobrutinib’s effectiveness for high-risk patients not treated with covalent BTK inhibitors

Recent research indicated that pirtobrutinib provides exceptional responses in patients who have not previously received covalent BTK inhibitors, even among those with high-risk features.

The study reviewed 35 patients who received an average of two prior treatments, including either chemotherapy, venetoclax, anti-CD20 antibodies, or other systemic therapies.

The results were highly promising, with the following patient groups experiencing a partial or full reduction of CLL cells (overall response rate [ORR]):

17p deletion CLL: 100% ORR
TP53-mutated CLL: 85.7% ORR
Unmutated IGHV CLL: 90.0% ORR
Complex karyotype CLL: 100% ORR

At the 24-month follow-up since starting pirtobrutinib, 81.8% of patients maintained cancer control, and 88% were alive. Additionally, only 5.7% of patients required treatment discontinuation due to side effects or cancer progression—an impressive improvement compared to the 50% discontinuation rate observed with ibrutinib in other studies.

Moving pirtobrutinib to front-line CLL treatment

Given these findings, researchers are now exploring whether pirtobrutinib could serve as a first-time treatment for CLL/SLL patients, shifting its role beyond a third-line option. This has led to the launch of phase 3 clinical trials investigating it as a standalone treatment for newly diagnosed patients.

The BRUIN CLL-313 trial is evaluating pirtobrutinib by itself as the first treatment for CLL/SLL patients.
The BRUIN CLL-314 trial is reviewing pirtobrutinib as a standalone treatment for individuals with CLL/SLL as their first therapy or for those who have not previously received BTK inhibitors.

These studies could redefine pirtobrutinib’s place in the treatment landscape, potentially establishing it as a first-line option for patients who have not previously been treated with covalent BTK inhibitors. As more data emerges, this new approach could significantly impact future CLL/SLL therapy strategies.

Although the above phase 3 studies are active but not recruiting, ask your CLL specialist about innovative treatments available in clinical trials or discover them here.

We need your help! Easily contribute to CLL research

If you are living with CLL, we need your help improving patient outcomes for all by taking simple, anonymous surveys that contribute to real-world research in HealthTree Cure Hub®. Click the buttons below to get started and see the current impact of this research!

Make an Impact with Brief CLL Surveys

See Patients’ Progress: Research Results News

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Sources:

Acute myeloid leukemia (AML) is a type of blood cancer that mostly affects older people, but in rare cases, it also affects children. Researchers are continually working to improve treatment options, and recent studies have expanded the uses of gemtuzumab ozogamicin (Mylotarg), a targeted therapy, to regimens for children with this condition.

The MyeChild 01 Trial

The MyeChild 01 trial included 515 pediatric patients, the vast majority with newly diagnosed acute myeloid leukemia. During their first course of chemotherapy, patients received either one or three doses of gemtuzumab ozogamicin. Additional chemotherapy was administered in high-risk cases. The study aimed to determine whether multiple doses could improve survival without increasing side effects.

The trial found that 94% of patients achieved complete remission after their first or second course of chemotherapy. Only 6% of patients did not respond to treatment. The two-year overall survival rate for patients in the study was 88%.

The risk of death for those who achieved a first complete remission was lower, but 25% still experienced a relapse within two years. When comparing 1 vs 3 doses of Gemtuzumab, those who received 3 doses are estimated to stay in remission and alive (event-free survival and overall survival) significantly longer than those who received only 1 dose.

What Are the Side Effects of Gemtuzumab Ozogamicin?

The safety profile of gemtuzumab ozogamicin was closely monitored. Nearly 60% of patients experienced at least one serious side effect, consistent with expected chemotherapy-related complications. Nine patients developed severely elevated bilirubin levels, and two experienced blood clots in the liver veins (veno-occlusive disease, or VOD). This finding is important because VOD is a common side effect with the standard single dose. Notably, increasing the dosage to three doses did not lead to a higher rate or worsening of side effects..

What This Means for Patients and Families

Researching new applications of gemtuzumab ozogamicin in pediatric acute myeloid leukemia (AML) has shown encouraging results in terms of remission rates and survival. The standard use is especially convenient as it is administered as a single dose. Moving forward, it is important to continue refining the treatment strategy, focusing on dosage, drug combinations, and side effect management, to further improve outcomes in AML alongside standard chemotherapy.

Understanding the Therapies Helps Make Better Choices

Discussing all available treatment options with your healthcare team is essential to improving self-advocacy. They can help you choose suitable options based on individual health factors and disease characteristics.

Clinical trials continue to refine and improve treatment strategies, opening new possibilities for pediatric patients facing this challenging diagnosis. If you want to learn more about treatment options and clinical trials further, you can create an account in HealthTree and start exploring all our free resources.

CREATE MY FREE ACCOUNT

Source:

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Favourable Outcomes in Newly Diagnosed Paediatric AML with Gemtuzumab Ozogamicin and Risk-Stratified Therapy: Results from the International Phase III Myechild 01 Trial
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If you or a loved one is navigating a blood cancer diagnosis, understanding how ROR1-targeted therapies work—and whether they could apply to your specific cancer type—can help you make more informed treatment decisions.

Main points:

ROR1 is a receptor found on the surface of cancer cells, rarely present in healthy adult cells, making it a promising treatment target for various blood cancers.
Early studies show that therapies targeting ROR1—such as CAR T-cell therapy, monoclonal antibodies, and small molecule inhibitors—may be effective in certain blood cancers like CLL and MCL.
Combining ROR1-targeted therapies with other treatments like venetoclax may help overcome drug resistance and improve patient outcomes.

In the sections below, continue reading to learn how these therapies are being tested, which blood cancers they may benefit most, and what early research is revealing about their potential to improve outcomes.

What Is ROR1 and Why Does It Matter for Blood Cancer Patients?

Receptor tyrosine kinase-like orphan receptor 1 (ROR1) is a protein that plays a role in early development. In adults, it's mostly inactive—but in several cancers, including chronic lymphocytic leukemia (CLL) and mantle cell lymphoma (MCL), ROR1 is turned back on and helps cancer cells grow and survive.

Because healthy adult tissues show little to no ROR1 activity, therapies that target it are less likely to harm normal cells. This makes ROR1 an appealing focus for developing more precise cancer treatments with fewer side effects.

For other blood cancers like multiple myeloma, acute myeloid leukemia (AML), and large B-cell lymphoma (LBCL), researchers have found ROR1-positive cancer cells in some patients. Early lab studies suggest that targeting ROR1 might help, but more research is needed to know how well these treatments work in real-life settings.

Clinical Trial Treatment Options That Target ROR1

Several types of therapies are being developed to block ROR1 and stop its cancer-supporting activity:

Monoclonal antibodies like cirmtuzumab designed to attach to ROR1 on cancer cells and block its signals. Early trials show this approach may be effective when combined with other treatments like venetoclax, which targets another cancer-promoting protein, BCL-2.
Small molecule inhibitors such as KAN0441571C are designed to enter cancer cells and shut down ROR1 from the inside. These are showing potential, especially in patients whose cancers resist standard therapies.
Antibody-drug conjugates (ADCs) like zilovertamab vedotin deliver chemotherapy directly to ROR1-positive cells, limiting damage to healthy cells. Click here to access a recruiting clinical trial for relapsed/refractory CLL, MCL, and follicular lymphoma patients.
CAR T-cell therapy that modifies a patient’s own immune cells to target ROR1-positive cancer cells. This approach is still in early testing.
Bispecific antibodies engineered to bring T-cells into close contact with cancer cells that express ROR1, helping the immune system do its job more effectively.

Why Combination Therapies Could Be the Future

One of the biggest challenges in blood cancer treatment is drug resistance—when cancer stops responding to treatment. Studies suggest that using a combination of therapies that target different pathways can reduce the risk of resistance.

For example, combining anti-ROR1 therapies with venetoclax may work better than either alone. This is especially important for people with high-risk or relapsed disease.

Bottom Line

If you’re living with CLL, MCL, or another ROR1-positive blood cancer, the development of ROR1-targeted therapies could eventually offer more effective and less toxic treatment options. While many of these therapies are still in clinical trials, early results are promising and could lead to new standard-of-care treatments in the future.

As research continues, it’s important to stay informed about clinical trials and emerging therapies. Talk to your doctor about whether any new treatment options may be appropriate for your specific situation.

Continue Exploring Advancements in Blood Cancer Treatments

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Source:

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Therapeutic advances in the targeting of ROR1 in hematological cancers
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Acute myeloid leukemia (AML) is an aggressive type of blood cancer that mainly affects the elderly, and in rare cases, it can also appear in children. It is a complex disease that involves different mutations. Sometimes, these mutations can predict if a patient is prone to relapse (meaning that the disease comes back after a period of time) or to be refractory (after a few treatments, the AML comes back, and previous therapies lose efficacy against it).

That’s why research for new therapies that work on relapsed and refractory AML is important; that way, people can remain disease-free for longer periods.

Uproleselan (GMI-1271) is a treatment designed to block a molecule that plays a role in leukemia cell survival and resistance to chemotherapy. Its intended purpose is to enhance the effectiveness of chemotherapy.

In this article, you’ll learn recent updates on the phase 3 clinical trial with uproleselan. This trial aims to further evaluate uproleselan in combination with chemotherapy compared to chemotherapy alone in patients with relapsed or refractory acute myeloid leukemia.

Chemotherapy With or Without Uproleselan

The study, presented at the 2024 ASH conference, included 388 adult patients with AML in either the first or second relapse and who were eligible for chemotherapy.

Participants were randomly assigned to receive either uproleselan with chemotherapy or chemotherapy alone. The primary goal of the study was to assess overall survival, with additional measures including side effects, complete remission, and depth of response.

Key Findings

The median overall survival (OS) was 13 months for the group receiving uproleselan and 12.3 months for the group receiving chemotherapy alone.
46.4% of people who received uproleselan had an overall remission, compared with 41.2% of people who received chemotherapy alone.
Minimal residual disease (MRD) was negative in 67.1% of those treated with uproleselan and 61.5% of the chemotherapy-alone group.
In patients who received a stem cell transplant, overall survival was longer in the uproleselan group, with the median survival not yet reached, compared to 24.8 months in the chemotherapy-alone group.
7.2% of patients had inflammation of gums evaluated as a severe side effect.

How Did Patients with Primary Refractory AML Respond?

A subgroup of patients with primary refractory acute myeloid leukemia whose initial treatment wasn’t as effective showed notable improvements with uproleselan.

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The median overall survival for these patients was 31.2 months in the uproleselan group compared to 10.1 months in the chemotherapy-alone group.
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The duration of response for those who achieved remission was not yet reached for those receiving uproleselan, while it was 12.7 months for those receiving chemotherapy alone.
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Among patients who underwent stem cell transplantation, survival at 60 months was 57.5% for those treated with uproleselan and 27.7% for those in the chemotherapy-alone group.
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Final Thoughts

Although this study found no significant improvement in survival with uproleselan, the overall survival was longer in the uproleselan group when they received a stem cell transplant. The side effects weren’t much different between the two groups.

However, the findings suggest meaningful benefits for patients with primary refractory acute myeloid leukemia. The improved survival outcomes and deep responses in this subgroup highlight the potential role of uproleselan in addressing the needs of patients who have limited treatment options. The frequency of side effects was similar between the uproleselan and chemotherapy-alone groups.

Learn more about new AML treatment options on our news site.

Keep Reading More Articles

Source:

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Efficacy and Safety of Uproleselan Combined with Chemotherapy Vs. Chemotherapy Alone in Relapsed/Refractory Acute Myeloid Leukemia: Findings from an International Phase
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","language":"EN","metaDescription":"Learn how uproleselan may improve treatment outcomes for relapsed or refractory acute myeloid leukemia patients in this latest clinical study.","metaTitle":"Uproleselan for Relapsed/Refractory AML ","publishedAt":{"_type":"Date","value":"Sun Feb 16 2025 07:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"uproleselan, acute myeloid leukemia, AML treatment, relapsed AML, refractory AML, chemotherapy resistance, clinical trial, leukemia survival, AML research, stem cell transplant","slug":"ash-24-uproleselan-for-relapsed-refractory-aml","status":"ACTIVE","title":"Findings from an International Phase 3 Trial: Uproleselan for Relapsed/Refractory AML","updatedAt":{"_type":"Date","value":"Mon Mar 10 2025 21:23:28 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:35:12 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"},{"_type":"DocumentReference","path":"diseases/essential-thrombocythemia"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"clinical-trials","sectionConfig":{"news":{"description":"Our Clinical Trials articles highlight top clinical trials, their results, and how patients can participate in them.","metaDescription":"These articles highlight top clinical trials, their results, and how patients can participate in them.","metaTitle":"Clinical Trials - HealthTree Foundation","order":7,"tileOrder":4,"type":"SMALL_TILE"}},"sections":["NEWS"],"slug":"clinical-trials","status":"ACTIVE","title":"Clinical Trials","updatedAt":{"_type":"Date","value":"Thu Apr 25 2024 18:37:47 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"},"snapshot":{"exists":true,"id":"hUncpyMvyuZCF2qvA0Cv","ref":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/CGVbuIld30lFKmIODOBB"},"snapshot":{"exists":true,"id":"CGVbuIld30lFKmIODOBB","ref":{"_type":"DocumentReference","path":"apps/community/articles/CGVbuIld30lFKmIODOBB"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/dtN24frUcPS1CRElyXh1"},"category":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"},"createdAt":{"_type":"Date","value":"Wed Feb 12 2025 22:30:19 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/cll"},"diseases":[{"_type":"DocumentReference","path":"diseases/cll"}],"headerImageUrl":"https://healthtree.org/images-resize?imageUrl=https%253A%252F%252Ffirebasestorage.googleapis.com%252Fv0%252Fb%252Fhealthtree-production.appspot.com%252Fo%252Fgallery%25252Fpublic%25252Fshutterstock_2078558725_42c4b8d0-2854-4948-9fe5-9d4d2f78cb98.jpg%253Falt%253Dmedia","htmlContent":"

Explore recent updates on clinical trials investigating BTK degraders for chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL).

BTK Degraders for CLL/SLL

BTK degraders represent a new class of medicines currently being studied in clinical trials for the treatment of CLL/SLL.

Unlike traditional BTK inhibitors that only block the activity of the BTK (Bruton's tyrosine kinase) protein, BTK degraders are designed to completely eliminate the protein. This approach aims to halt the growth of CLL cells, including those resistant to BTK inhibitors caused by BTK mutations, potentially overcoming resistance and offering a more durable treatment option for CLL patients.

Ongoing research is exploring various BTK degraders for CLL, with several study updates presented at the 2024 ASH conference. In the article below, we've summarized the key takeaways, so you can stay informed about the newest advances in CLL treatment. If you'd like to explore more articles like this one, don't forget to visit HealthTree News for valuable information and support.

BTK Degraders NX-2127 and NX-5948

A phase I study explored the BTK degraders NX-2127 and NX-5948 (Nurix Therapeutics), providing valuable insights into their potential for treating CLL and their impact on the immune system.

Phase I trials are designed to assess a treatment's safety, determine the appropriate dosage, and evaluate its initial effectiveness against the cancer. To learn more about how clinical trials work, click here.

In this study, both NX-2127 and NX-5948 were shown to degrade BTK in CLL cells. Additionally, NX-2127 demonstrated a unique benefit: it enhanced the function of patients' cancer-fighting T-cells, helping to reverse the immune suppression commonly seen in individuals with CLL. This effect was not observed with NX-5948. These promising findings support further research into BTK degraders for CLL treatment.

If you are interested in joining the study to receive NX-2127, click here to review your eligibility.

Watch an interview with Alexey Danilov, MD, PhD, from the City of Hope Cancer Center, as he shares updates on these BTK degraders.

BTK Degrader BGB-16673

The phase 1 CaDAnCe-101 trial evaluated the BTK degrader BGB-16673 in 49 patients with CLL/SLL. In the patient group, 63% of patients had the high-risk type del(17p)/TP53 mutation, and 82% of patients had unmutated IGHV.

Before receiving BGB-16673, patients had undergone an average of four prior therapies, such as BCL-2 inhibitors, covalent BTK inhibitors, and non-covalent BTK inhibitors. Treating this group of patients with BTK degraders underscores the importance of introducing a new treatment option for those who cannot use other drug classes due to BCL-2 or BTK mutations.

