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Diane’s CLL Diagnosis

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.

Visiting a CLL Specialist

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.

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.

Researching CLL Topics to Help Decrease Anxiety

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.

Diane’s Preference for a Fixed-Duration Therapy

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.

Lifestyle Changes During Watch and Wait - Nutrition and Qigong

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.

\n
“This is the kind of stuff I like to immerse myself in, it makes me feel good and gives me hope.” - Diane.
\n

A New Perspective on Life

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.

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.

$\"\"$

Are You Interested in Helping Other CLL Patients?

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.

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“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.”
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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.

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\"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.\"
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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.

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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.

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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.

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Prepping Against Side Effects

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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.

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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.

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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.

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Diagnosed

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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.

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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.

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

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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.

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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.

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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.

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CAR T and hope for the future

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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?

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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.

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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.

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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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Photo: Debbie Lamb, Ed Lamb, and grandchildren

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CLL patient Debbie Lamb has a greater sense of gratitude for life after her CLL diagnosis. Her service of others helps her find meaning and joy in life.

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Debbie Lamb went to her annual physical with her internist in the fall of 2019 and her doctor noticed an elevated white blood cell count. The labs were duplicated with the same results and her doctor told her that she could have CLL.

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It was complicated timing because although much of their family life had been in Utah, they were currently living in Illinois with her husband Ed working on a temporary assignment running a network of hospitals. They were also in the middle of entering retirement after Ed's successful career in healthcare. Debbie contacted a former doctor in Utah who told the current treatment center what additional labs to run to confirm the diagnosis. Those labs were run in December 2019 and January 2020.

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The CLL diagnosis needed a bone marrow biopsy for complete confirmation, but with COVID-19 hitting the healthcare scene, all procedures were put on hold. She did not receive her bone marrow biopsy until May 2020.

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Her doctor told her that without symptoms or significantly elevated labs, they would not treat her but would check her labs every six months. When she got her third COVID booster, she had swollen lymph nodes which put her on alert that her CLL might be waking up. However, the swelling went down shortly after the shot was given.

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Like any CLL patient, having a cancer diagnosis was a worry. Debbie says that she went through the 7 stages of grief circling back through some of the stages because facing death is never an emotionally orderly process. As Debbie says, "You don't just go through grief stages once."

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Once she went through the initial grief, she said that she started looking at her life differently.

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"The diagnosis reminded me of the true gift of life. We all know we are going to die at some point, but having CLL has given me a gift of appreciating the life I'm living in a more heightened way."
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Over 2020 and into 2021, her labs increased slightly but there were no significant increases of infections or other CLL symptoms. So, she and her husband Ed decided to serve a humanitarian mission in Chile. In May of 2021, they left on their mission leaving behind x kids and x grandkids.

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Debbie says that "Ninety percent of the time I forget I have CLL." Sometimes, CLL patients can feel as though they are waiting for the other shoe to drop, but Debbie chooses not to live her life in that way. She exercises every day either with walking, weights, or yoga and says that it helps her mental health significantly.

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She is supported by her husband and family but her faith gives her spiritual strength to not just move forward, but to enjoy the meaningful life that she has been given. She comments that in a strange way, CLL has been a blessing because she is savoring every moment and has an intensified gratitude for life.

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Debbie and her husband Ed are serving a humanitarian mission for her church. In Chile, the mission is to help relieve suffering and foster self-reliance with a focus on primary healthcare, education, and community support.

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Debbie and Ed help deliver ophthalmology equipment, clinical beds, transport beds, lab equipment, dental chairs, scales to weigh babies, GYN beds, and many other items to 6 hospitals, 8 Family Clinics, 35 rural health posts, and 15 rural health stations from Antofagasta to the Island of Chiloé. More than 400,000 lives have benefited from these donations so far.

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$\"\"$

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They have helped deliver 4,500 school kits to rural schools covering 50 schools in 12 districts. Education equipment like computers, tablets, projectors, and interactive screens have been donated to schools that work with children with learning disabilities in several locations in the country from Arica to Chiloé. Playground equipment has also been an important donation to Jardine’s Infantile.

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They also help provide support to soup kitchens, homeless shelters, and homes for the elderly. Items such as stoves, beds, wheelchairs, lifts, refrigerators, washers, dryers, cooking utensils, hygiene kits, food kits, and other basic tools have been donated to help support people in an emergent crisis or need.

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$\"\"$

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Their service has helped with the emotions and reality of having a CLL diagnosis.

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"I'll be here for as long as I'm supposed to be and in the meantime, I will enjoy every sunset, time playing with my grandkids, and my ability to serve others. After we complete this mission in June of 2023, we'll stay home for a year to spend time with family and then we will serve another mission, which has been one of the most rewarding and joyful experiences of my lifetime."
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She realized that her reaction to her situation was a choice.

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"I decided that I could either live in fear or in faith. I am going to choose faith."
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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.

!AD!

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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!AD!

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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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!AD!

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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Take the Substance Use and Environmental Exposure Survey

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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).

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

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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.

\n\n

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).

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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.

We need your help! Easily contribute to blood cancer research

If you are living with blood cancer, 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 button below to get started!

Make an Impact with Brief Blood Cancer Surveys

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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.

We need your help! Easily contribute to CLL or CML research

If you are living with CML or 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 one of the buttons below to get started!

Take Simple CLL Surveys

Take Simple CML Surveys

Sources:

","language":"EN","metaDescription":"Learn the key differences between CML and CLL, including symptoms, treatments, and outcomes, to better understand your care options.","metaTitle":"CML vs CLL: Similarities and Differences","publishedAt":{"_type":"Date","value":"Mon Apr 28 2025 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"CML vs CLL, differences between CML and CLL, chronic myeloid leukemia, chronic lymphocytic leukemia, CML symptoms, CLL symptoms, CML treatment options, CLL treatment guide, what is the Philadelphia chromosome, CML and CLL comparison","slug":"cml-vs-cll-differences-symptoms-treatment","status":"ACTIVE","title":"CML vs CLL: Similarities and Differences","updatedAt":{"_type":"Date","value":"Tue Apr 29 2025 23:58:13 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:03 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":"myeloma-basics","sectionConfig":{"news":{"description":"Our Core Education articles help you understand your cancer so you are equipped to find a good care team, ask appropriate questions, and become your own best advocate.","metaDescription":"Learn 101 Education to help you know more about your cancer, what tests and treatments are available to you, and more.","metaTitle":"Core Education - HealthTree Foundation","order":3,"tileOrder":3,"type":"LARGE_TILE"}},"sections":["NEWS"],"slug":"core-education","status":"ACTIVE","title":"Core Education","updatedAt":{"_type":"Date","value":"Fri Apr 12 2024 20:21:23 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"snapshot":{"exists":true,"id":"MB3xw38fuKkx0LdszsrL","ref":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/iQDOGc9BFvshNyPYMyKW"},"snapshot":{"exists":true,"id":"iQDOGc9BFvshNyPYMyKW","ref":{"_type":"DocumentReference","path":"apps/community/articles/iQDOGc9BFvshNyPYMyKW"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/dtN24frUcPS1CRElyXh1"},"categories":[{"_type":"DocumentReference","path":"apps/community/articleCategories/WEPsQuvYm62UR7vv8fW1"}],"category":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"createdAt":{"_type":"Date","value":"Fri Apr 28 2023 14:23:40 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_2120158061_6f41f278-38d5-4165-bb71-f87fd0df5933.jpg%253Falt%253Dmedia","htmlContent":"

What is a comprehensive metabolic panel (CMP)? How is this test useful for people with chronic lymphocytic leukemia (CLL)? Learn answers to these questions below!

How Does a Comprehensive Metabolic Panel Help Someone with CLL?

A comprehensive metabolic panel (CMP), also called a comprehensive chemistry panel, is a common blood test that CLL patients should receive. It tests 14 chemicals to evaluate liver and kidney health, blood sugar levels, the acid and base balance of the blood, and the fluid/electrolyte balance.

The information gained from the test may influence treatment decisions for CLL patients. For example, suppose the test results indicate that you have poor kidney health. In that case, this may impact your ability to take the CLL treatment venetoclax (Venclexta, AbbVie) because it puts you at a higher risk for a side effect called tumor lysis syndrome (TLS).

What Does a Comprehensive Metabolic Panel Test For?

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Glucose: Measures the amount of sugar in the blood and is used to diagnose diabetes.
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Electrolytes: The test checks for carbon dioxide, sodium, potassium, and chloride levels, which are essential minerals for maintaining proper fluid balance and nerve function.
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Kidney function: Measures the levels of waste products removed from the blood by the kidneys, such as creatinine (Cr) and blood urea nitrogen (BUN). These values help assess the health of your kidneys. If levels are high, this can indicate kidney damage or disease.
\n
\n
Liver function: Measures levels of liver enzymes such as ALP (alkaline phosphatase), ALT (alanine transaminase), and AST (aspartate aminotransferase). It also checks levels of bilirubin (a waste product produced by the liver) that can indicate liver disease.
\n
\n
Total protein: Analyzes levels of albumin and globulins in the blood. This can be used to assess liver and kidney function.
\n
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Calcium: Checks calcium levels, which are important for bone health and nerve function. Abnormal levels can indicate various conditions, such as kidney disease or hyperparathyroidism.
\n

How Do I Prepare for a Comprehensive Metabolic Panel?

Patients are usually asked to fast for 10-12 hours to prepare for the test. If you have any concerns about fasting, please speak with your doctor. You may also be asked to avoid certain medications or supplements that could interfere with the test's results.

What are the Steps of a Comprehensive Metabolic Panel?

The entire test takes less than 5 minutes to complete. A trained phlebotomist or healthcare professional will perform the blood draw. They will find a vein in one of your arms, clean the area with an antiseptic solution, and then insert a small needle—this might cause a brief sting. A small amount of blood will be collected into a test tube. After removing the needle, they will apply a bandage and pressure to the site.

Your blood samples will be sent to a lab for analysis, and you can expect to receive the results within 1-2 days. If you have any questions or concerns about the test, please contact your CLL specialist.

Track Your CLL Labs

Are you interested in keeping track of your CLL labs in one place and understanding what is considered normal or abnormal? Click on the link below to access your free account!

Track My CLL Labs

To learn about other tests you may need as a person with CLL, click here.

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Summary

In summary, a comprehensive metabolic panel (CMP) is a blood test that can benefit people with CLL. It tests for 14 chemicals to assess the health of the liver and kidneys, blood sugar levels, and fluid/electrolyte balance. The results from this test may impact your CLL treatment options. For example, if the test results indicate you have poor kidney health, you may be advised to avoid venetoclax as it increases your risk for a side effect called tumor lysis syndrome.

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Sources:

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Comprehensive Metabolic Panel (CMP)
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What is a Comprehensive Metabolic Panel (CMP)?
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Chronic Lymphocytic Leukemia (CLL) Guidelines
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Although chemotherapy is no longer the standard of care for CLL/SLL, learn about certain cases in which it may still be used for people with this cancer.

Is Chemotherapy Used for CLL?

As of the mid-2000s, chemotherapy (a form of cancer treatment that kills quickly dividing cells) is now rarely used to treat chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL). This is because modern targeted therapies such as BTK inhibitors and venetoclax have proven to be far superior in their effectiveness over chemotherapy for these patients and have fewer treatment-related side effects.

It is important to know that this field is advancing and changing constantly, and general oncologists might not always know the latest recommendations for your specific type of cancer. Please speak with a CLL specialist to help evaluate your treatment options. Need help finding one?

Click here to review HealthTree’s specialist directory

However, some people with CLL/SLL may have received chemotherapy regimens even since targeted therapies have become the new standard of care. Although rarely used, this article will discuss some of the cases in which chemotherapy regimens are still considered to treat CLL/SLL.

When Chemotherapy May Still Be Considered to Treat CLL/SLL

Cases in which chemotherapy may be recommended to treat CLL/SLL include:

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You are unable to be treated with targeted therapies and are not eligible to join clinical trials
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A quick response to treatment is needed
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Other treatments you tried were not successful
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You receive chemotherapy as a pre-treatment for another therapy like CAR T-cells or a stem cell transplant
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People with CLL who have experienced Richter transformation may have been treated with chemotherapy regimens in the past. Specialists are finding that chemotherapy is not an effective option for these patients. To learn more about Richter transformation and improved treatment options, click here
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Limited resources: Certain parts of the world may not have access to targeted therapies for CLL/SLL, and chemotherapy is still used. Traveling to a location that administers targeted therapies for CLL may help overcome this obstacle
\n

What Types of Chemotherapy are Used for CLL/SLL?

Types of chemotherapy combinations for people with CLL/SLL may include:

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Fludarabine, cyclophosphamide, and rituximab (FCR)
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Bendamustine and rituximab (BR)
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These treatments are administered intravenously (via an IV). A timeline example for an infusion would be:

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Bendamustine (chemotherapy) is administered intravenously over 10 minutes on the first and second days of each month for up to 6 months
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Rituximab (monoclonal antibody given alongside the chemotherapy) is administered intravenously over 3-4 hours on the first day of each month for 6 months
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Common side effects may include low blood counts, hair loss, mouth sores, loss of appetite, nausea, and vomiting. Ask your doctor about ways to manage side effects. You can also click here to learn about side effect management strategies recommended by other patients.

One thing to note is that people with CLL/SLL who have a del(17p)/TP53 mutation do not have favorable outcomes with chemotherapy. If you have this type of CLL, ask your doctor about clinical trials you may be eligible to join. You can also click here to learn about other treatment options available if you are not eligible for standard CLL care.

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Conclusion

In summary, although chemotherapy is now rarely used for people with CLL/SLL, certain circumstances may place it as a treatment option. Some of these cases include if standard CLL therapies have not worked, if you are preparing to receive CAR T-cell therapy, or if you are preparing for a stem cell transplant. Talk with your CLL specialist to identify the best treatment for you.

Stay updated with the latest news on research and treatment of CLL with HealthTree for CLL. Subscribe to our CLL Newsletter today!

CLL Newsletter

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Sources:

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Chemotherapy for Chronic Lymphocytic Leukemia (CLL)
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Practical Management of Richter Transformation in 2023 and Beyond
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Typical Treatment of Chronic Lymphocytic Leukemia
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AbbVie News Center
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Bendeka (Bendamustine) Prescribing Information
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Rituxan (Rituximab) Prescribing Information
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Up to 10% of people with chronic lymphocytic leukemia (CLL)/ small lymphocytic lymphoma (SLL) develop Richter transformation (RT) during the cancer course.

In Richter transformation, CLL/SLL cells morph into a more aggressive form of lymphoma, often diffuse large B-cell lymphoma (DLBCL). CLL/SLL cells can undergo this transformation before or after treatment.

Richter transformation is named after Maurice Richter, the American pathologist who first described it in 1928 after seeing a CLL patient who suddenly showed a swelling of the lymph nodes.

Learn about the symptoms and treatment options for people who have experienced Richter transformation.

What Causes Richter Transformation?

The cause of CLL undergoing Richter transformation is not yet well understood. Possible links have been tied to reactivation of the Epstein-Barr virus. It is one of the most common human viruses, it can cause diseases like mononucleosis, and after the infection, it stays hidden (inactive or latent) in your body and can reactivate later in life.

Another study found links between Richter transformation and the deletion of the MGA gene, suggesting therapies be used to target that gene. Click here to learn more.

What are the Signs/Symptoms of Richter Transformation?

Signs and symptoms to look for that may indicate Richter transformation include:

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Fast-growing lymph nodes
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Drenching night sweats
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New fevers
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A persistent high level of lactate dehydrogenase (LDH)
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Reactivated Epstein-Barr virus
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Unintentional weight loss
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What Tests are Needed to Confirm Richter Transformation?

The common tests you’ll need to undergo to confirm Richter transformation include:

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A blood test to measure the levels of lactate dehydrogenase (LDH)
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A blood test to detect to detect if you have any Epstein-Barr virus antigens or antibodies
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A PET/CT scan to find enlarged lymph nodes, followed by a lymph node biopsy to examine the cells
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What are the Treatments for Richter Transformation?

There is not yet a standard therapy for Richter transformation (RT). Because CLL often transforms into DLBCL during RT, lymphoma treatments have been used in the past.

Specialists have found that chemotherapy regimens like R-CHOP are not effective long-term for these patients as they rarely achieve a complete remission and for those that do, the remission period lasts an average of 10 months.

Other options like stem cell transplant, however, have shown improved outcomes for RT patients.

Stem Cell Transplant for Richter Transformation

A study demonstrated the following for how well two forms of stem cell transplants (SCT) worked for 170 RT patients who had previously been treated with CLL therapies and had high-risk features:

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Autologous-SCT (the patient's own stem cells were collected and then re-infused)
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  At the check-in point of 3 years after treatment, 57% of RT patients were still alive
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Allogeneic-SCT (donor stem cells are infused into the patient)
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  At the check-in point of 3 years after treatment, 52% of RT patients were still alive
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Autologous-SCT may be preferred to allogeneic-SCT for patients with Richter transformation due to its slight effectiveness advantage and because it avoids graft-vs-host disease, a serious complication where donor stem cells attack the recipient's body.

CAR T-cell Therapy for Richter Transformation

CAR T-cell therapy liso-cel (Breyanzi, BMS) was evaluated to treat Richter transformation. CAR T-cell therapy enhances a patient’s T-cells to more effectively kill cancer cells.

Because liso-cel is still very new, there is limited experience in treating patients with RT with CAR T-cells. This study found that after 12 months from treatment with liso-cel:

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54% of 30 patients were still in remission
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67% of 30 patients were still alive
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Bispecific Antibodies for Richter Transformation

Bispecific antibodies are also being investigated for RT. They work by attaching to T-cells and cancer cells, bringing the T-cell close enough to kill the cancer cell.

Early data from a study evaluating the bispecific antibody epcoritamab (Epkinly, Genmab/AbbVie) for RT patients showed after treatment, 50% of patients achieved a complete reduction of cancer signs/symptoms. More time is needed to evaluate how effective bispecific antibodies may be in the long run for Richter transformation.

Additional resources:

For additional insights click here to learn about how receiving or not receiving CLL targeted therapies prior to Richter transformation can influence which treatment you should choose next.