How Effective is BGB-16673 for Relapsed/Refractory CLL/SLL?

This study is still ongoing, but 7.9 months after starting treatment:

Overall response rate:\n
- 78% of patients experienced a partial or full reduction in cancer signs and symptoms
- When the dose was increased to 200 mg, the overall response rate rose to 94%
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Time to response: On average, patients began to see results within 3 months
Effectiveness in different patient groups: The treatment was effective in patients with and without prior BTK mutations
Safety: Most patients experienced mild to moderate side effects, commonly including fatigue, bruising, lower white blood cells (increased risk of infections), and diarrhea

Early results from the CaDAnCe-101 trial suggest that BGB-16673 is both effective and safe, even in patients who have undergone multiple prior treatments or experienced Richter transformation.

The study is ongoing for patients with CLL/SLL who have previously received a BTK inhibitor (ibrutinib, acalabrutinib, or zanubrutinib) and venetoclax. If you are interested in joining and receiving BGB-16673, click here to check your eligibility.

Summary

Research updates from the 2024 ASH conference spotlight the potential of BTK degraders as a new treatment for CLL and SLL. Unlike traditional BTK inhibitors, which block BTK activity, these degraders eliminate the BTK protein entirely, offering a promising solution to overcome treatment resistance.

Early-phase clinical trials of BTK degraders—such as NX-2127, NX-5948, and BGB-16673—have shown encouraging results. These include effectiveness against CLL/SLL and manageable side effects, even in patients who are heavily pretreated or considered high-risk.

If you would like to receive a BTK degrader, click one of the trial page links above or consult your CLL specialist to explore clinical trials you may qualify for.

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How Revumenib Works

Revumenib is a potent, oral, selective inhibitor of menin (a tumor suppressor protein). It prevents menin from binding to the KMT2A gene.

Revumenib in an All-Oral Treatment Combination for Children Over 12 and Adults

We’ll first review the phase I/II study of revumenib with decitabine/cedazuridine and venetoclax (the SAVE study) in relapsed/refractory AML (NCT05360160).

This trial allowed patients older than 12 years old to participate, but the study is still ongoing. The median age was 35 years (range, 12-79 years), including 5 children. Patients received ASTX727 (decitabine/cedazuridine): 35 mg/100 mg PO daily on days 1-5, and venetoclax: 400 mg PO daily on days 1-14. Revumenib doses varied between patients to find the one that works best.

The Study Results

The overall response rate was 88%, with 74% achieving MRD negativity
Twelve patients were able to undergo stem cell transplant
Six months after starting treatment with revumenib, 59% were in remission, and 74% were alive

Most common side effects included alterations in the electrocardiogram (QT prolongation in 58% of patients), liver enzyme elevation, and low white blood cell counts with fever (febrile neutropenia).

These promising results support further investigation in newly diagnosed patients.

An Ongoing Study for Relapsed/Refractory Acute Leukemias

The AUGMENT-101 Phase 2 study is an ongoing trial that evaluates revumenib, a selective menin inhibitor, as a treatment for relapsed or refractory acute leukemias with KMT2A rearrangements (KMT2Ar). The study represents the largest evaluation of menin inhibition in this patient population to date.

A total of 116 patients received at least one dose of revumenib; 24% of patients were pediatric. Among 97 evaluable patients, the study demonstrated promising response rates and MRD negativity:

The overall response rate was 64%
23% of patients achieved complete remission that lasted for at least 2 months, and for the majority, more than 6 months
58% of all responders achieved MRD negativity
Of those responding to the treatment, 34% of patients could receive a stem cell transplant after therapy, and nine patients resumed revumenib treatment as maintenance

The most common severe side effects were febrile neutropenia, anemia, and low platelet counts. Investigators are also closely monitoring patients who can experience differentiation syndrome (15%) and alterations in their heartbeat (13%).

Final Thoughts

The latest research on revumenib highlights significant progress for relapsed/refractory acute leukemia with KMT2A rearrangements. Offering the potential for patients to undergo curative treatments like stem cell transplantation. However, research is ongoing, and continued patient participation in trials is essential to compare revumenib to other standard treatments and study long-term outcomes.

Your participation in clinical trials might not only offer you access to cutting-edge treatments but also contribute to improving care for future patients. That’s why HealthTree helps you every step of the way with the multiple free resources Cure Hub Registry offers, like exploring personalized clinical trial options, tracking labs and past treatments, and so much more!

Join Cure Hub Now

Empower yourself! Both patients and caregivers can take charge of their treatment and care by staying informed. Click here to read more exciting Leukemia news!

Brexucabtagene autoleucel (Tecartus), also known as brexu-cel, is a chimeric antigen receptor (CAR) T-cell therapy designed to target CD19-positive leukemia cells. It is approved for adult patients with relapsed or refractory B-cell precursor acute lymphoblastic leukemia (ALL) and relapsed or refractory mantle cell lymphoma (MCL). While this treatment has shown good results for younger patients, data on its safety and efficacy in older people remains limited.

In this article, we’ll dive into the results presented at the 66th annual ASH conference. The study, conducted through the Real-World Outcomes Collaborative for CAR-T in Acute Lymphoblastic Leukemia (ROCCA), is the largest to date evaluating brexu-cel in patients aged 60 years or older.

Study Details

280 patients participated and received brexu-cel, and 26% were 60 or older. They had undergone a median of three prior lines of therapy, including:

Allogeneic hematopoietic stem cell transplantation: 38%
Inotuzumab ozogamicin (BESPONSA): 41%
Blinatumomab (Blincyto): 62%

Treatment Response

Before receiving brexu-cel, 45% of patients had active disease, 47% were in complete remission, of whom 14 showed no measurable residual disease.

After receiving brexu-cel, 59% of patients achieved MRD-negative complete remission, and 27% had complete remission with detectable disease.

Brexu-cel Benefited Patients of All Age Groups

The overall response rate was consistent across age groups. For instance, the MRD (measurable residual disease)-negative complete remission was 58% in patients aged 60-69 and 61% in patients aged 70 years or older. These results are comparable to those registered in patients younger than 60 years, with a measurable residual disease-negative complete remission rate of 66% and a refractory disease rate of 9%.

No significant differences were observed in overall survival or progression-free survival at 6 months between age groups.

Side Effects of Brexucabtagene Autoleucel by Age

Immune effector cell-associated neurotoxicity syndrome (ICANS) was more frequent in patients aged 70 years or older (77%) compared to 60-69 years (47%) and younger than 60 years (49%). And cytokine release syndrome rates were comparable across all groups.

Conclusion and Future Directions

This study represents the largest real-world analysis of brexu-cel treatment in older adults with relapsed or refractory B-cell acute lymphoblastic leukemia. The results suggest that patients aged 60-69 years have comparable outcomes to younger patients, while those aged 70 years or older might have a shorter progression-free survival and higher rates of low-grade immune effector cell-associated neurotoxicity syndrome.

This study also found important insights to consider when evaluating treatment response. Also, future studies should include patients aged 70 years or older (considering their health status and previous treatments as for all patients) and the need for further research to optimize CAR-T cell therapy strategies for older adults, ensuring both safety and effectiveness.

Age is no longer a limiting factor in most current therapies. By understanding the unique challenges and potential benefits of CAR-T, all options should be discussed and considered with your medical team, considering not only chronological age but biological age and real patient fitness.

If you want to keep learning more about news on treatments, clinical trials and conferences you can bookmark the HealthTree News site and browse through our different article categories.

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Efficacy and Safety of Brexucabtagene Autoleucel for Relapsed/Refractory B-Cell Acute Lymphoblastic Leukemia in Patients Aged 60 and Above
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Medical researchers at MD Anderson Cancer Center are conducting a significant clinical trial exploring an innovative strategy: combining a newer targeted therapy, venetoclax (Venclexta, AbbVie), with traditional chemotherapy medications in younger patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (MDS). With nearly 100 participants enrolled so far, this ongoing Phase II trial set out to answer a crucial question: could this combination approach improve outcomes for patients who historically faced challenging prospects?

The interim results, which include both short-term responses and early long-term survival data, offer valuable insights for patients and healthcare providers considering their treatment options. The findings summarized below are particularly relevant for those who might be candidates for subsequent stem cell transplantation, a potentially curative procedure for these blood cancers.

Ongoing Study Shows High Remission Rates in Younger AML Patients

The phase II ongoing trial (NCT02115295) enrolled 95 patients with a median age of 49 years old who were newly diagnosed with:

Acute myeloid leukemia (90%)
Mixed phenotype acute leukemia (3%)
High-risk myelodysplastic syndrome (7%)

We had the opportunity to interview the lead investigator of this study, Dr. Tapan Kadia, who shared insights into the study results.

How Effective Was the Combination?

Patients received one to six cycles, with a median of one cycle required to achieve remission
93% of patients achieved a complete response
Overall response rate of 95%
82% of AML patients who achieved a composite complete response were also MRD negative
For AML, the relapse-free survival was 78% at one year, and for MDS, it was 86%
The 2-year probability of survival was estimated at 73% for AML and 100% for high-risk MDS patients

What Were the Most Common Side Effects?

All patients experienced low blood counts during treatment, which is expected with intensive chemotherapy. This led to:

Neutropenic fever (high temperature due to very low white blood cell counts) in about 8 out of 10 patients
A recovery period of approximately 4 weeks for blood counts to return to safer levels
Need for close monitoring and supportive care during this time

Other significant side effects included:

Infections: About 3 in 10 patients developed bloodstream infections, and 2 in 10 developed pneumonia
Gastrointestinal: About 1 in 7 patients experienced inflammation of the bowel (colitis)
Liver: Some patients showed temporary changes in liver function tests

Importantly, despite these side effects, the treatment was generally manageable with proper medical care, with very low treatment-related mortality (2% within the first two months). Patients received preventive medications and growth factors to help manage these side effects.

The Importance of New Treatment Combinations

Using new treatment combinations can increase the number of patients with different diagnoses who can receive a treatment that quickly and effectively controls their cancer cells.

The combination of venetoclax with CLIA chemotherapy demonstrated high effectiveness in younger patients with newly diagnosed acute myeloid leukemia and high-risk myelodysplastic syndrome. It offered participants the chance to achieve a deep response and proceed to allogeneic stem cell transplantation. This combination also could offer a long-term durability of response, with an estimated four-year overall survival rate of 71% in patients with newly diagnosed acute myeloid leukemia.

These findings highlight the potential of CLIA-venetoclax as a powerful induction therapy that offers deep and sustained remissions in high-risk patients.

To keep reading more articles like this one, you can browse our HealthTree News section, where you’ll find different article categories.

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A Phase II Trial of Venetoclax in Combination with Cladribine, Idarubicin, and Cytarabine in Newly Diagnosed Acute Myeloid Leukemia and High-Risk Myelodysplastic Syndrome
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Chronic myelomonocytic leukemia (CMML) is a blood cancer that occurs when the bone marrow makes too many monocytes, a type of white blood cell. The median age at diagnosis is 72 years, and it's more common in males than females. The most common medications used to treat CMML are: azacitidine (Vidaza), decitabine (Dacogen) and Inqovi (a combination of decitabine and cedazuridine). In CMML, it is common to have low counts of other blood cell types, such as platelets, which cause symptoms like the risk of bleeding, bruising and difficulty in healing wounds.

What Is Thrombocytopenia?

Thrombocytopenia (low platelet levels) and platelet dysfunction contribute to bleeding complications and can be life-threatening in severe cases. The most common symptoms are bleeding or bruising easily, even after minor injuries. Bleeding can occur inside the body, under the skin, or on the surface of the skin.

A New Medication To Improve Platelet Levels

Eltrombopag is a thrombopoietin receptor agonist that stimulates platelet production in the bone marrow. It is FDA approved for treatment of non-chemotherapy related disorders of low platelets like chronic immune thrombocytopenia (ITP).

Eltrombopag treats low platelet counts (thrombocytopenia) in CMML patients, as well as in adults and children with chronic immune thrombocytopenic purpura and severe aplastic anemia.

What Are the Side Effects of Eltrombopag?

Some side effects that may occur with this use of this treatment include:

Swelling of the face, hand, lower legs or feet
Fatigue
Chills
Cough
Fever
Nausea
Loss of appetite
Rash

A New Clinical Trial

A recent phase II trial enrolled 29 patients across 15 centers who had CMML and lower-risk disease. 11 patients had had at least one prior therapy, including steroids or intravenous immunoglobulins (IVIG).

This trial lasted for 12 weeks:

Patients received eltrombopag at a starting dose of 100 mg once daily, which was later changed to 50 mg/day.
The Dose was adjustable up to 300 mg/day.
Patients responding well could continue the treatment for up to 24 months.
This group had an overall survival rate of 47% and a two-year progression-free survival rate of 23%.

Conclusion

For those patients with CMML who are experiencing low platelet level complications, eltrombopag appears to be a new and effective treatment option when other lines of therapy have not been successful.

Become your best self advocate with HealthTree, we provide free resources to help you stay on top of your health!

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Eltrombopag in chronic myelomonocytic leukemia with severe thrombocytopenia. A Groupe Francophone des Myélodysplasies (GFM) study

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The excitement around menin inhibitors, a new class of targeted therapy for leukemia, is building. And for good reason: these new oral medications are showing promising results for patients with specific genetic changes in their leukemia cells.

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\"Menin inhibitors are a very exciting new type of therapy,\" explains Dr. Amer Zeidan, Professor of Medicine and Chief of Hematologic Malignancies at Yale University. \"They are pills that target specific alterations that occur in around 40% of patients with acute leukemia.\"
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A Treatment Twenty Years in the Making

The story of menin inhibitors began almost two decades ago, initially driven by pediatric oncologists seeking better treatments for infants with a particularly challenging type of acute lymphoblastic leukemia (ALL). Through years of careful research, scientists discovered that blocking the interaction between two proteins - menin and KMT2A - could force leukemia cells to mature into normal cells. This fundamental discovery has now led to a new class of treatments that could help both children and adults with certain types of leukemia.

What Are Menin Inhibitors and Who Could Benefit?

Menin inhibitors are targeted therapies - meaning they're designed to attack specific features of leukemia cells while largely sparing healthy cells. Your doctor might consider a menin inhibitor if your leukemia has specific genetic features:

NPM1 mutations: These are more common in younger patients and in those whose leukemia cells look normal under the microscope (what doctors call \"normal karyotype\"). About 30% of AML patients have this mutation.
KMT2A rearrangements: These occur in 5-10% of patients with acute leukemia. Your doctor might particularly suspect this if you've had previous chemotherapy for another cancer, especially breast cancer or lymphoma. These changes often occur in young children with ALL and in a type of AML where the leukemia cells look like monocytes (a type of white blood cell).

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\"Between these two alterations, around 40% of patients will have one of those changes. This targeted therapy follows the path of other targeted therapies we have used in AML, such as IDH inhibitors and FLT3 inhibitors,\" notes Dr. Zeidan.
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The Current Landscape: Multiple Menin Inhibitors in Development

Early clinical trials with different menin inhibitors are showing some consistent patterns:

About 60% of patients show some response to treatment
Around 25% or more achieve a complete remission
For those who respond, the benefits typically last about 6.5 months
Many patients who respond can proceed to stem cell transplant, which might provide longer-term control of their leukemia
The primary difference between menin inhibitors may be largely related to their safety profile

Several menin inhibitors are being studied:

Revumenib:

The first FDA-approved menin inhibitor (We'll have a detailed article about revumenib coming soon!)

Ziftomenib:

Combined with standard chemotherapy (7+3) in newly diagnosed AML patients
Impressive early results:\n
- Overall, 91% of patients responded to this treatment.
- The majority of patients (>80% in all subgroups) showed a complete remission of leukemia cells, including both NPM1-mutated patients and those with KMT2A rearrangements
- 76% of patients achieved MRD negativity (no detectable disease using sensitive testing)
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Based on the encouraging early results, there are now multiple trials underway investigating ziftomenib for both newly diagnosed and relapsed patients with acute leukemia. Additionally, an expanded access program has been established for patients with acute leukemia who have exhausted all other treatment options.

Bleximenib:

The latest results are from a study with 146 patients with relapsed/refractory acute leukemia, mostly AML\n
- Nearly 50% overall response rate, 38% of patients achieved complete remission, and 14% of patients were able to proceed to transplant so far, although the study is still ongoing
\n
When administered in combination with intensive chemotherapy to treat patients with newly diagnosed AML:\n
- Almost all patients quickly showed some level of response, and 86% achieved a complete remission
\n

Bleximenib is also moving forward in clinical development and is currently being studied in multiple clinical trials. The investigators shared that they are very excited to see these response rates, but that they are still on the learning curve with these agents and hypervigilant to make sure they are administered safely to patients who can benefit the most.

Enzomenib:

Enzomenib was designed to improve its specificity to hit its target, potentially reducing the side effects
It has shown activity both when administered alone and when combined with other medications
Response rates:\n
- 65.2% in KMT2A-rearranged leukemia
- 58.8% in NPM1-mutated leukemia
\n
Some patients (34% with KMT2A and 12% with NPM1) were able to proceed to allogeneic transplant
Notably, researchers did not have to alter the dose of enzomenib when prescribing an antifungal medication (also called an azole), which are frequently used to prevent infections in patients with leukemia.

Enzomenib is being studied in an international phase 1/2 study, which is still recruiting participants as of April 2025

What to Know About Menin Inhibitors Side Effects

While each menin inhibitor has its own safety profile, your healthcare team will help you monitor for and manage potential side effects. Here's what you need to know:

Differentiation Syndrome (DS):

Occurs in 10-15% of patients, and it is due to the rapid death of a large number of leukemia cells
Signs include: fever, breathing difficulties, fluid retention or swelling, rashes, low blood pressure, or even kidney failure

When treated early, it is manageable with temporary treatment interruption and steroids, so it is key that patients report any symptoms as soon as possible so the care team can treat them early.

Blood Count Changes:

Changes are common, especially when menin inhibitors are given in combination with chemotherapy
Patients take regular blood tests to monitor the cell counts
Significant changes in cell counts may lead to adjustments in the medication doses.

General Side Effects:

Nausea and vomiting (particularly with some agents)
Generally manageable with supportive care
Patients need to take their temperature twice daily

Managing Expectations

While the early results with menin inhibitors are encouraging, leading experts emphasize the importance of careful research. Experts are eagerly waiting for results from larger and randomized trials, which compare new treatments directly with current standards. These are essential to understand truly:

How long do responses last
Whether patients live longer with this treatment
Long-term side effects
Who benefits most from these treatments

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As Dr. Laura Michaelis from the Medical College of Wisconsin notes, \"All the data we have so far comes from non-comparative studies [there is no control arm]. We need to wait for randomized trials to really know the impact of these new treatments.\"
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Find Open Clinical Trials with Menin Inhibitors

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\"When you have a good drug that is active, you try to combine it in earlier lines of treatment with other standard of care treatments,\" explains Dr. Zeidan.
\n

This is exactly what's happening with menin inhibitors:

Studies combining them with standard chemotherapy
Trials with venetoclax and azacitidine combinations
Thoroughly being studied for newly diagnosed patients, relapsed/refractory, and also as maintenance after transplant

With HealthTree's Clinical Trial Finder, you can review all the clinical trials with menin inhibitors that are currently looking for patients with leukemia. If you connect your medical records, our Patient Navigators will also be able to assist you in understanding your eligibility to participate in these studies. Create a free Cure Hub account below and start exploring all your options:

Find Open Studies with Menin Inhibitors

Watch our full interview below with Dr. Zeidan, who discusses the latest menin inhibitor research.

What This Means for Patients

If you have AML or ALL, your doctor might test your leukemia cells for NPM1 mutations or KMT2A rearrangements. This testing helps determine if a menin inhibitor might be right for you now or in the future.

Remember: This is an exciting time in leukemia treatment, with new options becoming available for specific genetic changes. Talk to your healthcare team about whether genetic testing and menin inhibitors might be right for your situation.

!AD!

Continue learning about menin inhibitors from the experts. Click here to listen to Dr. Joshua Zeidner's experience with these revolutionary new treatments.

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","language":"EN","metaDescription":"Learn about menin inhibitors, a new class of targeted treatments for leukemia patients with specific genetic changes.","metaTitle":"Menin Inhibitors for AML and ALL","publishedAt":{"_type":"Date","value":"Tue Apr 29 2025 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"menin inhibitors leukemia, NPM1 mutation treatment, KMT2A rearrangement therapy, targeted leukemia therapy, leukemia targeted treatment, ziftomenib leukemia, bleximenib clinical trial, enzomenib leukemia, new leukemia treatments 2024, AML targeted therapy, leukemia oral treatment, leukemia clinical trials, NPM1 leukemia treatment, KMT2A leukemia therapy, ASH 2024, leukemia updates, leukemia mutation testing, menin inhibitor side effects, leukemia research advances, leukemia treatment options","slug":"menin-inhibitors-new-leukemia-treatment-option","status":"ACTIVE","title":"Menin Inhibitors: A New Treatment Option for Acute Leukemia Patients","updatedAt":{"_type":"Date","value":"Wed May 07 2025 16:35:52 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:53 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"new-in-myeloma","sectionConfig":{"news":{"description":"Our Treatment Advances articles cover treatment option updates, new combinations of treatments, FDA approval news, and more.","metaDescription":"It's important for patients to stay up-to-speed on advancements in their cancer because the treatment options are rapidly changing.","metaTitle":"Treatment Advances - HealthTree Foundation","order":1,"tileOrder":1,"type":"LARGE_TILE"}},"sections":["NEWS"],"slug":"treatment-advances","status":"ACTIVE","title":"Treatment Advances","updatedAt":{"_type":"Date","value":"Fri Apr 12 2024 20:21:03 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"},"snapshot":{"exists":true,"id":"haqKTOi9lG4MNU3rNLG6","ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/VsqUhas0SAvEiOReodWy"},"snapshot":{"exists":true,"id":"VsqUhas0SAvEiOReodWy","ref":{"_type":"DocumentReference","path":"apps/community/articles/VsqUhas0SAvEiOReodWy"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/jBpDWkHVhDQGjBwBMUzk"},"category":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"},"createdAt":{"_type":"Date","value":"Wed Apr 23 2025 22:38:21 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},"diseases":[{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"}],"headerImageUrl":"https://healthtree.org/images-resize?imageUrl=https%253A%252F%252Ffirebasestorage.googleapis.com%252Fv0%252Fb%252Fhealthtree-production.appspot.com%252Fo%252Fgallery%25252Fpublic%25252Fintravenous%252520drip%252520medication_e10ae69b-f737-4eb4-9c76-e92481f6e5a0.jpg%253Falt%253Dmedia","htmlContent":"

Vibecotamab is a type of antibody designed to target a specific protein called CD123, which is found in high levels on cancerous blood cells, especially those that affect the bone marrow’s ability to produce healthy blood cells (myeloid disorders). Because normal blood-forming cells have much lower levels of CD123, targeting this protein may help eliminate cancerous cells while sparing healthy ones.

A recent clinical study evaluated vibecotamab in patients with myeloid disorders who had limited treatment options. The study included patients with:

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Myelodysplastic syndrome (MDS) or chronic myelomonocytic leukemia (CMML) who have not responded to previous hypomethylating agents (azacitidine, decitabine).
\n
\n
Acute myeloid leukemia (AML) and in remission but with minimal residual disease (MRD) positive, meaning small amounts of leukemia cells remained in the body despite initial treatment.
\n

Key Study Findings

Myelodysplastic Syndrome and Chronic Myelomonocytic Leukemia

68% of patients showed improvement
63% achieved complete remission, meaning cancerous cells were no longer detectable in the bone marrow
It is particularly telling that all 3 patients with CMML achieved a complete remission
The median duration of response was 5.2 months
Patients in the study lived for about 10 months on average after starting the treatment

Acute Myeloid Leukemia

28% of patients achieved MRD negativity, meaning there were no detectable leukemia cells in the bone marrow.
All responses happened within the first treatment cycle.
Some patients maintained their remission for over two years, while others relapsed after stopping treatment.
There was no connection between how likely someone was to respond and the amount of CD123 expressed in cancer cells.

What’s the Safety Profile of Vibecotamab?

Vibecotamab was considered by the researchers to be generally well tolerated
The most common side effect was infusion-related reactions, which were mostly mild to moderate
No patients had to stop treatment due to severe side effects
Unlike some other treatments, vibecotamab caused minimal suppression of healthy blood cell production

What This Means for Patients

The study suggests that vibecotamab may be beneficial for patients with limited treatment options, especially those with high-risk or relapsed disease. The findings suggest continuing vibecotamab beyond the initial treatment period may help maintain remission.

If you or a loved one is exploring new treatment options, it may be helpful to discuss new agents being tested in clinical trials. They can assess whether a new treatment like vibecotamab may be appropriate based on your specific condition, previous treatments, and overall health.

If you want to read more about treatment advances and clinical trial updates, bookmark the HealthTree News page to browse our articles, written just for you!

Keep Reading More Articles

","language":"EN","metaDescription":"Learn how vibecotamab targets CD123 to treat myelodysplastic syndrome, chronic myelomonocytic leukemia, and acute myeloid leukemia.","metaTitle":" Vibecotamab for Myeloid Blood Cancers","publishedAt":{"_type":"Date","value":"Fri Apr 25 2025 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"vibecotamab, CD123 antibody, myeloid blood cancer, myelodysplastic syndrome, MDS treatment, chronic myelomonocytic leukemia, CMML therapy, acute myeloid leukemia, AML treatment, minimal residual disease, leukemia research, targeted therapy, new cancer treatment, immunotherapy for leukemia, hematologic malignancies","slug":"ash-24-vibecotamab-for-cmml-aml-mds","status":"ACTIVE","title":"Vibecotamab: A Potential Treatment Option for Myeloid Blood Cancers","updatedAt":{"_type":"Date","value":"Wed Apr 23 2025 22:45:58 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:53 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"new-in-myeloma","sectionConfig":{"news":{"description":"Our Treatment Advances articles cover treatment option updates, new combinations of treatments, FDA approval news, and more.","metaDescription":"It's important for patients to stay up-to-speed on advancements in their cancer because the treatment options are rapidly changing.","metaTitle":"Treatment Advances - HealthTree Foundation","order":1,"tileOrder":1,"type":"LARGE_TILE"}},"sections":["NEWS"],"slug":"treatment-advances","status":"ACTIVE","title":"Treatment Advances","updatedAt":{"_type":"Date","value":"Fri Apr 12 2024 20:21:03 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"},"snapshot":{"exists":true,"id":"haqKTOi9lG4MNU3rNLG6","ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/oTNkg66Dlkb4NWw3BxWv"},"snapshot":{"exists":true,"id":"oTNkg66Dlkb4NWw3BxWv","ref":{"_type":"DocumentReference","path":"apps/community/articles/oTNkg66Dlkb4NWw3BxWv"}}}],"hn1DyzeAyX6tgl3gxSDx":[{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/Yj5pk904HRNwZA8Wqfcu"},"category":{"_type":"DocumentReference","path":"apps/community/categories/hn1DyzeAyX6tgl3gxSDx"},"createdAt":{"_type":"Date","value":"Fri Apr 18 2025 19:56:09 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},"diseases":[{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"}],"headerImageUrl":"https://healthtree.org/images-resize?imageUrl=https%253A%252F%252Ffirebasestorage.googleapis.com%252Fv0%252Fb%252Fhealthtree-production.appspot.com%252Fo%252Fgallery%25252Fpublic%25252Fpatient%252520talking%252520with%252520doctor_0369437d-b84e-445c-8f09-7feab22d5f77.png%253Falt%253Dmedia","htmlContent":"

When you've had a bone marrow transplant for AML or MDS, your healthcare team tracks many things - blood counts, medications, side effects... But new research shows that something equally important might be a simple question: \"How would you say your health is overall?\"

A Simple Question With Important Implications

New research presented at the 2024 American Society of Hematology (ASH) meeting reveals that how transplant survivors describe their own health could provide valuable insights for their care team. Dr. Nora Balas from the University of Alabama at Birmingham led this important study looking at patients' health experiences after transplant.

\n
\"We're seeing more patients receiving bone marrow transplants for AML and MDS,\" explains Dr. Balas. \"While this is excellent news, we know that the journey doesn't end with transplant. Understanding how patients experience their health helps us provide better support when they need it.\"
\n

What the Research Found

The study, which included patients from three major medical centers, asked transplant survivors a straightforward question: \"In general, would you say your health is excellent, very good, good, fair, or poor?\"

The findings showed that:

25% of survivors reported their health as \"fair\" or \"poor\"
These patients often needed additional support
Several factors influenced how people rated their health

Understanding What Affects Your Health Experience

The researchers identified several key areas that influenced how patients felt about their health:

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Physical Activity: \"We found that exercise plays an important role,\" notes Dr. Balas. \"This doesn't mean you need to run marathons - even gentle movement within your ability can make a difference.\"
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Pain Management: How well pain is controlled significantly affects daily life. Your care team wants to know about any pain you're experiencing so they can help manage it effectively.
\n
\n
Mental Health: \"Psychological support is just as important as physical care,\" Dr. Balas emphasizes. \"There's no shame in asking for help when you're feeling overwhelmed.\"
\n
\n
Social and Economic Support: Access to resources and support systems plays a crucial role in recovery.
\n

Why Speaking Up Matters

The research showed that being open about your health experience isn't just about recording information - it helps your care team provide better support. When patients shared that they were experiencing challenges, healthcare providers could step in with additional resources and support.

What This Means for You

If you're recovering from a transplant:

Be honest with your care team about how you're feeling
Don't hesitate to mention challenges, whether physical or emotional
Ask about resources for exercise, pain management, or mental health support
Remember that there's no \"right\" way to feel - everyone's journey is different

Remember, sharing how you feel isn't about judgment - it's about helping your care team provide the best possible support for your unique experience. Watch our full interview with Dr. Balas to learn more about this important research.

Make Your Experience Count

Your journey can help advance blood cancer research and support others. Join HealthTree Cure Hub, our free patient research platform to:

Securely share your experiences and medical records
Contribute to important research that helps improve care for everyone

Join a community dedicated to improving outcomes for everyone affected by AML and MDS.

Create a Cure Hub Account

Source:

Self-Rated Health Is an Independent Predictor of Subsequent Late Mortality after Blood or Marrow Transplantation (BMT) Among Survivors of Myeloid Malignancies: A BMTSS Report

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Background

Myeloma patients, especially the newly diagnosed, are made aware at the start of their treatment journey that the risk of their treatment regimen may end up causing secondary hematological malignancies (often also called second primary cancers). For example, patients starting with a standard of care regimen that contains lenalidomide (Revlimid) should be aware that higher incidences of Second Primary Malignancies (SPM) were observed in controlled trials of patients with multiple myeloma receiving Revlimid, as disclosed in the Prescribing Information For The Product [See “Warnings and Precautions”].

FDA regulations

FDA has a body of regulations for labeling of Prescription Medications that follow a well-declared template of all that needs to be declared on the Insert of each medication. Each dispensing bottle of medication comes with an “insert”, a printed copy of all FDA wants the prescriber to know. As a patient you typically won’t see this “insert” as it is typically removed by the dispensing pharmacist, but it can be rapidly found through an internet query “Prescribing information for [insert a drug name]\", and bingo, you have what the pharmacist has removed.

The prescribing information always has a series of warnings for the drugs in question that the prescriber should be aware of : such as Contraindications [situations when the risk from use clearly outweighs any possible therapeutic benefit, and the medicine must not be used], Warnings and Precautions [situations when the risk from use clearly outweighs any possible therapeutic benefit, and the medicine must not be used].

There is also another and more important caution that FDA requires in some medicines called a “Boxed Warning” [page 11 of that document] (or sometimes called a “Black Box warning”). This is a statement at the front of the prescribing information printed in bold and placed inside a black box that jumps from the page. This warning is used when:

There is an adverse reaction so serious in potential benefit for the medication.
There is a serious adverse reaction that can be prevented or reduced in frequency or severity by the appropriate use of the medication.
The medications are approved with restrictions on safe use (REMS product).