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Conclusion

In summary, although Richter transformation does not yet have a standard treatment, chemotherapy regimens are not recommended. Several therapies are being investigated, such as stem cell transplant, CAR T-cell therapy, and bispecific antibodies. We need more information over a longer time to understand how well these treatments work.

Accelerate the discovery of new treatment options by creating an account at HealthTree Cure Hub, an innovative tool that powers life-saving research!

If you are interested in finding a clinical trial, locating a specialist, or staying on top of your health by having all your labs in one place, you can create a free HealthTree Cure Hub account by clicking the button below!

CREATE MY FREE ACCOUNT

Sources:

","language":"EN","metaDescription":"Learn about the symptoms and treatment options for CLL/SLL patients who have experienced Richter transformation.","metaTitle":"Richter Transformation: Symptoms & Treatments","publishedAt":{"_type":"Date","value":"Tue Sep 24 2024 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"Richter transformation cll, richter transformation cll treatment, richter syndrome cll, richter conversion cll, cll richter’s transformation prognosis, cll richter’s transformation symptoms, cll richter transformation diagnosis, richter transformation dlbcl, richter transformation treatment, richter transformation life expectancy, richter transformation lymphoma, sll richter transformation, healthtree ","slug":"cll-richter-transformation-symptoms-treatments","status":"ACTIVE","title":"Richter Transformation: Symptoms, Tests, & Treatments","updatedAt":{"_type":"Date","value":"Sun Nov 10 2024 16:13:28 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:03 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":"myeloma-basics","sectionConfig":{"news":{"description":"Our Core Education articles help you understand your cancer so you are equipped to find a good care team, ask appropriate questions, and become your own best advocate.","metaDescription":"Learn 101 Education to help you know more about your cancer, what tests and treatments are available to you, and more.","metaTitle":"Core Education - HealthTree Foundation","order":3,"tileOrder":3,"type":"LARGE_TILE"}},"sections":["NEWS"],"slug":"core-education","status":"ACTIVE","title":"Core Education","updatedAt":{"_type":"Date","value":"Fri Apr 12 2024 20:21:23 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"snapshot":{"exists":true,"id":"MB3xw38fuKkx0LdszsrL","ref":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/h0LYldmdpIfMmAKTyEdI"},"snapshot":{"exists":true,"id":"h0LYldmdpIfMmAKTyEdI","ref":{"_type":"DocumentReference","path":"apps/community/articles/h0LYldmdpIfMmAKTyEdI"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NRcFf0ATixvpHmsyX2JM"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"createdAt":{"_type":"Date","value":"Fri Jul 12 2024 23:02:39 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/cll"},"diseases":[{"_type":"DocumentReference","path":"diseases/cll"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fmyeloma%20genetics%20module_6af0ac5c-c624-4782-b37f-0fce842c59f7.png?alt=media","htmlContent":"

Chronic lymphocytic leukemia is a type of blood cancer characterized by continuous mutations that lead to an overproduction of cancerous B-cells, a type of white blood cell responsible for making infection-fighting proteins called antibodies.

\n\n

When trying to understand how CLL happens, it’s common to ask if the genetic mutations that led to your CLL diagnosis could also affect your closest relatives in the future. It is well established that genes carry our genetic material, which determines features like our eye color, hair texture, and, unfortunately, some diseases.

\n\n

To answer the question of “Is CLL an inheritable cancer?” we had the privilege to feature doctor Lydia Scarfò, MD, from the Università Vita-Salute San Raffaele in Milano, Italy, at HealthTree University, where she talked about the chances of inheriting CLL if a family member is diagnosed with it.

\n\n

Dr. Scarfò mentioned that first-degree relatives, such as parents, siblings or children, of patients diagnosed with CLL have a higher risk of developing CLL in the future. However, it’s important to consider that CLL is a rare disease. Even for those with a higher genetic risk, the chances of developing CLL are slim.

\n\n

$\"\"$

\n\n

Are There Tests to Determine if My Family Members Could Get CLL?

\n\n

Doctor Scarfò stated that if parents, siblings, or children of a CLL patient have no signs or symptoms of CLL, there is no clear advantage to getting tested early. This is because CLL patients are only treated if signs and symptoms of CLL are present.

\n\n

However, there is a test that could analyze the cells from the bone marrow or blood to look for specific genetic abnormalities like:

\n\n

missing chromosomes, specifically 13, 11, and 17
an extra copy of chromosome 12
a swapping of the DNA between chromosomes 12 and 14

\n\n

There is no evidence that genetic testing for CLL is beneficial for people who have no signs of the condition. However, genetic testing can be useful during the diagnostic process if a doctor suspects CLL.

\n\n

It is important to acknowledge that research is still needed to demonstrate the risk of inheriting CLL. It is still unclear which genetic changes may be responsible for increasing the risk.

\n\n

You can help increase researchers' and doctors’ understanding of CLL by creating a free account at HealthTree Cure Hub and participating in surveys that power life-saving research. Become a Cure Contributor today!

\n\n

CREATE MY FREE ACCOUNT

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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.

!AD!

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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.\"
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!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!\"
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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

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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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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.

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!AD!!AD!

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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:

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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.

$\"\"$

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

\n
Spread Awareness: Share HealthTree’s resources with your local community to empower others with the knowledge and tools they need.
\n
\n
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.
\n
\n
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.
\n
\n
Connect with Others: Join outreach efforts to support Black, Hispanic, and rural patients who often face barriers in accessing adequate care and resources.
\n
\n
Represent HealthTree: Attend local health events as an ambassador, helping to build awareness and create impactful partnerships.
\n

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.

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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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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.

\n\n

What Obstacles Do Patients Face to Accessing Healthcare?

\n\n

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

\n\n

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.

\n\n

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.

\n\n

How Can Patient Navigators Help You Overcome These Barriers?

\n\n

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

\n\n

Examples of services a patient navigator can assist with include:

\n\n

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

\n\n

Audience Q&A

\n\n

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

\n\n

[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?

\n\n

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

\n\n

Conclusion

\n\n

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.

\n\n

Become a Cure Contributor by Joining HealthTree Cure Hub!

\n\n

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!

\n\n

CREATE YOUR FREE HEALTHTREE CURE HUB ACCOUNT

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On June 25th, as part of HealthTree’s CLL Webinar Program, CLL specialist Kerry Rogers, M.D., from OSUCCC-James shared insight about the treatment options available to CLL patients whose disease was not responsive to venetoclax and covalent BTK inhibitors. Watch the event's recording below or read the summary.

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What is Relapsed/Refractory CLL?

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Relapse refers to CLL returning after the patient finishes treatment and experiences a period of remission over six months. Remission means the disease signs and symptoms were either partially or fully reduced. CLL patients usually experience up to several years of remission after taking the fixed-duration treatment combination of venetoclax (Venclexta, AbbVie) and obinutuzumab (Gazyva, Genentech).

\n\n

Refractory means that CLL became resistant to treatment or came back within six months after finishing therapy. Refractory CLL is observed in patients who take covalent BTK inhibitors continuously over several years, such as ibrutinib (Imbruvica, Janssen Biotech), acalabrutinib (Calquence, AstraZeneca), and zanubrutinib (Brukinsa, BeiGene). CLL patients may also become refractory to venetoclax.

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As of 2024, CLL is not considered to be curable. Relapsed and refractory CLL are the expected evolution of the disease. CLL needs long-term management with multiple lines of therapy during a patient’s life.

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CLL Treatment Options After Venetoclax and Covalent BTK Inhibitors

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If CLL patients cannot take venetoclax or covalent BTK inhibitors either from intolerance to side effects or because CLL cells have become refractory to the medicines, other treatment options are needed to continue limiting the progression of the disease. Dr. Rogers mentioned several new medicines for this patient group. These include:

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FDA-approved relapsed/refractory CLL treatment options \n\n\t
- Pirtobrutinib (Jaypirca, Eli Lilly): A non-covalent BTK inhibitor that binds to the CLL cells in a different way than covalent BTK inhibitors, allowing the medicine to inhibit CLL progression despite prior resistance to covalent BTK inhibitors.
- Liso-cel (Breyanzi, BMS): A CAR T-cell therapy that works by re-engineering a patient’s T-cells to more effectively kill CLL cells.
- Allogeneic stem cell transplant: The patient receives an infusion of donor stem cells (cells capable of forming all other types of blood cells). Because of its side effects, this treatment is often considered a last resort for CLL patients.
\n\t
Relapsed/refractory CLL treatment options in clinical trials \n\t
- BTK degraders: They target and remove the BTK protein on CLL cells, allowing for treatment effectiveness despite prior BTK inhibitor intolerance.
- Sonrotoclax (BeiGene): A second-generation BCL-2 inhibitor.
- Bispecific antibodies: Immunotherapy that brings cancer-killing T-cells near CLL cells to kill them.
\n\t

\n\n

Audience Q&A

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

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[Timestamp 46:25] If I’ve previously been treated with venetoclax and ibrutinib, should I consider a clinical trial first or choose a treatment that is already FDA-approved, like CAR T-cell therapy or pirtobrutininb?
[Timestamp 51:50] Are patients pre-educated about side effect management strategies before they receive treatment to help reduce fear?
[Timestamp 55:42] How do you manage the side effects seen with pirtobrutinib?

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To listen to these questions’ answers in the event’s recording, please click the timestamp links.

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Join the HealthTree for CLL Newsletter to Learn More!

\n\n

We invite you to click the button below to subscribe to our newsletter and stay updated on the latest advancements in chronic lymphocytic leukemia and register for our next webinar!

\n\n

JOIN THE HEALTHTREE FOR CLL NEWSLETTER

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On June 18th, as part of HealthTree’s CLL Webinar Program, CLL specialist Dr. Alvaro Alencar from the University of Miami Sylvester Comprehensive Cancer Center shared insight about the differences between fixed-duration and continuous-duration CLL medicines.

\n\n

Fixed-duration therapies are those that you take for a specific period, usually a few weeks or months, following a defined schedule. Once that period is complete, ideally, you reach a point where you can maintain your health safely without ongoing treatment. An example of this type of medication would be antibiotics.

\n\n

Continuous-duration medications are those received regularly for a long period or even indefinitely. The goal is to keep your condition under control and hopefully prevent it from worsening. For example, high blood pressure treatment.

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Similarly, for CLL, we can find both therapeutic strategies, and it’s important to understand their pros and cons to understand which one might be the best fit for you. Watch the event's recording below or read the summary.

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!AD!

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History of CLL Treatments

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Before the early 2000s, only chemoimmunotherapy was used to treat chronic lymphocytic leukemia (CLL). Over time, targeted therapies like the BTK inhibitor ibrutinib (Imbruvica) started being used to treat high-risk CLL cases like patients with 17p deletion. As specialists saw that these newer targeted therapies were more effective and had fewer side effects than chemoimmunotherapy, they started being used beyond high-risk CLL, expanding to all CLL types. Now, chemotherapy is no longer used to treat CLL.

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When To Start CLL Treatment?

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Dr. Alencar stated that if CLL is not causing trouble, treatment does not need to start (click here to learn about the requirements to start therapy). Instead, the patient and doctor monitor the disease until it reaches a point requiring treatment. This ‘Watch and Wait’ period has not been found to negatively impact CLL patients’ length and health-related quality of life.

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Pros and Cons of Fixed-Duration CLL Therapies

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The standard fixed-duration CLL therapy is venetoclax (Venclexta, AbbVie) in combination with obinutuzumab (Gazyva, Genentech). The treatment is so potent at killing CLL that a cautious ramp-up period during the first month is required.

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Venetoclax is a daily pill. Obinutuzumab is an infusion administered at a medical center at several intervals over the course of six months. Although more work is required in the beginning, at the end of the one-year treatment, most patients enjoy a multi-year therapy break before needing to start another CLL treatment.

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Pros and Cons of Continuous-Duration CLL Therapies

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Continuous-duration therapy with BTK inhibitors involves daily pills taken indefinitely until treatment intolerance. BTK inhibitors help limit CLL cells from multiplying further, keeping the disease at bay as long as the patient takes the pill. Over time, CLL cells may decrease.

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However, the quick killing seen with venetoclax is not seen with BTK inhibitors. Although the pill is easy to take and requires fewer lab check-ins than venetoclax, the downside to BTK inhibitors is that the medicine is taken long-term, thus exposing the patient to potential long-term side effects.

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BTK inhibitors include acalabrutinib (Calquence, AstraZeneca), zanubrutinib (Brukinsa, BeiGene), and ibrutinib (Imbruvica, Janssen Biotech). Acalabrutinib and zanubrutinib are second-generation BTK inhibitors with fewer heart-related side effects than ibrutinib.

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Click here to learn about the average time CLL medicines work based on your CLL type.

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What Factors Influence the Choice of My CLL Treatment?

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Factors such as CLL disease location (more in the lymph nodes vs. more in the blood), a patient’s ability to travel to a treatment center, comorbidities, insurance approval, genetic markers of the disease, and personal preferences all play a role in customizing a patient’s CLL treatment plan.

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Dr. Alencar stated that there is no right answer. Patients starting in one class of therapy, like BTK inhibitors, eventually will likely need to switch to a different class, like venetoclax, years later and vice versa.

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Future Directions of CLL Therapies

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Dr. Alencar shared that the defined lines of fixed and continuous-duration CLL therapies are becoming more blurred as new treatment strategies combine the various medicine classes for different periods, hoping to improve effectiveness. Examples include doublet and triplet combination clinical trials using BTK inhibitors, venetoclax, and obinutuzumab.

\n\n

In conclusion, the fixed-duration CLL therapy combination of venetoclax and obinutuzumab offers a highly effective treatment regimen that allows many patients a therapy break, although the initial treatment ramp-up is intensive. In contrast, continuous-duration therapies using BTK inhibitors require indefinite daily administration but present fewer immediate side effects, though long-term usage raises concerns about chronic side effects. As the landscape of CLL therapies continues to evolve, integrating new treatment strategies has the potential to improve patient outcomes.

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Audience Q&A

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

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Is there a certain point at which CLL cells build up resistance to BTK inhibitors? (Timestamp 39:52)

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Is CAR T-cell therapy considered a fixed-duration treatment? (Timestamp 43:29)

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Is obinutuzumab considered a fixed-duration therapy? (Timestamp 47:22)

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To listen to these questions' answers, watch the event’s recording by clicking here.

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!AD!

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Join the HealthTree for CLL Newsletter to Learn More!

\n\n

We invite you to click the button below to subscribe to our newsletter and stay updated on the latest advancements in chronic lymphocytic leukemia and sign up for our next webinar!

\n\n

JOIN THE HEALTHTREE FOR CLL NEWSLETTER

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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.

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Sources:

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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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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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CAR T-cell Therapy is Continuously Being Improved

CAR T-cell is groundbreaking for treating cancer because it uses modified healthy immune cells to eliminate cancer cells. Although its use has good responses, the downside is that side effects like cytokine release syndrome, nervous system side effects, and depletion of CAR-T cells (running out of cells), demand further treatment advancements to create improved CAR T-cells that bind only to cancer cells and last longer in the body, minimizing as much as possible the side effects.

Thanks to research, there is more than one CAR-T cell option, depending on what they were designed to do and the proteins they link to. That’s why CAR T-cell therapy is currently one of the most active areas in research, always looking for improvement.

New Clinical Trial Testing Armored CAR T-Cells

A new Phase I clinical trial is now recruiting patients to test a genetically engineered type of CAR T-cell therapy, known as EGFRt/19-28z/IL-12 CAR T-cells, for people with blood cancers that express CD19 and whose cancer came back after treatment (relapsed) or didn’t respond to other therapies (refractory).

What are Armored CAR T-cells?

These armored CAR T-cells target the CD19 protein found on lymphoma cells, and they also have a protein called interleukin-2 (IL-2), which works as an immune system booster (cytokine). Combined, they improve the immune system against cancer and enhance the T-cells' ability to survive and function for longer.

What is the Purpose of the Trial?

The trial seeks to determine the safety, side effects, and best dose of the armored CAR T-cells. The investigators want to find out if, when adding the gene for IL-12, the modified T-cells may fight cancer cells more effectively and improve the overall immune response.

Who Can Join the Trial?

The trial NCT06343376 includes people who previously received CAR T-cell therapy targeting CD19 but need further treatment. This trial includes patients with the following blood cancers that are CD19 positive:

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Diffuse large B-cell lymphoma (DLBCL)
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High-grade B-cell lymphoma (HGBL)
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Chronic lymphocytic leukemia (CLL)
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Mantle cell lymphoma
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Follicular lymphoma
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Visit the trial page for more information on eligibility criteria.

What is the Clinical Trial Plan?

All the patients who participate in this trial will first undergo a procedure called leukapheresis, where their T-cells are collected. Then, depending on the group they are assigned to, they will receive either:

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EGFRt/19-28z/IL-12 armored CAR T-cells alone, or
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A combination of chemotherapy (cyclophosphamide and fludarabine) followed by the armored CAR T-cells.
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Throughout the trial, various tests will monitor the participants’ health and will consist of heart ultrasound, imaging (PET or CT scans), and bone marrow biopsies, to observe their response to the treatment.

After treatment, patients will be closely monitored for side effects and signs of cancer reappearance, with follow-ups occurring over several months and up to 5 years or for as long as each patient agrees to, to assess long-term safety and effectiveness.

Why is This Clinical Trial Important?

This trial represents an exciting new step in CAR T-cell therapy, potentially offering a more effective treatment option for blood cancer patients. By enhancing T-cell function through the addition of IL-12, researchers hope to improve outcomes for patients who have limited options left. If you want to learn more or participate in this trial, it is important to discuss the risks and benefits with your healthcare provider.

If you’re interested in looking for more clinical trials, access HealthTree’s Clinical Trial Finder for free!

Sources:

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Pharmaceutical company BeiGene announced on Monday, August 26th, that the FDA granted Fast Track Designation to the BTK degrader called BGB-16673 for people with relapsed/refractory CLL/SLL who have received at least two prior lines of therapy.

FDA Fast Track Designation is a program that accelerates the development and review of medicines intended to treat serious conditions and address unmet medical needs.