CAR-T Products

In 2024 FDA decided to add a “Black Box Warning” to all the CAR-T products approved in the US. In a communication from the Agency they explained their rationale:

“FDA concluded, based on the evaluation of data from post-marketing adverse event and clinical trial reports, that mature T cell malignancies, including CAR-T positive tumors, may present as soon as weeks following infusion, and may include fatal outcomes. FDA has determined that the serious risk of T cell malignancies is applicable to all currently approved BCMA-directed and CD-19-directed modified autologous CAR T cell immunotherapies.”

The reaction by the medical community and the industry was swift. “The industry complained that the FDA treated CAR-T unfairly while there are drugs with larger or similar numbers of secondary cancer reports that are being marketed without this boxed warning item. [For example, Revlimid does not have a Black Bow warning.] Besides, people with blood cancers already have various risk factors related to the secondary development of cancer in the first place.”

What should patients know?

Over the past week, two scientific papers provided guidance:

The Journal Bone Marrow Transplantation provides the analysis of 555 patients that were treated over the past few years for Diffuse Large Cell Lymphoma, Mantle Cell Lymphoma Primary Mediastinal B-cell Lymphoma, Follicular Lymphoma, Chronic Lymphocytic Lymphoma. [No myeloma patients were included because of the more recent regulatory approval for Carvykti/Abecma in Europe compared to the US.]
The Journal Nature Medicine presents the follow-up of 783 patients that were treated in Cell Therapy Trials. Myeloma patients were part in this analysis.

There are two key questions for patients :

Is there an incidence of secondary myeloid Neoplasms (NSM) following Car-T therapy? Yes, there is. The report from The Journal Bone Marrow Transplantation shows an incidence rate of 2.5%, with 7.9 months as a median time of onset, and with myelodysplastic syndrome (MDS) occurring in over 90% of cases. The Nature Medicine article reports that 2.3% developed secondary malignancies after treatment, with a median onset of 1.94 years.
Is CAR-T treatment the cause of NSM’s ? NO, there isn’t !! The Journal Bone Marrow Transplantation team explains, ”Among the variables analyzed, elevated CAR-HEMATOTOX scores and thrombocytopenia at 3 months were the only ones significantly associated with SMN development.” [The CAR-HEMATOTOX represents an easy-to-use risk-stratification tool that is helpful in ruling out patients at risk of hematotoxicity.] The Nature Medicine article comments, “The researchers indicated that the rare occurrences of secondary cancers that did occur following CAR T-cell therapy could be attributed to a suppressed immune system from first-line cancer treatments such as radiation and chemotherapy. However, none of the cases among the patients involved in the study were caused by CAR T-cell therapy.”

Conclusion

While secondary cancers can occur after myeloma treatments, current research shows that CAR-T therapy itself is not the direct cause. To improve outcomes, patients should stay informed about medication warnings and talk with their care team about any concerns, especially when considering CAR-T as part of their treatment plan.

Keep reading more news and treatment updates with the HealthTree News Site!

Keep Reading More Articles

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Cancer can be physically and emotionally demanding. For some people, this can also put them at risk of substance use. May is the Mental Health Awareness month and in this article we break down how substance use can affect cancer outcomes and explore how stigma can get in the way of care. You’ll also learn how treatment approaches can better support patients managing both cancer and substance use.

Substance Use Is Often Overlooked in Cancer Care

As cancer treatments improve, more patients are living longer. However, mental health and substance use care often remain under-prioritized in oncology. There is a link between substance use and cancer that cannot be overlooked as it goes both directions. Meaning that substance use can increase the risk of certain cancers, and a cancer diagnosis can also trigger or worsen substance use as patients manage pain or emotional distress.

In one study from JAMA Oncology involving over 6,000 adult cancer survivors, 3.83% had an active substance use disorder (SUD), with alcohol use disorder being the most common at 2.78%. This matters because patients with a SUD may receive less effective pain management and face more challenges following their cancer treatment plans. These difficulties can reduce quality of life and lower the chance of recovery.

Why Cancer and Substance Use Often Overlap

A cancer diagnosis often brings physical pain, stress, anxiety, and depression. To cope, some patients turn to alcohol, smoking, or other substances. Pain is commonly treated with opioids, which can be effective but also carry a risk of developing opioid use disorder (OUD).

To read more about opioid use and pain in cancer, visit this article of HealthTree Research findings by clicking the button below.

Managing Pain and Opioid Use for Myeloma Patients

Tobacco and alcohol are the most widely used substances that raise cancer risk.

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Tobacco causes about 30% of all cancer deaths, including 80% of lung cancer deaths. It is also linked to cancers of the mouth, throat, larynx, esophagus, stomach, colon, rectum, pancreas, liver, kidney, bladder, cervix, and even blood cancers. Tobacco not only increases the risk of cancer, but can also produce metabolic and circulation issues in the body that make receiving cancer treatment more challenging.
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Alcohol is responsible for about 3.5% of cancer deaths. The risk is proportional to the intake; higher amounts over long periods pose a higher risk. For women, heavy use means more than 4 drinks per day or 8 per week. For men, it’s more than 5 drinks per day or 15 per week. Alcohol is processed by the liver and can interfere with the metabolism of other cancer treatments, increase the risk of worse side effects, and, in some cases, inactivate the medication.
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These facts are important because quitting tobacco and reducing alcohol use, even after a cancer diagnosis, can still lower future cancer risks and improve health.

Other Substances That Can Complicate Cancer Treatment and Health

Aside from tobacco and alcohol, the following substances are also frequently seen among patients and can interfere with treatment:

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Cannabis or marijuana is a natural opioid that can be synthesized into CBD. It can be prescribed by a doctor and administered under controlled conditions. Medical-grade marijuana has strict sanitary regulations and can be beneficial for many people. There is a risk of fungal infection of the lungs associated with marijuana produced in unofficial or unsanitary settings. You can read more about safe uses of cannabis and its risks from the American Thoracic Society here.
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Anabolic steroids are the most commonly used drugs among athletes to improve physical performance and aesthetic appearance. These drugs interact with hormone cycles and can also have a negative impact on other organs such as the liver, the cardiovascular, central nervous, musculoskeletal, endocrine, and reproductive systems. It is important to note that anabolic steroids are different from the commonly used steroids in cancer treatments.
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Injection drugs, including heroin. These drugs are administered directly into the veins, and their use has risks besides addiction. They can cause vascular strokes, blood and tissue infections, and blood-transmitted diseases like hepatitis and HIV.
Prolonged use can affect the main veins, limiting the option for intravenous cancer medications or increasing the need for longer hospital stays to monitor its applications.
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Synthetic drugs, such as methamphetamine (“meth” or “crystal”) is associated with liver cancer and affects psychiatric and physical performance. It is a toxic chemical substance for multiple organs, including the heart, brain and other liver.
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Cocaine is a powder absorbed by the mucous membranes. While cocaine’s impact on cellular processes is not fully understood, researchers speculated that the drug might stimulate white blood cell activity and growth. This could potentially speed up the formation of genetic errors that could lead to cancer. Read more about the link of cocaine and cancer here.
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Each of these substances has harmful effects on the body in more than one way. For example, meth, heroine and cocaine are often mixed with other toxic chemicals and powders such as benzene, a known carcinogen. All of these substances, once they’ve entered the body, are processed for elimination, interfering with the proper functioning of organs and metabolism. When receiving cancer treatment, they can also interfere with the absorption and beneficial effects of the therapy.

Challenges in Coordinating Cancer and SUD Treatment

Treating cancer and SUD at the same time is complex. Some medications used to treat SUD, like buprenorphine or methadone, can interfere with cancer pain treatments or may be stopped when patients begin cancer care. Conversely, untreated SUD can make it harder to manage symptoms or keep up with appointments.

Patients taking naltrexone for alcohol use disorder may not be able to use certain cancer pain treatments that act on the same parts of the brain.

How Does Stigma Affect People With Substance Use Disorders?

Patients with past or current substance use may fear judgment or treatment changes if they disclose their use. This stigma can prevent honest conversations with their medical team. Feeling stigmatized can reduce the willingness of individuals with SUD to seek treatment.

Stigma remains a major barrier. Some healthcare providers are not trained to manage SUDs in cancer patients, leading to missed opportunities for care. Stigmatizing language and views can negatively influence health care provider perceptions of people with SUD, which can impact the care they provide.

Reducing Stigma and Improving Support

One approach that has shown great results is harm reduction. This means supporting patients in reducing risky behaviors without judgment. For example, rather than requiring someone to fully quit a substance, providers can offer ways to reduce harm while continuing cancer treatment. These can include safer use tips, mental health support, or starting SUD treatment when the patient is ready.

When harm reduction strategies are used with all patients, stigma can be reduced, and more people feel safe sharing their needs.

The way we name things impacts stigma around substance use disorders

There is a story behind every person, some wording perceived as popular, common or “harmless” can stigmatize people living with substance use disorders and prevent them for receiving the care they need. Reducing the stigma can start with simple things such as how we name things.

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n

\n Preferred terms that do not stigmatize \n	\n Common terms that might stigmatize \n	\n Why change the language we use? \n
\n Person or patient *with* a: \n \n \n Substance use disorder \n \n \n Opioid use disorder \n \n \n Alcohol use disorder \n \n \n	\n Someone who is a/an: \n \n \n Junkie \n \n \n Addict \n \n \n Alcoholic \n \n \n	\n \n \n Person-first language \n \n \n Demonstrates a person “has” a problem, rather than “is” the problem \n \n \n Avoids negative associations or personal blame \n \n \n
\n \n \n Use (illicit substance) \n \n \n Misuse (prescription medications) \n \n \n	\n \n \n Substance abuse \n \n \n	\n \n \n “Abuse” is associated with negative judgments and punishment \n \n \n
\n \n \n Substance-free \n \n \n Expected/unexpected findings \n \n \n	\n \n \n Clean or dirty \n \n \n Positive/negative \n \n \n	\n \n \n Preferred terms are clinically accurate, non-stigmatizing \n \n \n
\n \n \n Recovery \n \n \n Remission \n \n \n Substance-free \n \n \n	\n \n \n Clean \n \n \n Sober \n \n \n	\n \n \n Preferred terms are clinically accurate and non-stigmatizing, similar to other medical conditions \n \n \n
\n \n \n Addiction \n \n \n	\n \n \n Habit \n \n \n Behavior \n \n \n	\n \n \n Substance use disorders are medical conditions \n \n \n “Habit” or “behavior” is inaccurate and implies control \n \n \n

Chart from Addiction in Patients With Cancer: Challenges and Opportunities

Sourced from National Institute on Drug Abuse (2020)

Moving Toward More Inclusive, Effective Cancer Care

Patients with cancer who also use substances deserve care that addresses all aspects of their health. Integrating addiction services into cancer centers and training oncology providers in harm reduction and substance use management are important next steps.

Better education, open communication, and a compassionate approach can improve outcomes and make sure no patient feels left behind. Substance use is not a failure; it’s a health issue that deserves understanding and treatment, especially during cancer care.

Stay tuned for more articles at the HealthTree News Site, where we publish a wide variety of topics, from conference updates to treatment innovations. Click the button below to keep reading more articles.

For more information and help for people with substance use disorders, you can visit the following assistance resources:

SAMHSA - Substance Abuse and Mental Health Services https://www.samhsa.gov/

Medication Assistance Therapy Care Clinic https://www.matcareclinics.com/

American Addiction Centers https://drugabuse.com/addiction/health-issues/cancer/

CDC Mental Health Resources https://www.cdc.gov/mental-health/caring/index.html#:~:text=Key%20points,to%20the%20nearest%20crisis%20center.

American Society of Addiction Medicine https://www.asam.org/

Start Your Recovery Organization https://startyourrecovery.org/experiences/co-occurring-disorders

Sources:

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As part of Mental Health Awareness Month, we’ll cover the causes, symptoms, and ways to manage brain-related side effects (difficulty thinking, headaches, etc.) that can happen from blood cancer treatment.

How Blood Cancer Treatments and Other Risk Factors May Impact Brain Function

Several factors can contribute to changes in brain function as a result of blood cancer treatment.

The treatments themselves, like chemotherapy, targeted therapy, radiation, and immunotherapy, can affect brain health by:

Crossing the barrier that protects your brain and directly impacting brain cells.
Triggering inflammation through immune system activation, which clouds brain function.
Remaining oxidative stress after treatment—caused by too many free radicals and not enough antioxidants—can damage healthy cells and trigger inflammation, affecting areas like the brain.

Factors That Increase Your Risk

Having certain health conditions before starting blood cancer treatment can raise the risk of brain-related side effects afterward. These include past cognitive issues (memory loss or trouble concentrating), anemia, mood disorders, chronic stress, hormone imbalances, high blood pressure, poor sleep, nutrient deficiencies, diabetes, systemic inflammation, or recurring infections, among others.

Even without treatment, cancer cells can increase inflammation in the body, which may dampen brain function.

What Do Symptoms Look Like?

The brain-related symptoms you may experience from certain blood cancer treatments may include:

Mild to moderate symptoms: trouble thinking clearly, confusion, fatigue, headaches
More serious issues (rare): difficulty speaking, tremors, seizures

These symptoms are sometimes called chemo brain, brain fog, cognitive impairment, neurological issues, or ICANS (immune effector cell-associated neurotoxicity syndrome). They can be short-term or last longer, but in either case, it is important to communicate with your care team if you are experiencing any of these symptoms for the first time or if they are worsening.

Tips for Recovery

If your brain-related symptoms aren’t improving over time, it’s important to get help. Here are some supportive strategies:

Consult with your blood cancer specialist: Talk to your doctor about ways to manage treatment side effects. For example, if you're experiencing headaches from a cancer therapy, ask what can help. They might recommend adding a headache-relief medication, adjusting the dose, or switching to a different treatment.
Nutrition support: Work with a registered dietitian to reduce inflammation and address nutrient gaps that directly impact brain health.
Visit a functional neurologist: See a functional neurologist who can pinpoint which areas of your brain need support and create a personalized therapy plan using targeted eye, hand, or balance exercises to help strengthen them. They may also suggest adding certain medications. This differs from a neurologist, who focuses mostly on medication to treat symptoms.
Mental health support: A licensed therapist can help you manage stress, anxiety, or trauma, and teach coping skills—like mindfulness and breathing techniques—that may reduce inflammation and improve your quality of life.
Lifestyle habits: Getting enough sleep, staying hydrated, exercising moderately, and eating nutrient-dense foods can support brain health.

Coping support: As you work to regain full cognitive function, tips like using a planner, taking frequent breaks, and doing brain-stimulating activities like puzzles or reading can help you support yourself during recovery.

Key Takeaways

Brain-related side effects from blood cancer treatments can occur and range from mild brain fog to more serious neurological issues.

While these changes can be influenced by the treatments themselves and pre-existing health conditions, there are several supportive strategies—from nutrition and functional neurological therapy to mental health care and lifestyle habits—that may help manage symptoms and promote recovery.

Even if side effects are expected, working closely with your care team is key to finding the right solutions for your cognitive health and overall well-being.

Discover Patient-Reported Side Effect Solutions

Want to share side effects you've experienced during treatment and what helped you manage them? Or curious about what’s worked for other patients? Use HealthTree’s patient-reported side effect solutions tool to learn and contribute below!

Access Side Effect Solutions

!AD!

Sources:

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On April 30, 2025, the United States Senate Appropriations Committee gathered for a hearing to discuss the future of federal funding for biomedical research in the United States. This session engaged a variety of voices from committee members, physicians, patients, caregivers, and advocates.

The Committee's main responsibility is to distribute federal funds that ensure that agencies like the FDA and the NIH have the necessary resources to drive scientific discoveries.

During the hearing, several experts and advocates testified, sharing their views on the benefits of federal funding and the urgent need for continued investment in life-saving research.

Federal Funds Advance Discovery, Save Lives, and Offer Hope

For many years, the U.S. has prioritized biomedical research, trained the next generation of scientists, and accelerated the pace of disease-curing discoveries. In the last 30 years, cancer death rates have dropped by 34%. These improvements are a direct result of federally funded programs devoted to cancer prevention, early detection, and advancing treatment options.

Maintaining strong federal support allows researchers to keep making progress, develop new treatments faster, and expand access to clinical trials for patients across the country.

There was strong support from both political parties in attendance for maintaining—and not cutting—federal funding for biomedical research. Legislators on both sides agree that continued federal support is essential for helping agencies like the NIH and FDA build on past achievements and address pressing health challenges.