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“When disease progression for patients on BTK inhibitors occurs, there is a need for BTK-targeting agents with a different mode of action given the centrality of this pathway in CLL/SLL. BTK-protein degradation with our BTK CDAC (BGB-16673) may address this unmet need. The FDA’s Fast Track Designation supports our goal of efficiently developing BGB-16673 for these patients, the first investigational drug from our CDAC platform. We believe BGB-16673 strengthens our hematology leadership and complements BRUKINSA (zanubrutinib), the backbone for our investigational hematology pipeline. BGB-16673 is the most advanced BTK degrader in the clinic and is well-suited to become an important therapy for patients progressing after BTKi who have limited options.” -Mehrdad Mobasher, M.D., M.P.H., BeiGene Chief Medical Officer, Hematology.
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Learn about how this new treatment option may help if you have already taken and are unable to re-take BTK inhibitors and venetoclax.

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What are BTK Degraders?

BTK degraders like BGB-16673 are medicines taken as a pill by mouth indefinitely. They bind to and eliminate the BTK protein, helping stop the replication of CLL cells. Removing the BTK protein helps overcome CLL resistance previously caused by BTK inhibitors. Click here to learn more about BTK degraders.

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

Relapsed/refractory CLL refers to cancer that came back after or stopped responding to prior therapies. BGB-16673 is a treatment option for those who are no longer able to take BTK inhibitors or venetoclax (Venclexta, AbbVie).

Although the CaDAnCe-101 study is in its early stages with follow-up data at only 4.6 months, findings from the study showed the following for how well the BTK degrader BGB-16673 helped people with relapsed/refractory CLL/SLL:

Out of the 43 people who took BGB-16673, on average, 72% had reduced signs and symptoms of CLL/SLL despite many of these individuals having high-risk disease features like del(17p), unmutated IGHV, and complex karyotype.
Common side effects included mild-to-moderate fatigue, bruising, anemia (decreased red blood cells), and diarrhea. Healthcare team members can provide supportive measures to reduce the impact of side effects. Click here to learn about how to manage the side effects of CLL therapies.

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How Can I Receive BGB-16673?

The clinical trial administering BGB-16673 is still actively recruiting people with CLL/SLL who would like to join. Click here to review your eligibility to join the study. Click here to read answers to common questions about CLL clinical trials.

Conclusion

In summary, BGB-16673 is a treatment that has been granted FDA Fast Track Designation for people with relapsed/refractory CLL/SLL. This means that the medicine’s review process to achieve FDA approval is being prioritized. Early data shows that it helps most patients achieve reduced signs and symptoms of the disease despite high-risk CLL features and prior resistance to BTK inhibitors. Continued data from the CaDAnCe-101 study will show how effective BGB-16673 may be in the long term.

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Sources:

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Sonrotoclax + Zanubrutinib: A Rising Treatment Approach

BTK with BCL-2 inhibitor combinations are gaining traction in treating chronic lymphocytic leukemia (CLL) due to their complementary mechanisms, which enhance therapy effectiveness.

One promising combination being studied pairs the next-generation BTK inhibitor zanubrutinib with the next-generation BCL-2 inhibitor sonrotoclax. This duo has shown improved effectiveness and fewer side effects compared to its first-generation counterparts, ibrutinib and venetoclax.

A recent clinical trial reviewed the outcomes of sonrotoclax at two different doses (160 mg and 320 mg per day) when combined with zanubrutinib. The findings, presented at the ASH conference by Jacob D. Soumerai, MD, of Massachusetts General Hospital Cancer Center and Harvard Medical School, shed light on the best dosing strategy.

The trial focused on patients receiving this combination as their first treatment for CLL/SLL. Participants continued treatment until the cancer progressed, side effects outweighed the benefits, or they chose to discontinue after 22 months.

Comparing Sonrotoclax Doses

Remission Results

Among the 108 evaluable patients treated with zanubrutinib and sonrotoclax, 100% experienced a reduction in cancer cells.

Complete response:\n
- 160 mg sonrotoclax group: 40% of patients
- 320 mg sonrotoclax group: 42% of patients
- Median time to achieve a complete response: 8.4 months
- A complete response means CLL was not detected, and a patient’s spleen and lymph nodes were not enlarged
\n

Minimal Residual Disease (MRD) Results

Minimal residual disease (MRD) testing detects remaining cancer cells with high sensitivity. In this trial, MRD was tested using flow cytometry at a uMRD4 level (fewer than 1 CLL cell per 10,000 white blood cells) using a blood sample.

Achieving undetectable minimal residual disease (uMRD) is significant because it may predict a longer period in remission if treatment stops.

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

	Zanubrutinib + 160 mg sonrotoclax group	Zanubrutinib + 320 mg sonrotoclax group
Percentage of patients who achieved uMRD4 by week 24 of treatment	59%	78%
Percentage of patients who achieved uMRD4 by week 48 of treatment	82%	91%
Median time to achieve uMRD4	9.7 months	8.5 months

Another important finding was that at the median follow-up of 19.4 months since starting treatment, no patients’ cancer had progressed in the 320 mg group, and only 1 patient’s cancer had progressed in the 160 mg group.

Side Effect Findings

The most common side effects were low neutrophils (neutropenia), bruising, contracting COVID-19 due to patients’ weakened immune systems, and diarrhea. Side effects were considered manageable with supportive therapies, dose adjustments, and temporary treatment pauses.

A significant finding was the absence of tumor lysis syndrome (TLS), despite 34% of patients being at high risk. Unlike the rare TLS cases seen with venetoclax, no TLS cases occurred with sonrotoclax, further highlighting its advantages.

Summary

The combination of zanubrutinib with a daily 320 mg dose of sonrotoclax showed strong treatment results:

All individuals saw a decrease in cancer cells
42% of patients achieved a complete response
91% of individuals achieved undetectable minimal residual disease (uMRD4) after 48 weeks
At the median follow-up of 19.4 months after starting treatment, no patients had experienced cancer progression

These outcomes were better than those seen with the 160 mg dose of sonrotoclax. Based on the promising findings, researchers plan to continue evaluating sonrotoclax with zanubrutinib as a first treatment for people with CLL/SLL in phase 3 of the ongoing CELESTIAL-TNCLL trial. We look forward to seeing how these results may shape the future of CLL care.

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Continue Reading CLL Treatment Advancements

Sources:

Finding effective treatment options for people living with relapsed or refractory chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) or Richter transformation (a rare but aggressive complication of CLL) may be difficult. Many patients facing these diagnoses have already gone through several lines of therapy, highlighting the need for additional options.

A recent clinical trial explored the combination of two oral medications—venetoclax and duvelisib—to determine their safety and effectiveness in treating these conditions.

The Advantages of Oral Treatments

Venetoclax (Venclexta), when used with rituximab (Rituxan), is an effective treatment for CLL but requires two years of therapy, including six months of rituximab intravenous infusions. Evaluating additional oral medications to pair with venetoclax could help improve a patient’s quality of life, as it is more convenient than an IV treatment.

Duvelisib (Copiktra) is an oral medication for patients with relapsed or refractory CLL after two prior treatments. Although it has not been pulled from FDA approval as its side effects are clearly listed in the drug's warnings, an advisory committee to the FDA does not recommend its use for people with CLL due to its high risk profile. The reason for evaluating it in the clinical trial below, combined with venetoclax, came from the idea that the combination may be effective enough for the benefits to outweigh the risks.

Discussing new treatment options with your healthcare team is essential. Clinical trials like this one help expand treatment possibilities and improve outcomes for patients. You can stay informed with HealthTree’s Clinical Trial Finder and use the different filters to discover personalized options.

If you are interested in additional relapsed/refractory treatment options for CLL/SLL, click here.

A Clinical Trial with an All-Oral Combination

This phase 2 clinical trial included 38 patients with relapsed or refractory CLL/SLL or Richter transformation who received at least one prior treatment or no venetoclax treatment in the past year.

The treatment plan involved:

Duvelisib at 25 mg twice daily for seven days
Adding venetoclax on day 8, beginning at a low dose and gradually increasing to 400 mg per day over several weeks
Patients with Richter transformation could start venetoclax at a higher dose and reach 400 mg in five days
After one year of treatment, patients with no detectable cancer cells in their bone marrow could stop therapy and restart if their disease returned
Those with detectable cancer cells continued venetoclax alone and had the option to stop later if they achieved complete remission

Were Venetoclax + Duvelisib Effective?

Relapsed/Refractory CLL Results

97% of CLL patients responded to treatment
After 12 months, 72% of patients continued to respond to treatment, with 44% achieving a complete remission
68% remained progression-free after three years

Richter Transformation Results

\n
30% of the patients with Richter transformation achieved a complete remission, including one who received a stem cell transplant and remained in remission for over two years.
\n

Progression-free survival rates were lower for high-risk patients with specific genetic mutations (47%) and those previously treated with BTK inhibitors (46%).

What Were the Side Effects of Venetoclax + Duvelisib?

The most common side effects were low blood cell counts, with 86% of patients having low white blood cell counts (neutropenia), and 58% of patients with low platelet counts (thrombocytopenia).
Other common side effects included diarrhea (63%), nausea (55%), liver enzyme changes, high blood pressure, and headaches.
Serious side effects included colitis (inflammation of the large intestine), tumor lysis syndrome (a condition where cancer cells break down too quickly), infections, and febrile neutropenia (fever caused by having low white blood cells).
Five patients had to discontinue because of the serious side effects that they were experiencing.