Committee Chair Susan Collins (R-ME) pointed out that the FDA has approved over 600 cancer treatments because of years of government-supported research. Agencies will need continued funding to build on this progress.

Senator Tammy Baldwin (D-WI) spoke about the long-term impact of cutting biomedical research funding, highlighting that cuts will likely lead to fewer medical student acceptances and research positions, slowing progress in finding new treatments.

Emily Stenson, a pediatric cancer advocate, shared her daughter Charlie’s experience with cancer and emphasized that federal funding for clinical trial research has given her family the hope that she believes every family facing a cancer diagnosis deserves. “Hope gets you through the hardest days. Sometimes hope is all you have. We need to be able to provide that to all families”.

Investing in Innovation and Public Health

Continued investment in health agencies promises not only medical advancements but also helps grow the economy and improve public health outcomes. The Committee’s discussion shows a strong commitment to advancing biomedical research and ensuring that the United States remains a leader in scientific innovation.

How You Can Help Advance Research Through Your Experience

In addition to federal funding, progress in cancer research also depends heavily on understanding the real-world experiences of people living with blood cancer. Your voice can directly shape the future of blood cancer treatment.

By using tools like HealthTree Cure Hub®, you can complete short yet impactful surveys about your diagnosis, treatments, and side effects. This information helps speed up research and leads to more personalized and effective care.

Click the buttons below to access these simple surveys and to learn the results of past patient-accelerated research.

Make an Impact with Brief Blood Cancer Surveys

News Updates on Real-World Research

Sources:

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May is Mental Health Awareness Month

This month, HealthTree is sharing insights, tools, and resources to help patients and caregivers better understand how blood cancer impacts mental health and what can be done to improve it at every stage of diagnosis, treatment, and survivorship.

The prevalence of depression and anxiety among individuals diagnosed with cancer is increasing

Studies show that 35–40% of people with cancer have a diagnosable mental health condition. Despite this, patients remain underdiagnosed and undertreated due to a variety of barriers such as:

Stigma around mental health,
Lack of routine mental health screening in oncology settings, and
Limited access to specialized psychological support.

There are a range of factors that impact mental health during cancer treatment, such as the type of cancer, the therapy used, cancer stage, personal support systems, and access to mental health resources. A person’s emotional well-being can shift depending on where they are in their care process and how their body responds to treatment.

People with cancer are more likely to experience depression and anxiety than the general population

Two of the most common mental health conditions in people with cancer are:

Depression-characterized by loss of interest and a lasting feeling of sadness. A person with depression may have fatigue, trouble concentrating, difficulty sleeping, or irritability.
Generalized Anxiety Disorder-characterized by intense feelings of restlessness, tension, uneasiness, or a constant sense of dread. These symptoms are different from the occasional worry or fear.

While the severity of symptoms can vary from person to person, there are common signs that could indicate that a person is experiencing one of these mental health conditions. Left untreated, depression and anxiety can severely disrupt a person's day-to-day activities and reduce overall well-being. However, with the right support, these challenges can be managed over time.

Many factors contribute to the poor identification and treatment of mental health conditions

Stigma around mental health conditions can have a significant influence on whether a person receives the care they need. Fear of judgment may prevent people from openly sharing about their mental health symptoms with family, friends, and providers.

Additionally, in cancer care, a lack of routine screening and standardized testing to properly identify mental health conditions can make receiving the right mental health care difficult for people at different times while living with cancer.

Even when a mental health condition has been identified, people living with cancer face barriers such as long wait times, high treatment costs, limited insurance coverage, or a lack of available providers and resources. These challenges make it even more important for blood cancer care teams to prioritize emotional well-being as part of a treatment plan.

Addressing mental health challenges improves outcomes

Recognizing these symptoms early can help individuals get the help they need sooner and have a positive impact on treatment outcomes. Patients who receive emotional support often experience better treatment adherence, improved quality of life, and reduced symptoms of depression and anxiety, which leads to better overall outcomes.

Mental health treatment is just as important as treating the physical aspects of blood cancer

This month, and every month, HealthTree is committed to providing education, resources, and support to empower patients to seek care for both their bodies and minds.

Many techniques can improve how a person feels and functions throughout cancer treatment.

Explore practical tools and resources you can use to improve mental health:

You can read more about protecting your mental health by clicking the button below:

Protecting Your Mental Health

In addition to seeking care from a mental health professional, you can also find support through HealthTree’s Coach program, where you will be connected with an experienced patient or caregiver who can help you navigate your blood cancer diagnosis.

Connect With A Coach

Help is always available

If you or someone you know is having thoughts of self-harm or suicide, help is available. For immediate assistance, call the 988 suicide & Crisis Lifeline toll-free at 988 or 1-800-273-TALK (8255). You can also text the Crisis Text Line (Hello to 741741) or message the Lifeline Chat on the 988 Suicide & Crisis Lifeline Website.

Source:

Mental health needs in cancer – a call for change

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Venetoclax (Venclexta, AbbVie) and obinutuzumab (Gazyva, Genentech) are used as a fixed-duration first treatment for people with chronic lymphocytic leukemia (CLL), typically for 12 months. But what if some patients could safely stop treatment sooner?

A study presented by Dr. Meghan Thompson at the 2024 ASH conference suggests that treatment time can be adjusted based on minimal residual disease (MRD) test results. This could help personalize care, ensuring patients receive no more or less treatment than they need.

Continue reading to learn how MRD testing may influence your CLL treatment path.

What Is MRD Testing and Why Is It Important?

Minimal residual disease (MRD) testing checks for small numbers of remaining cancer cells after treatment. If the test doesn’t detect CLL cells, it's called undetectable MRD (uMRD). If cells are still found, it's called detectable MRD (dMRD).

The clonoSEQ test, used in this study, measured two levels of sensitivity:

uMRD5 (10⁻⁵): Fewer than 1 CLL cell in 100,000 white blood cells
uMRD6 (10⁻⁶): Fewer than 1 CLL cell in 1 million white blood cells

MRD can be tested using either blood or bone marrow samples, and results may differ slightly because the location of CLL cells can vary.

How the Study Used MRD to Adjust Treatment Time

In this trial, 100 people with CLL received venetoclax and obinutuzumab for up to 24 months. How long they stayed on treatment depended on their MRD test results:

If patients had uMRD6 in blood by month 7, they were tested again at month 9. If they still had uMRD6, they stopped treatment early.
If MRD was still detectable at month 7, they stayed on treatment and were retested at month 12.
If uMRD5 was reached at month 12, treatment stopped.
Patients who never reached undetectable MRD continued through the full 24 months.

At the end of treatment, everyone received a bone marrow MRD test to compare to their blood results.

What Were the Results?

50 patients stopped treatment by month 9 (uMRD6)
30 patients stopped by month 12 (uMRD5)
3 patients stopped at 24 months, with 1 reaching uMRD5
The rest either left the trial, chose to continue, or didn’t meet the criteria to stop

By the 24-month mark, 92% of patients had not experienced cancer progression. There was no difference in outcomes between those who stopped early and those who stayed on therapy longer.

This shows that early MRD response can be a strong signal for when treatment can safely end.

Blood vs. Bone Marrow MRD: Are Results the Same?

While most results matched, they weren’t identical:

Of those who had uMRD6 in blood by month 9, 70% also had uMRD6 in bone marrow
For those with uMRD5 in blood by month 12, 68% had matching bone marrow results

This means blood testing alone is often—but not always—accurate. It still provides a strong, less invasive tool for guiding treatment decisions.

Do Genetic Features Influence MRD?

The study also looked at how CLL genetic traits affected MRD results:

Patients with trisomy 12 were more likely to reach uMRD6 early
Those with del13q were less likely to achieve early uMRD6
Other markers like TP53 mutations, complex karyotypes, or IGHV mutation status didn’t make a big difference

This may help doctors understand who would benefit most from MRD-guided treatment.

What This Means for CLL Patients

This study supports the idea that MRD testing can personalize treatment duration for venetoclax and obinutuzumab in CLL. Some patients may stop therapy early and still enjoy long-term remission, while others may need the full course.

Additional takeaways:

MRD results from blood and bone marrow samples were mostly similar, but not always the same. This is why your care team may prefer to do both tests to monitor the cancer.
Certain genetic traits may affect how quickly patients reach undetectable MRD.

It’s a promising step toward more tailored treatment plans. More research is underway to refine these approaches, especially for those who don’t reach undetectable MRD by month 12.

Continue Exploring Advancements in CLL Treatments

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Sources:

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Over the last 20 years, progress in increasing survival outcomes for children, adolescents, and young adults with relapsed or refractory T-cell acute lymphoblastic leukemia and T-cell lymphoblastic lymphoma, has been relatively slow.

Chemotherapy resistance and treatment-related mortality are two major barriers to survival. Because of a lack of research conducted in this area, the impact of these factors on survival is not immediately clear. To better understand outcomes among young people with T-ALL and T-LL, a recent study gathered data on rates of complete remission following treatment, the frequency of treatment-related mortality, the number of patients who proceed to stem cell transplant, and survival.

The Study

The study enrolled 112 patients who were under the age of 21 at the time they were diagnosed.

Of the participants enrolled:

93 had T-ALL, and 19 had T-LL
99 study participants were in their first relapse
81 with T-All and 18 with T-LL
Eight had primary refractory disease

Rates of remission highlight potential differences in treatment responses.

Complete remission occurs when signs of disease are no longer detectable. The study found that rates of complete remission were higher in participants with T-ALL (70%) compared to those with T-LL (50%). Most patients with T-ALL who were in first relapse or had refractory disease achieved remission after just one cycle of treatment, while patients with T-LL typically required two cycles to reach remission.

Additional research is needed to better understand treatment-related mortality in T-ALL and T-LL.

Treatment-related mortality, or death related to the treatment, remains a serious concern for children, adolescents, and young adults undergoing an intensive treatment like this one. In the study, 20% of all patient deaths were caused by complications related to treatment rather than the disease itself. There was a trend showing higher rates of TRM in T-ALL patients. However, it is unclear whether T-ALL patients truly have a higher risk of TRM or if the numbers varied because of other factors.

About half of the study participants moved on to stem cell transplant.

Stem cell transplant is an important step in treatment for many patients with relapsed or refractory T-ALL and T-LL, offering a potential path to long-term remission. 52% of participants with T-ALL and 47% of participants with T-LL moved forward to stem cell transplant between 3 and 4 months after the study began. Ongoing research is essential to better understanding the slightly higher transplant rate among T-ALL patients compared to those with T-LL.

Low survival rates in this study highlight the need for additional research.

The three-year overall survival was 41% for patients with T-ALL and 21% for those with T-LL. Similarly, event-free survival, or the time patients remained free from relapse or serious complications, was 39% for T-ALL and 21% for T-LL.

While rates of survival tended to be higher for those with T-ALL than T-LL, there could be other things that contributed to these outcomes. More research with larger patient groups is needed to better understand factors that influence survival and treatment-related risks among these patient groups.

Conclusion

This study provides important information about the present opportunities to improve outcomes in young patients with T-ALL and T-LL. These findings highlight key areas to focus on to improve treatment strategies and increase the number of patients who move forward to transplant and achieve lasting remission.

To continue reading about recent studies like this, check out HealthTree’s News at the link below.

NeoVax Phase 1 Updates for CLL

CLL and the Immune System

Patients with CLL often have compromised immune systems. Given that cancer vaccines depend on the immune system’s ability to recognize and attack cancer cells, the question arises: Can a cancer vaccine be effective in CLL?

The clinical trial’s phase 1 focused on CLL patients with unmutated IGHV who were not yet eligible for standard treatments.

Initially, researchers assessed whether CLL patients had enough targets for a successful personalized vaccine. The study found that 7 out of 9 patients had adequate targets to proceed with vaccination. Four of these patients have completed their therapy, while three are still in treatment.

Does NeoVax Recruit CLL-Killing Immune Cells?

The team then investigated whether NeoVax could trigger an immune response strong enough to fight CLL cells.

Despite patients’ compromised immune systems, researchers discovered that NeoVax could indeed mobilize immune cells, specifically CD4+ and CD8+ T-cells, to target CLL. This was confirmed through various testing methods which showed that these T-cells were actively killing CLL.

Can NeoVax Stop CLL Progression?

The study also looked at whether early treatment with NeoVax could alter the cancer’s progression. Initially, NeoVax by itself appeared effective in reducing cancer cells. However, about 10 months post-vaccination, the cancer often advanced, requiring patients to start treatment with venetoclax and obinutuzumab, standard CLL therapies.

In the group where a patient received NeoVax with low-dose cyclophosphamide, the additional treatment significantly enhanced the vaccine's effectiveness, leading to a sustained reduction in cancer cells. The trial investigators also plan to introduce pembrolizumab to counteract T-cell exhaustion and support the long-term effectiveness of the vaccine.

Key Takeaways

NeoVax successfully recruits cancer-fighting T-cells, initially reducing CLL cell counts. However, when NeoVax is given by itself, the effect is temporary, as cancer cell counts tend to rise again about 10 months after vaccination due to T-cell exhaustion.

Investigators are now exploring different combinations to enhance the vaccine’s effectiveness for a longer period of time.

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Are there any more updates on CLL therapies?

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For older patients over the age of 75 or those who can’t receive intensive chemotherapy, the combination of venetoclax with a hypomethylating agent (Ven/HMA) offers a highly effective alternative. However, the long-term curative potential of this regimen remains uncertain.

Dr. Andrew Zale, resident at The Johns Hopkins Hospital, shared the findings of a retrospective study at the 66th annual ASH conference. This study focused on NPM1-mutated AML patients without FLT3-ITD mutations, and theorized that their AML can be cured with intensive chemotherapy alone.

A retrospective analysis compared overall survival (OS) between patients with favorable-risk NPM1-mutated AML treated with either intensive chemotherapy or venetoclax combined with a hypomethylating agent. The study analyzed 55 patients, aged 60 to 75, from the Johns Hopkins institutional database and used advanced statistical methods to evaluate survival outcomes and contributing factors.

Key Study Findings

Patients treated with intensive chemotherapy were younger and more likely to have undergone treatment before the FDA approved venetoclax
A higher proportion of patients, 69%, underwent transplantation at first remission
Response and Survival Outcomes: Response rates were similar between the two groups. Median overall survival was 6.2 years for the intensive chemotherapy group compared to 4.9 years for the Ven/HMA group.
Factors Influencing Survival:\n
- Higher baseline white blood cell counts were associated with worse survival outcomes
- Transplantation in first remission significantly improved survival
\n

Among Ven/HMA-treated patients who underwent transplantation (37%), survival outcomes were excellent. None experienced a relapse, and only one patient passed due to non-relapse causes.

Takeaway Message

For patients aged 60 to 75 with favorable-risk NPM1-mutated AML, both intensive chemotherapy and venetoclax/hypomethylating agents can offer comparable responses, which can lead to eligibility for stem cell transplant and ultimately, comparable survival outcomes. Choosing between these therapies depends on the patient’s characteristics and individual preferences.

This analysis emphasizes the importance of tailoring treatment decisions to the unique circumstances of each patient. It also highlights the need for alternative therapy options that further improve outcomes, as well as next-generation sequencing for measurable residual disease testing. These findings provide valuable guidance for patients and caregivers navigating treatment options and underscore the evolving landscape of AML management.

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Chronic lymphocytic leukemia (CLL) treatments have come a long way, offering more effective options like oral oncolytic therapies. However, while these therapies can slow disease progression and manage symptoms, they often come with significant challenges beyond medical side effects. Financial strain and the overall impact on daily life can greatly influence how well patients tolerate and adhere to treatment.

The Hidden Burden of Financial Toxicity

Financial toxicity refers to the financial stress and burden caused by the high cost of cancer care. Even with insurance coverage or financial assistance programs, many CLL patients still experience financial strain.

Data presented at the 2024 American Society of Hematology (ASH) Conference in the abstract titled \"Financial Toxicity and Treatment Adherence in Patients with Chronic Lymphocytic Leukemia on First-Line Oral Oncolytic Therapy\" revealed that nearly a third of patients on first-line oral therapy experienced significant financial toxicity within six months of starting treatment.

Patients closer to their treatment centers, those who were unemployed, and minority patients (Black and Hispanic individuals) reported higher levels of financial stress.

This financial strain wasn’t solely due to out-of-pocket costs. Fear of losing financial assistance and the unpredictability of future expenses contributed to patients’ anxiety. This stress can negatively affect a patient's health-related quality of life, leading to emotional distress, fatigue, and even poorer treatment adherence.

How Financial Stress Impacts Treatment Adherence

Sticking to treatment as prescribed is crucial for its success, yet financial burdens can interfere.

The same study revealed that patients experiencing financial stress were more likely to skip doses or struggle with taking their medications consistently. Over time, suboptimal adherence grew, with nearly half of patients missing doses six months into treatment.

Poor adherence was linked to worse functional and social well-being. Fatigue—a common side effect—also played a role, especially for those balancing full-time jobs alongside treatment.

Income and Perceptions of Treatment Tolerability

Another study, presented at the 2024 ASH Conference and titled \"Patient Perceptions of Treatment Tolerability in Hematologic Malignancies: The Role of Income in Shaping Treatment Experience,\" examined how financial situations influence patients' perceptions of treatment tolerability.

Regardless of income, patients prioritized symptom relief, slowing disease progression, and managing side effects. However, those with lower incomes were more concerned about treatment costs, how and where treatments were administered (oral vs. injection, clinic vs. home), and how often treatments occurred.

Lower-income patients also valued how treatments affected their emotional well-being more. This suggests that financial strain can amplify the emotional challenges of managing CLL, highlighting the need for comprehensive support that addresses both medical and emotional needs.

What Does This Mean for You?

If you or a loved one is navigating CLL treatment, it’s essential to recognize that managing financial stress and maintaining emotional well-being is just as important as managing physical side effects. Here are a few steps that might help:

Talk to Your Care Team: Be open with your healthcare providers about any financial concerns or emotional struggles. They can connect you with financial counselors, social workers, or patient assistance programs.
Explore Financial Assistance Options: Look into grants, co-pay assistance, and pharmaceutical patient assistance programs that can help reduce out-of-pocket costs.
Prioritize Self-Care: Managing fatigue and stress improves your well-being and helps you stick to treatment. Simple steps, such as rest, gentle exercise, and mindfulness, can help.
Seek Emotional Support: Counseling, support groups, and talking with loved ones can help manage the emotional toll of treatment. Share your experience with other patients.

Looking Ahead

Addressing financial toxicity and emotional well-being is crucial for improving treatment outcomes in CLL. Patients who feel supported—financially, emotionally, and physically—are more likely to adhere to their treatment plans and maintain a better quality of life.

Healthcare providers and loved ones play a key role in recognizing these challenges and helping patients navigate them.

Remember, you're not alone in this journey. Support is available to help you manage every aspect of your treatment—not just the medical ones.

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For Healthcare Professionals:

Are you a healthcare professional looking for ways to improve CLL patient care? Here are some suggestions based on the results of these studies.

Screen for Financial and Emotional Strain: Incorporate routine assessments of financial toxicity and emotional well-being during patient visits.
Proactively Offer Resources: Connect patients with financial counselors, support groups, and mental health services early in treatment.
Tailor Treatment Plans: Consider treatment frequency, administration methods, and supportive therapies that align with a patient's financial and emotional circumstances.

Sources:

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Although several BTK inhibitors are available, little is known about how people with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) make treatment decisions when choosing between these options.

Reading about other patients' experiences selecting a BTK inhibitor can offer valuable insights to consider during discussions with your doctor.

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What People with CLL/SLL Prioritize in Treatment

To learn what matters most to patients when choosing a BTK inhibitor, a survey was conducted between March and June 2024 led by Sikander Ailawadhi, MD, of the Mayo Clinic. The results were presented at the 2024 ASH conference.

The survey included 200 adults in the United States who had been diagnosed with CLL or SLL. The results showed that when choosing a BTK inhibitor, patients focused on treatments that:

Increased life expectancy: 93% of patients considered this the most important factor
Improved chances of remission or cure: 84% prioritized treatments that could eliminate the cancer
Slowed cancer progression: 67% wanted treatments that could slow down CLL/SLL

While effectiveness was a top concern, side effects also played a major role in decision-making. Most patients (89%) had previously experienced at least one side effect from their treatment. The most common side effects reported were fatigue (76%), diarrhea (51%), headache (51%), and nausea or vomiting (51%).

When comparing specific treatment attributes, the three most important factors for patients were:

The impact of atrial fibrillation on quality of life: Patients ranked this as the most concerning side effect of BTK inhibitors
Progression-free survival (PFS): The longer a treatment kept the cancer from worsening, the more valuable it was
The impact of headaches on quality of life: Patients considered frequent or severe headaches a major downside to treatment

What Patients Were Willing to Trade Off

Patients stated they would reduce 1.5 to 2.5 years of progression-free survival if it meant fewer side effects, such as avoiding significant diarrhea, high blood pressure, major headaches, and severe atrial fibrillation. They also preferred a once-daily treatment instead of a twice-daily regimen, even if that resulted in one year less of PFS.

Why This Matters for Treatment Decisions

These findings highlight the importance of including patient perspectives when selecting a BTK inhibitor. Although extending a patient’s life with treatment is important, supporting their quality of life by reducing difficult side effects is also vital.

Shared decision-making between doctors and patients can help ensure that treatment plans align with both medical effectiveness and patient preferences.

Ask your care team the following questions to ensure your preferences are included in the discussion when selecting a treatment:

What common side effects should I expect from this treatment, and what supportive measures can be given to manage them?
Are there alternative therapies with a lower risk of side effects?
Are there warning signs of serious side effects I should look for?
When should I contact you/the clinic if I am experiencing a side effect?

Looking Ahead

Future research should continue exploring how patient preferences affect treatment choices and outcomes. Understanding these factors can help doctors tailor treatment recommendations, improve patient satisfaction, and support better adherence to therapy. As new treatments become available, ongoing studies will be essential to refine approaches to CLL/SLL care and ensure that patients receive the best possible treatment for their individual needs.

Help your perspective shape research by clicking the button below to participate in simple surveys.

Share Your Input in CLL Research

Source:

\n
Prospective Patient Preference Study for Bruton Tyrosine Kinase Inhibitor (BTKi) Treatment Attributes and Factors Affecting Patient Shared Decision-Making in Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL) in the United States (USA)
\n

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What corticosteroids are and how they work in the body

Corticosteroids work through both \"genomic\" and \"non-genomic\" pathways:

Genomic effects: Once inside a cell, corticosteroids bind to receptors and move into the nucleus to change how certain genes are expressed. This mainly decreases the production of inflammatory molecules.
Non-genomic effects: Corticosteroids can also act quickly at the cell membrane, blocking early stages of inflammation within minutes.

Understanding this is important because it explains why corticosteroids can act both rapidly and over time to control treatment-related symptoms.

Corticosteroids to support blood cancer treatments

Corticosteroids are used before or alongside cancer therapies. The benefits they provide include:

Reducing allergic-like reactions
Managing inflammation
Decreasing nausea and vomiting
Improving a poor appetite

This supportive use helps patients tolerate their blood cancer treatment better and maintain a higher quality of life.

Side effects and what patients should know

While corticosteroids are helpful, they also come with potential risks. Common side effects include:

Increased risk of infections
High blood sugar levels
Mood changes (such as anxiety or irritability)
Weight gain
Bone loss over time

Summary

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Sources:

\n
\"Menin inhibitors are a very exciting new type of therapy,\" explains Dr. Amer Zeidan, Professor of Medicine and Chief of Hematologic Malignancies at Yale University. \"They are pills that target specific alterations that occur in around 40% of patients with acute leukemia.\"
\n

A Treatment Twenty Years in the Making

What Are Menin Inhibitors and Who Could Benefit?

NPM1 mutations: These are more common in younger patients and in those whose leukemia cells look normal under the microscope (what doctors call \"normal karyotype\"). About 30% of AML patients have this mutation.
KMT2A rearrangements: These occur in 5-10% of patients with acute leukemia. Your doctor might particularly suspect this if you've had previous chemotherapy for another cancer, especially breast cancer or lymphoma. These changes often occur in young children with ALL and in a type of AML where the leukemia cells look like monocytes (a type of white blood cell).

\n
\"Between these two alterations, around 40% of patients will have one of those changes. This targeted therapy follows the path of other targeted therapies we have used in AML, such as IDH inhibitors and FLT3 inhibitors,\" notes Dr. Zeidan.
\n

The Current Landscape: Multiple Menin Inhibitors in Development

Early clinical trials with different menin inhibitors are showing some consistent patterns:

About 60% of patients show some response to treatment
Around 25% or more achieve a complete remission
For those who respond, the benefits typically last about 6.5 months
Many patients who respond can proceed to stem cell transplant, which might provide longer-term control of their leukemia
The primary difference between menin inhibitors may be largely related to their safety profile

Several menin inhibitors are being studied:

Revumenib:

The first FDA-approved menin inhibitor (We'll have a detailed article about revumenib coming soon!)

Ziftomenib:

Combined with standard chemotherapy (7+3) in newly diagnosed AML patients
Impressive early results:\n
- Overall, 91% of patients responded to this treatment.
- The majority of patients (>80% in all subgroups) showed a complete remission of leukemia cells, including both NPM1-mutated patients and those with KMT2A rearrangements
- 76% of patients achieved MRD negativity (no detectable disease using sensitive testing)
\n

Bleximenib:

The latest results are from a study with 146 patients with relapsed/refractory acute leukemia, mostly AML\n
- Nearly 50% overall response rate, 38% of patients achieved complete remission, and 14% of patients were able to proceed to transplant so far, although the study is still ongoing
\n
When administered in combination with intensive chemotherapy to treat patients with newly diagnosed AML:\n
- Almost all patients quickly showed some level of response, and 86% achieved a complete remission
\n

Enzomenib:

Enzomenib was designed to improve its specificity to hit its target, potentially reducing the side effects
It has shown activity both when administered alone and when combined with other medications
Response rates:\n
- 65.2% in KMT2A-rearranged leukemia
- 58.8% in NPM1-mutated leukemia
\n
Some patients (34% with KMT2A and 12% with NPM1) were able to proceed to allogeneic transplant
Notably, researchers did not have to alter the dose of enzomenib when prescribing an antifungal medication (also called an azole), which are frequently used to prevent infections in patients with leukemia.

Enzomenib is being studied in an international phase 1/2 study, which is still recruiting participants as of April 2025

What to Know About Menin Inhibitors Side Effects

While each menin inhibitor has its own safety profile, your healthcare team will help you monitor for and manage potential side effects. Here's what you need to know:

Differentiation Syndrome (DS):

Occurs in 10-15% of patients, and it is due to the rapid death of a large number of leukemia cells
Signs include: fever, breathing difficulties, fluid retention or swelling, rashes, low blood pressure, or even kidney failure

When treated early, it is manageable with temporary treatment interruption and steroids, so it is key that patients report any symptoms as soon as possible so the care team can treat them early.

Blood Count Changes:

Changes are common, especially when menin inhibitors are given in combination with chemotherapy
Patients take regular blood tests to monitor the cell counts
Significant changes in cell counts may lead to adjustments in the medication doses.

General Side Effects:

Nausea and vomiting (particularly with some agents)
Generally manageable with supportive care
Patients need to take their temperature twice daily

Managing Expectations

How long do responses last
Whether patients live longer with this treatment
Long-term side effects
Who benefits most from these treatments

\n
As Dr. Laura Michaelis from the Medical College of Wisconsin notes, \"All the data we have so far comes from non-comparative studies [there is no control arm]. We need to wait for randomized trials to really know the impact of these new treatments.\"
\n

Find Open Clinical Trials with Menin Inhibitors

\n
\"When you have a good drug that is active, you try to combine it in earlier lines of treatment with other standard of care treatments,\" explains Dr. Zeidan.
\n

This is exactly what's happening with menin inhibitors:

Studies combining them with standard chemotherapy
Trials with venetoclax and azacitidine combinations
Thoroughly being studied for newly diagnosed patients, relapsed/refractory, and also as maintenance after transplant

Find Open Studies with Menin Inhibitors

Watch our full interview below with Dr. Zeidan, who discusses the latest menin inhibitor research.

What This Means for Patients

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Continue learning about menin inhibitors from the experts. Click here to listen to Dr. Joshua Zeidner's experience with these revolutionary new treatments.

Continue Reading Leukemia News

Sources:

Continue reading to learn how MRD testing may influence your CLL treatment path.

What Is MRD Testing and Why Is It Important?

The clonoSEQ test, used in this study, measured two levels of sensitivity:

uMRD5 (10⁻⁵): Fewer than 1 CLL cell in 100,000 white blood cells
uMRD6 (10⁻⁶): Fewer than 1 CLL cell in 1 million white blood cells

MRD can be tested using either blood or bone marrow samples, and results may differ slightly because the location of CLL cells can vary.

How the Study Used MRD to Adjust Treatment Time

In this trial, 100 people with CLL received venetoclax and obinutuzumab for up to 24 months. How long they stayed on treatment depended on their MRD test results:

If patients had uMRD6 in blood by month 7, they were tested again at month 9. If they still had uMRD6, they stopped treatment early.
If MRD was still detectable at month 7, they stayed on treatment and were retested at month 12.
If uMRD5 was reached at month 12, treatment stopped.
Patients who never reached undetectable MRD continued through the full 24 months.

At the end of treatment, everyone received a bone marrow MRD test to compare to their blood results.

What Were the Results?

50 patients stopped treatment by month 9 (uMRD6)
30 patients stopped by month 12 (uMRD5)
3 patients stopped at 24 months, with 1 reaching uMRD5
The rest either left the trial, chose to continue, or didn’t meet the criteria to stop

By the 24-month mark, 92% of patients had not experienced cancer progression. There was no difference in outcomes between those who stopped early and those who stayed on therapy longer.

This shows that early MRD response can be a strong signal for when treatment can safely end.

Blood vs. Bone Marrow MRD: Are Results the Same?

While most results matched, they weren’t identical:

Of those who had uMRD6 in blood by month 9, 70% also had uMRD6 in bone marrow
For those with uMRD5 in blood by month 12, 68% had matching bone marrow results

This means blood testing alone is often—but not always—accurate. It still provides a strong, less invasive tool for guiding treatment decisions.

Do Genetic Features Influence MRD?

The study also looked at how CLL genetic traits affected MRD results:

Patients with trisomy 12 were more likely to reach uMRD6 early
Those with del13q were less likely to achieve early uMRD6
Other markers like TP53 mutations, complex karyotypes, or IGHV mutation status didn’t make a big difference

This may help doctors understand who would benefit most from MRD-guided treatment.

What This Means for CLL Patients

Additional takeaways:

MRD results from blood and bone marrow samples were mostly similar, but not always the same. This is why your care team may prefer to do both tests to monitor the cancer.
Certain genetic traits may affect how quickly patients reach undetectable MRD.

It’s a promising step toward more tailored treatment plans. More research is underway to refine these approaches, especially for those who don’t reach undetectable MRD by month 12.

Continue Exploring Advancements in CLL Treatments

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Sources:

A Simple Question With Important Implications

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\"We're seeing more patients receiving bone marrow transplants for AML and MDS,\" explains Dr. Balas. \"While this is excellent news, we know that the journey doesn't end with transplant. Understanding how patients experience their health helps us provide better support when they need it.\"
\n

What the Research Found

The findings showed that:

25% of survivors reported their health as \"fair\" or \"poor\"
These patients often needed additional support
Several factors influenced how people rated their health

Understanding What Affects Your Health Experience

The researchers identified several key areas that influenced how patients felt about their health:

\n
Physical Activity: \"We found that exercise plays an important role,\" notes Dr. Balas. \"This doesn't mean you need to run marathons - even gentle movement within your ability can make a difference.\"
\n
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Pain Management: How well pain is controlled significantly affects daily life. Your care team wants to know about any pain you're experiencing so they can help manage it effectively.
\n
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Mental Health: \"Psychological support is just as important as physical care,\" Dr. Balas emphasizes. \"There's no shame in asking for help when you're feeling overwhelmed.\"
\n
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Social and Economic Support: Access to resources and support systems plays a crucial role in recovery.
\n

Why Speaking Up Matters

What This Means for You

If you're recovering from a transplant:

Be honest with your care team about how you're feeling
Don't hesitate to mention challenges, whether physical or emotional
Ask about resources for exercise, pain management, or mental health support
Remember that there's no \"right\" way to feel - everyone's journey is different

Make Your Experience Count

Your journey can help advance blood cancer research and support others. Join HealthTree Cure Hub, our free patient research platform to:

Securely share your experiences and medical records
Contribute to important research that helps improve care for everyone

Join a community dedicated to improving outcomes for everyone affected by AML and MDS.