Conclusion

This study showed that an all-oral, time-limited treatment with venetoclax and duvelisib is effective for patients with relapsed or refractory CLL/SLL and Richter transformation, including those with high-risk disease. Side effects were common but considered manageable. These results support further research into this combination therapy for CLL/SLL and Richter transformation patients.

If you want to keep reading more articles like this one, you can bookmark the HealthTree News Page and browse the different article categories.

Keep Reading CLL News

Source:

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A Phase 2 Study of Duvelisib and Venetoclax in Patients with Relapsed or Refractory (R/R) Chronic Lymphocytic Leukemia (CLL) or Richter’s Syndrome (RS)
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For people with relapsed or refractory chronic lymphocytic leukemia (CLL), researchers are exploring whether taking pirtobrutinib (Jaypirca, Eli Lilly) and venetoclax (Venclexta, AbbVie) with or without rituximab (Rituxan, Genentech) for just two years can be an effective strategy. Learn more about this approach from a recent study below.

Why Combine Pirtobrutinib and Venetoclax?

Many of the latest clinical trials have focused on combining BTK and BCL-2 inhibitors because these drug classes enhance each other’s effectiveness. Unlike traditional covalent BTK inhibitors (cBTKi, like acalabrutinib), pirtobrutinib—a non-covalent BTK inhibitor—can overcome the resistance that develops with long-term cBTKi use.

While pirtobrutinib is currently FDA-approved as a continuous-duration treatment, evaluating its combination with venetoclax for a fixed duration is a new approach. A key limitation of pirtobrutinib alone is that its effectiveness typically wanes within two years, depending on prior treatments. However, pairing it with venetoclax for a set period may enhance its efficacy.

Pirtobrutinib and Venetoclax Phase 1 Outcomes

In a phase 1 study, 25 adults with relapsed/refractory CLL received either a combination of pirtobrutinib and venetoclax (PV) or pirtobrutinib, venetoclax, and rituximab (PVR) for a fixed duration of 25 cycles (approximately two years).

Achieving Remission

Among all patients treated with PV or PVR, 96% experienced a reduction in cancer cells following treatment, reflecting the overall response rate. Notably, 40% of these individuals achieved a complete response, meaning they had normal blood levels and no enlarged spleen or lymph nodes.

18 months after achieving a response, 93% of patients in the PV group and 80% of patients in the PVR group were still in remission (duration of response).

Minimal Residual Disease (MRD) Testing

The researchers also assessed minimal residual disease (MRD), a highly sensitive test that detects remaining cancer cells. Achieving undetectable minimal residual disease (uMRD) is significant because it predicts a longer duration of remission.

In this study, the sensitivity threshold was uMRD4, indicating fewer than 1 CLL cell per 10,000 white blood cells in a blood sample, as measured by clonoSEQ. Among both PV and PVR groups, results showed:

70.8% of patients achieved uMRD4 after 12 months
87.5% reached uMRD4 at some point during the trial

These early findings are promising, suggesting that pirtobrutinib and venetoclax, with or without rituximab, can induce deep responses. This is particularly noteworthy given that 68% of patients had previously been treated with covalent BTK inhibitors (cBTKis), the majority of whom had developed resistance.

Side Effects

While common side effects such as low white blood cells, diarrhea, fatigue, and nausea occurred, they were manageable—98% of patients were able to complete the full course of treatment. Additionally, researchers found no drug interactions between pirtobrutinib and venetoclax, confirming their safety when taken together.

Overall, these findings highlight the promising potential of pirtobrutinib and venetoclax, with or without rituximab, for patients with relapsed/refractory CLL, including those previously treated with a covalent BTK inhibitor.

Limitations and Future Research

While the study results are encouraging, the small number of patients makes it harder to compare different treatment options. More research is needed to see if the benefits last over time and whether some patients might do better with a shorter or longer treatment plan.

A larger phase 3 trial is now in progress to test this treatment in more patients. Researchers are also studying other combinations with pirtobrutinib, not just for patients whose CLL has returned or stopped responding to treatment but also for those receiving treatment for the first time. Examples include:

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Click the button below to keep reading news about chronic lymphocytic leukemia (CLL).

How Effective is CD19 CAR T-Cell Therapy for CLL/SLL After Five Years?

In collaboration with the University of Pennsylvania, Benjamin F. Frost, MD, of the Brigham and Women's Hospital, led research efforts to review the long-term data of two previous clinical trials. In these studies, 57 CLL/SLL patients had received just the CD19-directed CAR T-cell therapy or in combination with ibrutinib. CD19 is a surface protein found on CLL cells, and these CAR T-cells are specially designed to target it.

Unlike commercial CAR T-cell therapies like liso-cel (Breyanzi, BMS), the researchers created and produced the CAR T-cells in these trials.

Of these 57 patients, 31 achieved either a full or partial reduction of CLL cells (71% complete response and 29% partial) one year after the infusion. At the five-year mark since treatment, researchers found:

Progression-free survival (PFS)\n
- 57.1% of patients who received the CAR T-cell therapy alone remained progression-free—meaning the cancer cells had not grown or expanded.
- Patients who received CAR T-cell therapy with ibrutinib had an even better outcome, with 64.7% progression-free after 5 years.
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Overall survival rates were 78.6% for those who received CAR T-cell therapy alone and 70.6% for those who combined it with ibrutinib.

Another important fact from the study was that achieving a complete response within one year of CAR-T infusion significantly improved the odds of long-term remission and survival.

Managing Long-Term Side Effects

While CAR T-cell therapy has shown promising results, most patients experienced B-cell aplasia. In this condition, CAR T-cells target healthy B-cells, causing the body to produce fewer antibodies and increase the risk of infections. To manage this, most patients required monthly immunoglobulin infusions (IVIG).

Click here to learn more about the management strategies for CAR T-cell therapy's side effects.

Key Takeaways

If you remain progression-free one year after your CD19 CAR T-cell infusion, there’s a high likelihood that your CLL cells will stay low or controlled for over five years without additional treatment.
Achieving a complete response within one year is linked to better long-term outcomes, including improved PFS and overall survival.
Despite the initially poor prognosis of relapsed/refractory CLL patients, this study suggests that a subset of patients may achieve long-term remission or even be cured with CD19 CAR T-cell therapy.
Ongoing research with CAR T-cell therapies is looking to expand its benefits and long-term disease control to more patients in the future.

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Do you want to learn more about CLL treatments? Find answers in HealthTree’s CLL Therapy Guide below!

Access the Free CLL Therapy Guide

Source:

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Curing CLL: Long-Term Outcomes of Chronic Lymphocytic Leukemia Patients with at Least One Year of Response to CART-19 Therapy
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Clinical trials serve as the foundation for advancing cancer treatments, but they can sometimes exclude high-risk patients to ensure cleaner data and a greater likelihood of positive outcomes.

While this approach increases the chances of obtaining regulatory approvals, it leaves patients with high-risk chronic lymphocytic leukemia (CLL), such as those with the TP53 genetic mutation, with fewer options.

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Recognizing this gap, researchers are striving to address the needs of these patients, who historically face worse outcomes.

At the 2024 ASH conference, Matthew S. Davids, MD, MMSc, of Dana-Farber Cancer Institute, presented new insights into a study focusing on newly diagnosed high-risk CLL patients, particularly those with TP53 mutations.

The research evaluates the efficacy of a novel combination therapy designed to improve outcomes for this underserved group. Let’s delve into the key findings and what they mean for high-risk CLL patients and their caregivers.

Why High-Risk CLL Patients Are Often Excluded

Patients with TP53 mutations or 17p deletions—high-risk features in CLL—often have a more challenging disease to treat and don't respond as well to traditional therapies. As a result, they require alternative, more aggressive regimens.

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Including high-risk patients in clinical trials requires tailored designs, adequate control arms, and sometimes adjusted timelines or additional tests, making trials more complex and expensive. Measuring outcomes also becomes more challenging, as findings may only apply to a specific subgroup.

Due to these challenges, most clinical trials focus on standard-risk patients who require simpler treatments. While this helps maintain data integrity, it excludes high-risk patients whose prognosis is generally worse.

This exclusion highlights a critical unmet need for targeted research to improve treatment options for these patients.

A Promising New Combination Therapy

Dr. Davids led a study to evaluate the safety and effectiveness of a combination therapy that includes acalabrutinib, venetoclax, and obinutuzumab for patients with TP53 abnormalities. While acalabrutinib alone and the combination of venetoclax with obinutuzumab are both FDA-approved treatments for CLL, their use together in this specific triplet combination is not yet approved.

Results showed:

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High response rates: Among the high-risk cohort, 42% of patients achieved complete remission (CR), including significantly high rates of minimal residual disease (MRD) negativity.
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Long responses: Patients achieved durable remissions, with some showing extended progression-free survival (PFS) beyond four years.
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Manageable safety profile: Adverse events were consistent with expectations for these therapies and most commonly included fatigue, headaches, and low blood cell counts. Most patients experienced mild side effects that were considered manageable with appropriate monitoring and supportive care.
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What This Means for CLL Patients and Caregivers

These findings provide renewed hope for patients with high-risk CLL. The study demonstrates that even those with historically poor outcomes can achieve meaningful responses with targeted therapies.

Caregivers can play a crucial role in helping patients navigate these new options, from understanding potential side effects to coordinating follow-ups with healthcare providers.