Create a Cure Hub Account

Source:

Self-Rated Health Is an Independent Predictor of Subsequent Late Mortality after Blood or Marrow Transplantation (BMT) Among Survivors of Myeloid Malignancies: A BMTSS Report

Background

FDA regulations

There is an adverse reaction so serious in potential benefit for the medication.
There is a serious adverse reaction that can be prevented or reduced in frequency or severity by the appropriate use of the medication.
The medications are approved with restrictions on safe use (REMS product).

CAR-T Products

In 2024 FDA decided to add a “Black Box Warning” to all the CAR-T products approved in the US. In a communication from the Agency they explained their rationale:

What should patients know?

Over the past week, two scientific papers provided guidance:

The Journal Bone Marrow Transplantation provides the analysis of 555 patients that were treated over the past few years for Diffuse Large Cell Lymphoma, Mantle Cell Lymphoma Primary Mediastinal B-cell Lymphoma, Follicular Lymphoma, Chronic Lymphocytic Lymphoma. [No myeloma patients were included because of the more recent regulatory approval for Carvykti/Abecma in Europe compared to the US.]
The Journal Nature Medicine presents the follow-up of 783 patients that were treated in Cell Therapy Trials. Myeloma patients were part in this analysis.

There are two key questions for patients :

Is there an incidence of secondary myeloid Neoplasms (NSM) following Car-T therapy? Yes, there is. The report from The Journal Bone Marrow Transplantation shows an incidence rate of 2.5%, with 7.9 months as a median time of onset, and with myelodysplastic syndrome (MDS) occurring in over 90% of cases. The Nature Medicine article reports that 2.3% developed secondary malignancies after treatment, with a median onset of 1.94 years.
Is CAR-T treatment the cause of NSM’s ? NO, there isn’t !! The Journal Bone Marrow Transplantation team explains, ”Among the variables analyzed, elevated CAR-HEMATOTOX scores and thrombocytopenia at 3 months were the only ones significantly associated with SMN development.” [The CAR-HEMATOTOX represents an easy-to-use risk-stratification tool that is helpful in ruling out patients at risk of hematotoxicity.] The Nature Medicine article comments, “The researchers indicated that the rare occurrences of secondary cancers that did occur following CAR T-cell therapy could be attributed to a suppressed immune system from first-line cancer treatments such as radiation and chemotherapy. However, none of the cases among the patients involved in the study were caused by CAR T-cell therapy.”

Conclusion

Keep reading more news and treatment updates with the HealthTree News Site!

Keep Reading More Articles

To learn more about other menin inhibitors, you can read our previous article: Menin Inhibitors: A New Treatment Option for Some Leukemia Patients

How Revumenib Works

Revumenib is a potent, oral, selective inhibitor of menin (a tumor suppressor protein). It prevents menin from binding to the KMT2A gene.

Revumenib in an All-Oral Treatment Combination for Children Over 12 and Adults

We’ll first review the phase I/II study of revumenib with decitabine/cedazuridine and venetoclax (the SAVE study) in relapsed/refractory AML (NCT05360160).

The Study Results

The overall response rate was 88%, with 74% achieving MRD negativity
Twelve patients were able to undergo stem cell transplant
Six months after starting treatment with revumenib, 59% were in remission, and 74% were alive

Most common side effects included alterations in the electrocardiogram (QT prolongation in 58% of patients), liver enzyme elevation, and low white blood cell counts with fever (febrile neutropenia).

These promising results support further investigation in newly diagnosed patients.

An Ongoing Study for Relapsed/Refractory Acute Leukemias

The overall response rate was 64%
23% of patients achieved complete remission that lasted for at least 2 months, and for the majority, more than 6 months
58% of all responders achieved MRD negativity
Of those responding to the treatment, 34% of patients could receive a stem cell transplant after therapy, and nine patients resumed revumenib treatment as maintenance

Final Thoughts

Join Cure Hub Now

Empower yourself! Both patients and caregivers can take charge of their treatment and care by staying informed. Click here to read more exciting Leukemia news!

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Substance Use Is Often Overlooked in Cancer Care

Why Cancer and Substance Use Often Overlap

To read more about opioid use and pain in cancer, visit this article of HealthTree Research findings by clicking the button below.

Managing Pain and Opioid Use for Myeloma Patients

Tobacco and alcohol are the most widely used substances that raise cancer risk.

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Tobacco causes about 30% of all cancer deaths, including 80% of lung cancer deaths. It is also linked to cancers of the mouth, throat, larynx, esophagus, stomach, colon, rectum, pancreas, liver, kidney, bladder, cervix, and even blood cancers. Tobacco not only increases the risk of cancer, but can also produce metabolic and circulation issues in the body that make receiving cancer treatment more challenging.
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Alcohol is responsible for about 3.5% of cancer deaths. The risk is proportional to the intake; higher amounts over long periods pose a higher risk. For women, heavy use means more than 4 drinks per day or 8 per week. For men, it’s more than 5 drinks per day or 15 per week. Alcohol is processed by the liver and can interfere with the metabolism of other cancer treatments, increase the risk of worse side effects, and, in some cases, inactivate the medication.
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These facts are important because quitting tobacco and reducing alcohol use, even after a cancer diagnosis, can still lower future cancer risks and improve health.

Other Substances That Can Complicate Cancer Treatment and Health

Aside from tobacco and alcohol, the following substances are also frequently seen among patients and can interfere with treatment:

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Cannabis or marijuana is a natural opioid that can be synthesized into CBD. It can be prescribed by a doctor and administered under controlled conditions. Medical-grade marijuana has strict sanitary regulations and can be beneficial for many people. There is a risk of fungal infection of the lungs associated with marijuana produced in unofficial or unsanitary settings. You can read more about safe uses of cannabis and its risks from the American Thoracic Society here.
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Anabolic steroids are the most commonly used drugs among athletes to improve physical performance and aesthetic appearance. These drugs interact with hormone cycles and can also have a negative impact on other organs such as the liver, the cardiovascular, central nervous, musculoskeletal, endocrine, and reproductive systems. It is important to note that anabolic steroids are different from the commonly used steroids in cancer treatments.
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Injection drugs, including heroin. These drugs are administered directly into the veins, and their use has risks besides addiction. They can cause vascular strokes, blood and tissue infections, and blood-transmitted diseases like hepatitis and HIV.
Prolonged use can affect the main veins, limiting the option for intravenous cancer medications or increasing the need for longer hospital stays to monitor its applications.
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Synthetic drugs, such as methamphetamine (“meth” or “crystal”) is associated with liver cancer and affects psychiatric and physical performance. It is a toxic chemical substance for multiple organs, including the heart, brain and other liver.
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Cocaine is a powder absorbed by the mucous membranes. While cocaine’s impact on cellular processes is not fully understood, researchers speculated that the drug might stimulate white blood cell activity and growth. This could potentially speed up the formation of genetic errors that could lead to cancer. Read more about the link of cocaine and cancer here.
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Challenges in Coordinating Cancer and SUD Treatment

Patients taking naltrexone for alcohol use disorder may not be able to use certain cancer pain treatments that act on the same parts of the brain.

How Does Stigma Affect People With Substance Use Disorders?

Reducing Stigma and Improving Support

When harm reduction strategies are used with all patients, stigma can be reduced, and more people feel safe sharing their needs.

The way we name things impacts stigma around substance use disorders

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n

\n Preferred terms that do not stigmatize \n	\n Common terms that might stigmatize \n	\n Why change the language we use? \n
\n Person or patient *with* a: \n \n \n Substance use disorder \n \n \n Opioid use disorder \n \n \n Alcohol use disorder \n \n \n	\n Someone who is a/an: \n \n \n Junkie \n \n \n Addict \n \n \n Alcoholic \n \n \n	\n \n \n Person-first language \n \n \n Demonstrates a person “has” a problem, rather than “is” the problem \n \n \n Avoids negative associations or personal blame \n \n \n
\n \n \n Use (illicit substance) \n \n \n Misuse (prescription medications) \n \n \n	\n \n \n Substance abuse \n \n \n	\n \n \n “Abuse” is associated with negative judgments and punishment \n \n \n
\n \n \n Substance-free \n \n \n Expected/unexpected findings \n \n \n	\n \n \n Clean or dirty \n \n \n Positive/negative \n \n \n	\n \n \n Preferred terms are clinically accurate, non-stigmatizing \n \n \n
\n \n \n Recovery \n \n \n Remission \n \n \n Substance-free \n \n \n	\n \n \n Clean \n \n \n Sober \n \n \n	\n \n \n Preferred terms are clinically accurate and non-stigmatizing, similar to other medical conditions \n \n \n
\n \n \n Addiction \n \n \n	\n \n \n Habit \n \n \n Behavior \n \n \n	\n \n \n Substance use disorders are medical conditions \n \n \n “Habit” or “behavior” is inaccurate and implies control \n \n \n

Chart from Addiction in Patients With Cancer: Challenges and Opportunities

Sourced from National Institute on Drug Abuse (2020)

Moving Toward More Inclusive, Effective Cancer Care

For more information and help for people with substance use disorders, you can visit the following assistance resources:

SAMHSA - Substance Abuse and Mental Health Services https://www.samhsa.gov/

Medication Assistance Therapy Care Clinic https://www.matcareclinics.com/

American Addiction Centers https://drugabuse.com/addiction/health-issues/cancer/

CDC Mental Health Resources https://www.cdc.gov/mental-health/caring/index.html#:~:text=Key%20points,to%20the%20nearest%20crisis%20center.

American Society of Addiction Medicine https://www.asam.org/

Start Your Recovery Organization https://startyourrecovery.org/experiences/co-occurring-disorders

Sources:

Can adding ibrutinib make CAR T-cell therapy more effective for people with CLL? Discover promising study results and find out how you may be able to participate.

Liso-cel’s impact when used alone for CLL

Liso-cel (Breyanzi, BMS) is an FDA-approved CAR T-cell therapy for people with CLL who have already been treated with both a BTK inhibitor and a BCL-2 inhibitor.

Combining liso-cel with ibrutinib for better outcomes

Dr. Wierda presented the trial’s encouraging results at the 2024 ASH conference. They showed:

Overall response rate: 86%
Complete response rate: 45%, significantly higher than with liso-cel alone
Undetectable minimal residual disease (uMRD4): Cancer cells were undetectable in 86% of patients’ blood samples using highly sensitive tests
Duration of response: Among patients who responded, remission lasted an average of 41.4 months, demonstrating long-term effectiveness

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Summary

If you're interested in this approach, review your eligibility to join the TRANSCEND CLL 004 trial or consult your CLL specialist.

Study Details

280 patients participated and received brexu-cel, and 26% were 60 or older. They had undergone a median of three prior lines of therapy, including:

Allogeneic hematopoietic stem cell transplantation: 38%
Inotuzumab ozogamicin (BESPONSA): 41%
Blinatumomab (Blincyto): 62%

Treatment Response

Before receiving brexu-cel, 45% of patients had active disease, 47% were in complete remission, of whom 14 showed no measurable residual disease.

After receiving brexu-cel, 59% of patients achieved MRD-negative complete remission, and 27% had complete remission with detectable disease.

Brexu-cel Benefited Patients of All Age Groups

No significant differences were observed in overall survival or progression-free survival at 6 months between age groups.

Side Effects of Brexucabtagene Autoleucel by Age

Conclusion and Future Directions

If you want to keep learning more about news on treatments, clinical trials and conferences you can bookmark the HealthTree News site and browse through our different article categories.

Keep Reading More Articles

Source:

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Efficacy and Safety of Brexucabtagene Autoleucel for Relapsed/Refractory B-Cell Acute Lymphoblastic Leukemia in Patients Aged 60 and Above
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Ongoing Study Shows High Remission Rates in Younger AML Patients

The phase II ongoing trial (NCT02115295) enrolled 95 patients with a median age of 49 years old who were newly diagnosed with:

Acute myeloid leukemia (90%)
Mixed phenotype acute leukemia (3%)
High-risk myelodysplastic syndrome (7%)

We had the opportunity to interview the lead investigator of this study, Dr. Tapan Kadia, who shared insights into the study results.

How Effective Was the Combination?

Patients received one to six cycles, with a median of one cycle required to achieve remission
93% of patients achieved a complete response
Overall response rate of 95%
82% of AML patients who achieved a composite complete response were also MRD negative
For AML, the relapse-free survival was 78% at one year, and for MDS, it was 86%
The 2-year probability of survival was estimated at 73% for AML and 100% for high-risk MDS patients

What Were the Most Common Side Effects?

All patients experienced low blood counts during treatment, which is expected with intensive chemotherapy. This led to:

Neutropenic fever (high temperature due to very low white blood cell counts) in about 8 out of 10 patients
A recovery period of approximately 4 weeks for blood counts to return to safer levels
Need for close monitoring and supportive care during this time

Other significant side effects included:

Infections: About 3 in 10 patients developed bloodstream infections, and 2 in 10 developed pneumonia
Gastrointestinal: About 1 in 7 patients experienced inflammation of the bowel (colitis)
Liver: Some patients showed temporary changes in liver function tests

The Importance of New Treatment Combinations

Using new treatment combinations can increase the number of patients with different diagnoses who can receive a treatment that quickly and effectively controls their cancer cells.

These findings highlight the potential of CLIA-venetoclax as a powerful induction therapy that offers deep and sustained remissions in high-risk patients.

To keep reading more articles like this one, you can browse our HealthTree News section, where you’ll find different article categories.

CONTINUE READING NEWS

Source:

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A Phase II Trial of Venetoclax in Combination with Cladribine, Idarubicin, and Cytarabine in Newly Diagnosed Acute Myeloid Leukemia and High-Risk Myelodysplastic Syndrome
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How Blood Cancer Treatments and Other Risk Factors May Impact Brain Function

Several factors can contribute to changes in brain function as a result of blood cancer treatment.

The treatments themselves, like chemotherapy, targeted therapy, radiation, and immunotherapy, can affect brain health by:

Crossing the barrier that protects your brain and directly impacting brain cells.
Triggering inflammation through immune system activation, which clouds brain function.
Remaining oxidative stress after treatment—caused by too many free radicals and not enough antioxidants—can damage healthy cells and trigger inflammation, affecting areas like the brain.

Factors That Increase Your Risk

Even without treatment, cancer cells can increase inflammation in the body, which may dampen brain function.

What Do Symptoms Look Like?

The brain-related symptoms you may experience from certain blood cancer treatments may include:

Mild to moderate symptoms: trouble thinking clearly, confusion, fatigue, headaches
More serious issues (rare): difficulty speaking, tremors, seizures

Tips for Recovery

If your brain-related symptoms aren’t improving over time, it’s important to get help. Here are some supportive strategies:

Consult with your blood cancer specialist: Talk to your doctor about ways to manage treatment side effects. For example, if you're experiencing headaches from a cancer therapy, ask what can help. They might recommend adding a headache-relief medication, adjusting the dose, or switching to a different treatment.
Nutrition support: Work with a registered dietitian to reduce inflammation and address nutrient gaps that directly impact brain health.
Visit a functional neurologist: See a functional neurologist who can pinpoint which areas of your brain need support and create a personalized therapy plan using targeted eye, hand, or balance exercises to help strengthen them. They may also suggest adding certain medications. This differs from a neurologist, who focuses mostly on medication to treat symptoms.
Mental health support: A licensed therapist can help you manage stress, anxiety, or trauma, and teach coping skills—like mindfulness and breathing techniques—that may reduce inflammation and improve your quality of life.
Lifestyle habits: Getting enough sleep, staying hydrated, exercising moderately, and eating nutrient-dense foods can support brain health.

Key Takeaways

Brain-related side effects from blood cancer treatments can occur and range from mild brain fog to more serious neurological issues.

Even if side effects are expected, working closely with your care team is key to finding the right solutions for your cognitive health and overall well-being.