Learn more about the caregiver role in CLL treatment below:

CLL Caregiver Role

A Call to Healthcare Providers

Healthcare providers treating high-risk CLL patients can draw on this study as a potential guide for managing these challenging cases. While the combination therapy is promising, patient selection, careful monitoring, and supportive care remain critical to optimizing outcomes.

Looking Ahead

The inclusion of high-risk patients in clinical research marks a step forward in ensuring more equitable treatment options. While challenges remain, studies like this one show that researchers are committed to addressing the unique needs of high-risk groups.

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For high-risk CLL patients and their caregivers, staying informed about emerging therapies is key. Consider discussing these findings with your CLL specialist to explore whether such options might be suitable for your treatment plan. Together, researchers, providers, patients, and caregivers can continue to push the boundaries of what’s possible in CLL care.

Continue reading more about the evolution and efficacy of CLL Treatment here: Treatment Advancement News

Source:

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Primary Endpoint Evaluation of a Multicenter, Phase 2 Study of Acalabrutinib, Venetoclax, Obinutuzumab (AVO) in a Population of Previously Untreated Patients with CLL Enriched for High-Risk Disease
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In a PeerView educational session at the 2024 American Society of Hematology (ASH) conference, CLL specialists discussed common questions and controversies clinicians have about treating chronic lymphocytic leukemia (CLL).

In this article, we’ll discuss portions of the session, including side-effects management strategies for CLL therapies and treatment options for patients who have stopped responding to treatment or who experienced a relapse after receiving two different therapies.

To read other segments from this session which cover considerations for your first CLL treatment and insights on combining BTK and BCL-2 inhibitors, click here.

Managing the Side Effects of BTK and BCL-2 Inhibitors

Most people with CLL/SLL do well with targeted therapies like BTK inhibitors, venetoclax, and obinutuzumab. However, these treatments can cause side effects.

To learn about how to manage the side effects caused by CLL treatments, click the button below to explore an educational guide for people with CLL/SLL and their care partners.

Managing CLL Treatment Side Effects Guide

Dr. Farrukh T. Awan from UT Southwestern shared additional insights about strategies to manage side effects associated with CLL therapies. Read them below.

Reducing the Risk of Bleeding from BTK Inhibitors

BTK inhibitors can increase the risk of bleeding and bruising. To minimize this risk, it is advised to stop anti-platelet and anticoagulant (blood thinners) medications, such as warfarin or apixaban, before starting BTK inhibitor treatment.

You will be closely monitored for signs of bleeding, particularly during the early stages of treatment. If you are scheduled for minor or major surgery, your doctor will likely advise pausing the BTK inhibitor three to seven days beforehand to further reduce bleeding risks.

Managing Heart-Related Effects from BTK Inhibitors

BTK inhibitors may increase patients' risks of developing heart conditions. To learn about the relationship between heart side effects and BTK inhibitors, click here.

Dr. Awan advised oncologists to work closely with a heart doctor (cardiologist) while patients are taking a BTK inhibitor, actively monitor blood pressure, and watch for signs and symptoms of heart arrhythmias.

Reducing the Risk of Side Effects from Venetoclax and Obinutuzumab

Dr. Awan stated that the risk of patients experiencing a rare side effect called tumor lysis syndrome (TLS) from venetoclax can be reduced if you receive the obinutuzumab infusions beforehand. Obinutuzumab may also cause TLS; however, if patients are pretreated with a BTK inhibitor, the risk can be reduced even further.

Infusion reactions can occur with obinutuzumab. Taking a BTK inhibitor before the obinutuzumab infusion can reduce the risk of experiencing a reaction.

Third-Line Treatment Options for Relapsed/Refractory CLL

If you have taken BTK inhibitors and BCL-2 inhibitors in the past and these therapies have stopped working, other treatment options available are listed below.

Pirtobrutinib

Dr. Bita Fakhri from Stanford University School of Medicine discussed that doctors may consider the non-covalent BTK inhibitor pirtobrutinib (Jaypirca, by Eli Lilly) for people with relapsed/refractory CLL/SLL.

Pirtobrutinib is FDA-approved for adults with CLL/SLL who have received at least two prior lines of therapy, including a BTK and BCL-2 inhibitor.

To learn about how pirtobrutinib works, its effectiveness, and its side effects, click here.

CAR T-cell Therapy Liso-cel

The CAR T-cell therapy liso-cel (Breyanzi by BMS) is FDA-approved for CLL/SLL patients who have received previous treatment with a BTK and BCL-2 inhibitor.

To learn about how liso-cel works, its effectiveness, and its side effects, click here.

Additional insights about liso-cel were presented by Dr. William G. Wierda from U.T. M.D. Anderson Cancer Center. These included:

While most side effects of liso-cel were manageable, patients with high inflammation markers, poor kidney health, or a high tumor burden before treatment faced a greater risk of worse brain-related side effects.
Liso-cel appears to work the same regardless of high-risk CLL/SLL type, such as unmutated IGHV, del(17p)/TP53 mutation, and complex karyotype.
The fewer prior treatments a patient has had, the better liso-cel seems to work.
Early but promising data shows that combining liso-cel with other CLL therapies, such as ibrutinib, might be safe and improve results.

BTK Degraders

BTK degraders are another treatment option in clinical trials for people with relapsed/refractory CLL/SLL. Click here to learn about how they work.

The BTK degraders being investigated in trials include NX-5948 (by Nurix Therapeutics), ABBV-101 (by AbbVie), and BGB-16673 (by BeiGene). Dr. Wierda presented early findings about BGB-16673 from the CaDAnCe-101 study.

Out of the 43 CLL/SLL patients who received BGB-16673 at a dose of 200 mg, 88% of patients experienced either a partial or complete reduction of cancer signs/symptoms (overall response).
For the most part, the side effects from BGB-16673 were manageable. However, low blood counts and infections were a risk. To learn how side effects from BTK degraders are managed, please speak with your CLL specialist.

Bispecific Antibodies

Bispecific antibodies are a treatment option available for people with relapsed/refractory CLL/SLL in clinical trials. The types of bispecific antibodies being investigated for CLL/SLL include epcoritamab (Epkinly, by Genmab and AbbVie), mosunetuzumab (Lunsumio by Genentech), and glofitamab (Columvi by Genentech).

Dr. Wierda shared that after people with CLL/SLL were treated with epcoritamab, 63% of them experienced a full or partial reduction in cancer signs/symptoms (overall response). This included high-risk CLL patients.

Another promising finding was that most patients who achieved a response also achieved MRD negativity, a highly sensitive test that finds little to no cancer cells in a sample.

For side effects from epcoritamab, cytokine release syndrome (CRS) was predictable, happening after the first full dose. Another notable finding was that any side effects patients did experience resolved.

Click here to learn about how bispecific antibodies work and how to receive them in clinical trials.

Additional New CLL Treatments in Clinical Trials

Various other treatments are being investigated for CLL/SLL. These therapies are in the early stages of testing. We’ll write additional content on these treatments below as more data comes to light about their effectiveness in treating CLL/SLL.

Therapies in the early stages of clinical trials for CLL:

Non-covalent BTK inhibitors: Nemtabrutinib, TT-01488, LP-168, AS-1763
Second-generation BCL-2 inhibitors: lisaftoclax, sonrotoclax, ABBV-453
BCLxL/BCL-2 inhibitor: LP-118
MALT1 inhibitor: ABBV-525
CDK9/MCL-1 inhibitors

Stay tuned to read more news about active research in chronic lymphocytic leukemia by clicking the button below.

Continue Reading CLL News

Summary

In conclusion, the PeerView educational session offered valuable insights on managing CLL treatment side effects and exploring third-line options such as pirtobrutinib, liso-cel, BTK degraders, and bispecific antibodies.

These discussions provide helpful information for people with CLL and their care partners to navigate the complex treatment landscape. It can be challenging to keep up with the advancements of so many new treatments, but it's inspiring to witness the exploration of numerous innovative therapies for people with chronic lymphocytic leukemia.

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Coping with a blood cancer diagnosis can be a profound emotional journey, encompassing a range of feelings from fear and anxiety to hopelessness. To support you in managing these emotions, an increasingly recognized therapeutic approach is Eye Movement Desensitization and Reprocessing (EMDR).

Originally developed for treating trauma, EMDR has shown promise in helping individuals confront a variety of stressful life experiences, including chronic illness management. This therapy technique may help you recover more quickly from traumatic emotions associated with living with blood cancer.

What is EMDR?

EMDR is a psychotherapy technique designed to alleviate the distress associated with traumatic memories. Developed by Francine Shapiro in the late 1980s, it's based on the premise that the mind can heal from psychological trauma much as the body recovers from physical trauma. When you cut your hand, for instance, your body works to close the wound. If a foreign object or repeated injury irritates the wound, it festers and causes pain. Once the block is removed, healing resumes.

EMDR therapy demonstrates that a similar sequence of events occurs with mental processes. The brain's information processing system naturally moves toward mental health unless it's blocked by the impact of a disturbing event.

How Does EMDR Work?

EMDR therapy involves focusing simultaneously on (1) associations of difficult images, thoughts, emotions, and bodily sensations and (2) bilateral stimulation, such as tapping your knees alternately with your hands. This dual attention stimulates the brain's information processing system, enabling it to process the difficult event.

Steps to Perform EMDR at Home

EMDR can be performed under the guidance of a trained therapist or adapted to use at home. EMDR steps include:

Set up a comfortable space: Find a quiet, comfortable space where you can relax without interruption.
Identify a distressing memory or emotion: Think about a memory that is troubling you. This can be related or unrelated to your blood cancer diagnosis.
Start bilateral stimulation: You can do this by tapping your knees alternately with your hands or tapping each shoulder with the alternate hand. You can also choose to do the eye movement version of EMDR. Feel free to follow along with the self-guided video below, or hold your fingers about 18 inches in front of your face and move them slowly from side to side, following with your eyes only.
Focus on the distressing memory: As you engage in bilateral stimulation, allow your mind to focus on the distressing memory or emotion. Notice what thoughts, feelings, or bodily sensations arise.
Anchor in the present: After a few moments of focusing on the distressing memory while engaging in bilateral stimulation, bring your attention back to the present moment. Focus on your breathing or a physical object in your surroundings.
Reflect: Think about the experience. Did your feelings or thoughts about the memory change? Do you feel less distressed?

The duration of EMDR therapy varies depending on the individual's needs. Some may experience relief in just a few sessions, while others may require a longer period.

EMDR Benefits

EMDR therapy may offer several benefits for people with blood cancer, including:

Improved immune function: Chronic stress can weaken the immune system. EMDR therapy helps reduce stress, which in turn can support your immune system.
Reduced stress and anxiety: By processing traumatic memories, EMDR can help lower stress and anxiety levels.
Improved coping strategies: EMDR can enhance coping mechanisms, enabling patients to better manage their emotional responses to the cancer.
Enhanced quality of life: Lower stress levels can significantly improve overall quality of life, allowing patients to enjoy more activities and maintain stronger relationships.

Conclusion

For people with blood cancer, navigating the emotional impact of the diagnosis is as important as managing the physical aspects. EMDR presents a promising therapeutic approach to address the psychological toll, offering support in emotional healing and resilience. As with any therapy technique, it is recommended to consult with a licensed mental health therapist to ensure it's an appropriate strategy for your specific situation.

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Sources:

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People diagnosed with cancer can often face mental health issues such as depression, anxiety, and emotional distress. This article explains how antidepressants can help reduce the mental health burden in cancer care. It also covers how these treatments interact with cancer therapies and the importance of addressing mental health alongside physical treatment.

Mental Health Challenges Are Common During Cancer

According to the NIH, up to 40% of people with cancer experience emotional distress. Around 25–30% are diagnosed with psychiatric conditions like depression, anxiety, or difficulty adjusting to the new lifestyle. Depression and anxiety are not just side effects of cancer; they can worsen quality of life or delay seeking treatment.

That’s why integrating mental health care into cancer treatment is essential. However, research shows that mental health is often underdiagnosed and undertreated in cancer patients.

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Antidepressants May Improve Psychological and Physical Symptoms

Several studies confirm that antidepressants can effectively manage moderate to severe depression in people with cancer. Selective serotonin reuptake inhibitors (SSRIs) and SNRIs, or serotonin-norepinephrine reuptake inhibitors, are among the most used antidepressants due to their effectiveness and low side effects.

Beyond treating depression, antidepressants can help with symptoms that often come with cancer and its treatment:

Fatigue: Medications like bupropion (Wellbutrin) have stimulating effects and may improve energy and concentration.
Nerve pain: medications like duloxetine (Cymbalta) can relieve nerve pain from chemotherapy.
Sleep issues and appetite loss: Mirtazapine (Remeron, Organon) may improve sleep, reduce nausea, and boost appetite.
Hot flashes: SSRIs and SNRIs have shown success in managing hot flashes, particularly for people on hormonal therapies.

These added benefits make antidepressants a useful option for people experiencing multiple symptoms related to cancer.

Avoiding Drug Interactions for Better Outcomes

People with cancer often take many medications. Some antidepressants can interact with chemotherapy or hormone treatments. For example, if an antidepressant interacts with the metabolism of a chemotherapy treatment, the effect could range from neither working to an unexpected side effect.

This is why doctors must evaluate each person’s full treatment plan when prescribing antidepressants. If a medication you are taking interacts with a new one, keep in mind there are always options, not only for medication for mental health, but also for cancer care.

SSRIs Might Offer Protective Effects Against Certain Cancers

Some large studies suggest SSRIs could reduce the risk of developing certain cancers. For example:

A 39% lower risk of oral cancer in people who used SSRIs
Reduced rates of liver cancer with fluoxetine (Prozac) and sertraline (Zoloft) use.

These findings are still being researched, but they highlight the need to look at the broader effects of these treatments.

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Are Guidelines For Mental Health In Cancer Used?

While there are mental health guidelines for cancer care, these are not consistently used. Some doctors may not recognize when emotional symptoms go beyond expected distress, and some hospitals lack dedicated mental health services. This gap in care means many patients who could benefit from antidepressants or therapy never receive them. Training providers to identify mental health issues and creating better connections between oncology and mental health services could improve outcomes.

A Holistic Approach to Cancer Treatment

Combining antidepressant treatment with counseling or therapy offers the best results. Collaborative care, where psychological and medical support are integrated, can reduce symptoms and improve daily activities.

When using antidepressants, especially with anti-cancer treatment, it’s also important to:

Start at low doses to reduce side effects
Choose medications based on the symptoms (energy loss, insomnia, anxiety)
Monitor closely for drug interactions
Reevaluate regularly to adjust treatment

Remember that it may take 2–4 weeks to notice improvement and 4–6 weeks for the full effect. Always consult with your healthcare team about possible interactions with your current treatment, and if you notice discomfort or anything out of the ordinary, seek advice before discontinuing treatment on your own.

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Final Thoughts

Mental health care is a crucial but often overlooked part of cancer treatment. Antidepressants can relieve psychological symptoms and support overall well-being. When used carefully and with proper guidance, they can also help manage physical symptoms like pain, fatigue, and hot flashes. Ensuring these therapies are part of a personalized, integrated care plan can make a meaningful difference in patients’ quality of life.

Stay tuned for more articles at the HealthTree News site!

See Mental Health Resources

Sources:

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A new scientific study published in Nature Journals offers insight into how leukemia cells grow, specifically pointing to taurine, an amino acid found naturally in the body and some foods, as a possible contributor. In this article, you’ll learn what taurine is, how it affects leukemia cells, and why understanding its role in the bone marrow may be important for future therapies.

What is Taurine’s Role In Leukemia?

Taurine is a non-essential amino acid, meaning the body can produce it on its own. It’s also present in meat, fish, eggs, and some energy drinks and protein supplements. Taurine supports functions in the heart, brain, muscles, and bone marrow.

Researchers from the Wilmot Cancer Institute at the University of Rochester found that taurine may play a much more specific role in leukemia and blood cancers. Their study shows that leukemia cells cannot produce taurine on their own. Instead, they absorb it from the bone marrow microenvironment.

Researchers used genetic tools to block the taurine transporter in mouse models and human leukemia cell samples. This stopped the leukemia cells from growing. This discovery highlights a new way to target cancer cells without affecting healthy cells. This can help develop new therapies that stop taurine from reaching these cancer cells, which could help slow disease progression.

Taurine May Interact With Other Blood Cancer Types

This research focused on different subtypes of myeloid cancers, including:

Acute myeloid leukemia (AML)
Chronic myeloid leukemia (CML)
Myelodysplastic syndromes (MDS)

All of these start in blood-forming stem cells in the bone marrow. The study found that the taurine transporter is essential across these types, meaning this mechanism may be relevant for new the development of new therapies.

Taurine Supplements May Not Be Safe for Everyone

Taurine is widely available in supplements and energy drinks, and some cancer patients use it to manage side effects of therapy. However, based on this new data, Dr. Jane Liesveld, a leukemia expert and study co-author, cautions that high-dose taurine could actually be feeding cancer cell growth in the bone marrow.

If you are considering or already using taurine supplements, you can talk more about this with your healthcare team to determine if you are benefiting from taurine supplementation or if you could use an alternative. While taurine has been explored for benefits in other cancers, such as stomach cancer, its effects in leukemia appear to differ and may require more careful evaluation.

What’s Next

Dr. Jeevisha Bajaj, lead investigator of this study, emphasized the need to study taurine levels in people with leukemia to better understand its role. The team’s current data supports developing treatments that block taurine uptake in cancer cells. This research could help shape safer and more effective therapies by cutting off a key nutrient that leukemia cells depend on.

Learning more about the role of supplements in their specific cancer type can help patients make informed decisions about their health, and further improving their outcomes. You can learn more about research news and treatment advances in our HealthTree News site.

Sources:

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People living with blood cancer may be overwhelmed by many difficult emotions related to the cancer diagnosis, treatment, or just everyday life. These emotions can often pull us out of the present moment, immersing us in past memories or future anxieties, and creating feelings of detachment and disconnection from our current environment.

To navigate these challenging emotions, the grounding technique offers an effective way to re-anchor oneself in the \"here and now.\" This helps pull us out of spirals of overwhelming emotion and return to the present.

The key to successfully implementing grounding is awareness. The first step is to recognize when we have mentally checked out. Once we identify that we are detached from the present, often as