Discover Patient-Reported Side Effect Solutions

Access Side Effect Solutions

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Sources:

The Committee's main responsibility is to distribute federal funds that ensure that agencies like the FDA and the NIH have the necessary resources to drive scientific discoveries.

During the hearing, several experts and advocates testified, sharing their views on the benefits of federal funding and the urgent need for continued investment in life-saving research.

Federal Funds Advance Discovery, Save Lives, and Offer Hope

Maintaining strong federal support allows researchers to keep making progress, develop new treatments faster, and expand access to clinical trials for patients across the country.

Investing in Innovation and Public Health

How You Can Help Advance Research Through Your Experience

Click the buttons below to access these simple surveys and to learn the results of past patient-accelerated research.

Make an Impact with Brief Blood Cancer Surveys

News Updates on Real-World Research

Sources:

May is Mental Health Awareness Month

The prevalence of depression and anxiety among individuals diagnosed with cancer is increasing

Studies show that 35–40% of people with cancer have a diagnosable mental health condition. Despite this, patients remain underdiagnosed and undertreated due to a variety of barriers such as:

Stigma around mental health,
Lack of routine mental health screening in oncology settings, and
Limited access to specialized psychological support.

People with cancer are more likely to experience depression and anxiety than the general population

Two of the most common mental health conditions in people with cancer are:

Depression-characterized by loss of interest and a lasting feeling of sadness. A person with depression may have fatigue, trouble concentrating, difficulty sleeping, or irritability.
Generalized Anxiety Disorder-characterized by intense feelings of restlessness, tension, uneasiness, or a constant sense of dread. These symptoms are different from the occasional worry or fear.

Many factors contribute to the poor identification and treatment of mental health conditions

Addressing mental health challenges improves outcomes

Mental health treatment is just as important as treating the physical aspects of blood cancer

This month, and every month, HealthTree is committed to providing education, resources, and support to empower patients to seek care for both their bodies and minds.

Many techniques can improve how a person feels and functions throughout cancer treatment.

Explore practical tools and resources you can use to improve mental health:

You can read more about protecting your mental health by clicking the button below:

Protecting Your Mental Health

Connect With A Coach

Help is always available

Source:

Mental health needs in cancer – a call for change

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What Is Thrombocytopenia?

A New Medication To Improve Platelet Levels

Eltrombopag treats low platelet counts (thrombocytopenia) in CMML patients, as well as in adults and children with chronic immune thrombocytopenic purpura and severe aplastic anemia.

What Are the Side Effects of Eltrombopag?

Some side effects that may occur with this use of this treatment include:

Swelling of the face, hand, lower legs or feet
Fatigue
Chills
Cough
Fever
Nausea
Loss of appetite
Rash

A New Clinical Trial

This trial lasted for 12 weeks:

Patients received eltrombopag at a starting dose of 100 mg once daily, which was later changed to 50 mg/day.
The Dose was adjustable up to 300 mg/day.
Patients responding well could continue the treatment for up to 24 months.
This group had an overall survival rate of 47% and a two-year progression-free survival rate of 23%.

Conclusion

Become your best self advocate with HealthTree, we provide free resources to help you stay on top of your health!

Keep Learning More

Source:

Eltrombopag in chronic myelomonocytic leukemia with severe thrombocytopenia. A Groupe Francophone des Myélodysplasies (GFM) study

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Expanding pirtobrutinib’s role beyond bypassing BTK resistance

Pirtobrutinib’s effectiveness for high-risk patients not treated with covalent BTK inhibitors

Recent research indicated that pirtobrutinib provides exceptional responses in patients who have not previously received covalent BTK inhibitors, even among those with high-risk features.

The study reviewed 35 patients who received an average of two prior treatments, including either chemotherapy, venetoclax, anti-CD20 antibodies, or other systemic therapies.

The results were highly promising, with the following patient groups experiencing a partial or full reduction of CLL cells (overall response rate [ORR]):

17p deletion CLL: 100% ORR
TP53-mutated CLL: 85.7% ORR
Unmutated IGHV CLL: 90.0% ORR
Complex karyotype CLL: 100% ORR

Moving pirtobrutinib to front-line CLL treatment

The BRUIN CLL-313 trial is evaluating pirtobrutinib by itself as the first treatment for CLL/SLL patients.
The BRUIN CLL-314 trial is reviewing pirtobrutinib as a standalone treatment for individuals with CLL/SLL as their first therapy or for those who have not previously received BTK inhibitors.

Although the above phase 3 studies are active but not recruiting, ask your CLL specialist about innovative treatments available in clinical trials or discover them here.

We need your help! Easily contribute to CLL research

Make an Impact with Brief CLL Surveys

See Patients’ Progress: Research Results News

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\"Menin inhibitors are a very exciting new type of therapy,\" explains Dr. Amer Zeidan, Professor of Medicine and Chief of Hematologic Malignancies at Yale University. \"They are pills that target specific alterations that occur in around 40% of patients with acute leukemia.\"
\n

A Treatment Twenty Years in the Making

What Are Menin Inhibitors and Who Could Benefit?

NPM1 mutations: These are more common in younger patients and in those whose leukemia cells look normal under the microscope (what doctors call \"normal karyotype\"). About 30% of AML patients have this mutation.
KMT2A rearrangements: These occur in 5-10% of patients with acute leukemia. Your doctor might particularly suspect this if you've had previous chemotherapy for another cancer, especially breast cancer or lymphoma. These changes often occur in young children with ALL and in a type of AML where the leukemia cells look like monocytes (a type of white blood cell).

\n
\"Between these two alterations, around 40% of patients will have one of those changes. This targeted therapy follows the path of other targeted therapies we have used in AML, such as IDH inhibitors and FLT3 inhibitors,\" notes Dr. Zeidan.
\n

The Current Landscape: Multiple Menin Inhibitors in Development

Early clinical trials with different menin inhibitors are showing some consistent patterns:

About 60% of patients show some response to treatment
Around 25% or more achieve a complete remission
For those who respond, the benefits typically last about 6.5 months
Many patients who respond can proceed to stem cell transplant, which might provide longer-term control of their leukemia
The primary difference between menin inhibitors may be largely related to their safety profile

Several menin inhibitors are being studied:

Revumenib:

The first FDA-approved menin inhibitor (We'll have a detailed article about revumenib coming soon!)

Ziftomenib:

Combined with standard chemotherapy (7+3) in newly diagnosed AML patients
Impressive early results:\n
- Overall, 91% of patients responded to this treatment.
- The majority of patients (>80% in all subgroups) showed a complete remission of leukemia cells, including both NPM1-mutated patients and those with KMT2A rearrangements
- 76% of patients achieved MRD negativity (no detectable disease using sensitive testing)
\n

Bleximenib:

The latest results are from a study with 146 patients with relapsed/refractory acute leukemia, mostly AML\n
- Nearly 50% overall response rate, 38% of patients achieved complete remission, and 14% of patients were able to proceed to transplant so far, although the study is still ongoing
\n
When administered in combination with intensive chemotherapy to treat patients with newly diagnosed AML:\n
- Almost all patients quickly showed some level of response, and 86% achieved a complete remission
\n

Enzomenib:

Enzomenib was designed to improve its specificity to hit its target, potentially reducing the side effects
It has shown activity both when administered alone and when combined with other medications
Response rates:\n
- 65.2% in KMT2A-rearranged leukemia
- 58.8% in NPM1-mutated leukemia
\n
Some patients (34% with KMT2A and 12% with NPM1) were able to proceed to allogeneic transplant
Notably, researchers did not have to alter the dose of enzomenib when prescribing an antifungal medication (also called an azole), which are frequently used to prevent infections in patients with leukemia.

Enzomenib is being studied in an international phase 1/2 study, which is still recruiting participants as of April 2025

What to Know About Menin Inhibitors Side Effects

While each menin inhibitor has its own safety profile, your healthcare team will help you monitor for and manage potential side effects. Here's what you need to know:

Differentiation Syndrome (DS):

Occurs in 10-15% of patients, and it is due to the rapid death of a large number of leukemia cells
Signs include: fever, breathing difficulties, fluid retention or swelling, rashes, low blood pressure, or even kidney failure

When treated early, it is manageable with temporary treatment interruption and steroids, so it is key that patients report any symptoms as soon as possible so the care team can treat them early.

Blood Count Changes:

Changes are common, especially when menin inhibitors are given in combination with chemotherapy
Patients take regular blood tests to monitor the cell counts
Significant changes in cell counts may lead to adjustments in the medication doses.

General Side Effects:

Nausea and vomiting (particularly with some agents)
Generally manageable with supportive care
Patients need to take their temperature twice daily

Managing Expectations

How long do responses last
Whether patients live longer with this treatment
Long-term side effects
Who benefits most from these treatments

\n
As Dr. Laura Michaelis from the Medical College of Wisconsin notes, \"All the data we have so far comes from non-comparative studies [there is no control arm]. We need to wait for randomized trials to really know the impact of these new treatments.\"
\n

Find Open Clinical Trials with Menin Inhibitors

\n
\"When you have a good drug that is active, you try to combine it in earlier lines of treatment with other standard of care treatments,\" explains Dr. Zeidan.
\n

This is exactly what's happening with menin inhibitors:

Studies combining them with standard chemotherapy
Trials with venetoclax and azacitidine combinations
Thoroughly being studied for newly diagnosed patients, relapsed/refractory, and also as maintenance after transplant

Find Open Studies with Menin Inhibitors

Watch our full interview below with Dr. Zeidan, who discusses the latest menin inhibitor research.

What This Means for Patients

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Continue learning about menin inhibitors from the experts. Click here to listen to Dr. Joshua Zeidner's experience with these revolutionary new treatments.

Continue Reading Leukemia News

Sources:

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A Path Through Adversity: Signs of Post-Traumatic Growth

One of the most uplifting findings of the survey was that many patients are experiencing growth as a result of their cancer experience.

Changed Priorities: 75% of respondents said their values shifted moderately or more as a result of their diagnosis
Appreciation for the Value of Life: 80% gained a moderate or deeper appreciation for life’s value
Increased Resilience: 68% now feel moderately or more confident handling difficulties
Personal Strength and Connection: Many discovered they were stronger than they thought and gained a greater sense of closeness with others

\n
“I learned a great deal about how wonderful people are,” one respondent reflected—an insight shared by 84% of participants.
\n

What Flourishing Looks Like Today

The survey invited participants to rate how they feel today in several aspects of daily living.

Life Satisfaction and Happiness

Despite the physical and emotional challenges of living with blood cancer, patients have:

7.10 out of 10 average life satisfaction
7.1 out of 10 happiness rating

Many respondents reported feeling generally satisfied with life, with 50% scoring themselves 8 or higher.

Mental and Physical Health

Meaning and Purpose

The survey also found high levels of personal meaning and purpose:

86% of people feel the things they do in life are worthwhile
7.2 out of 10 average understanding of their life's purpose

Faith and Spirituality: Meaning Beyond Medicine

The survey revealed a wide range of spiritual and religious experiences and beliefs.

85% believe in God or a higher power
37% believe God is active in their lives
26% believe in a higher power or divine being
66% attend religious services
64% engage in personal spiritual practices monthly or more

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Why This Research Matters

This survey serves as a powerful reminder that a cancer diagnosis touches every aspect of a person’s life, not just the physical.

\n
“We need to understand not just how patients survive—but how they thrive.” shared HealthTree's research team.
\n

Add Your Voice

Participate in the Flourishing Survey

To learn more about other menin inhibitors, you can read our previous article: Menin Inhibitors: A New Treatment Option for Some Leukemia Patients

How Revumenib Works

Revumenib is a potent, oral, selective inhibitor of menin (a tumor suppressor protein). It prevents menin from binding to the KMT2A gene.

Revumenib in an All-Oral Treatment Combination for Children Over 12 and Adults

We’ll first review the phase I/II study of revumenib with decitabine/cedazuridine and venetoclax (the SAVE study) in relapsed/refractory AML (NCT05360160).

The Study Results

The overall response rate was 88%, with 74% achieving MRD negativity
Twelve patients were able to undergo stem cell transplant
Six months after starting treatment with revumenib, 59% were in remission, and 74% were alive

Most common side effects included alterations in the electrocardiogram (QT prolongation in 58% of patients), liver enzyme elevation, and low white blood cell counts with fever (febrile neutropenia).

These promising results support further investigation in newly diagnosed patients.

An Ongoing Study for Relapsed/Refractory Acute Leukemias

The overall response rate was 64%
23% of patients achieved complete remission that lasted for at least 2 months, and for the majority, more than 6 months
58% of all responders achieved MRD negativity
Of those responding to the treatment, 34% of patients could receive a stem cell transplant after therapy, and nine patients resumed revumenib treatment as maintenance

Final Thoughts

Join Cure Hub Now

Empower yourself! Both patients and caregivers can take charge of their treatment and care by staying informed. Click here to read more exciting Leukemia news!

The Study

The study enrolled 112 patients who were under the age of 21 at the time they were diagnosed.

Of the participants enrolled:

93 had T-ALL, and 19 had T-LL
99 study participants were in their first relapse
81 with T-All and 18 with T-LL
Eight had primary refractory disease

Rates of remission highlight potential differences in treatment responses.

Additional research is needed to better understand treatment-related mortality in T-ALL and T-LL.

About half of the study participants moved on to stem cell transplant.

Low survival rates in this study highlight the need for additional research.

Conclusion

To continue reading about recent studies like this, check out HealthTree’s News at the link below.

Understanding the basics: What are CML and CLL?

CML and CLL are both long-developing blood cancers that begin in the bone marrow—the soft tissue inside bones that produces blood cells.

Knowing the cell type involved helps determine the best treatment approach and how the condition may progress.

Symptoms can be similar

Many individuals with CML or CLL may not notice any symptoms at the time of diagnosis. Often, the cancer is discovered during routine blood tests.

When symptoms are present, they may include:

Fatigue
Fever, chills, or night sweats
Unexplained weight loss
Bone or abdominal pain
Feeling full quickly when eating

In addition, CLL may cause swollen lymph nodes, especially in the neck, underarms, or groin.

These symptoms happen because the abnormal white blood cells don’t function normally and can build up in the body over time.

How CML and CLL affect healthy blood cell production

Both types of leukemia lead to the overproduction of abnormal white blood cells, which can crowd out healthy cells in the bone marrow. This can result in several complications:

Anemia – a low red blood cell count, causing fatigue and shortness of breath
Leukopenia – a low white blood cell count, raising infection risk
Neutropenia – a decrease in neutrophils, the cells that target harmful microorganisms
Thrombocytopenia – a shortage of platelets, which can cause easy bruising or bleeding

Understanding these complications helps individuals recognize how the cancer can impact everyday health and the importance of regular blood monitoring.

Treatment approaches are not the same

The type of treatment used for CML or CLL depends on the biology of the condition and how fast it is progressing.

Common TKIs for CML include:

Imatinib (Gleevec, Novartis)
Dasatinib (Sprycel, Bristol Myers Squibb)
Nilotinib (Tasigna, Novartis)
Bosutinib (Bosulif, Pfizer)
Asciminib (Scemblix, Novartis)

In advanced cases or when TKI treatment is not effective, a stem cell transplant from a donor may be considered.

CLL treatment is often given only when treatment-indicating symptoms arise. Once treatment is needed, commonly used targeted therapies include:

BTK inhibitors block signals that help CLL cells grow
Venetoclax (Venclexta, AbbVie) helps trigger cell death in CLL cells
Immunotherapies like obinutuzumab (Gazyva, Genentech) or CAR T-cell therapy liso-cel (Breyanzi, BMS), help the immune system target and remove CLL cells

In rare cases, a donor stem cell transplant may also be an option for CLL if other treatments stop working.

These treatment differences are important because they reflect how each leukemia grows and responds to therapies.

Long-term outcomes

CLL typically has a higher five-year survival rate compared to CML, but this depends on the individual’s age, overall health, and the phase or risk group of the cancer.

CML, when treated early and effectively with TKIs, can often be managed for many years. People with CLL can also live for many years with sequenced therapies.

Understanding treatment options and possible complications empowers people to take an active role in their care.

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Key takeaways

We need your help! Easily contribute to CLL or CML research

Take Simple CLL Surveys

Take Simple CML Surveys

Sources: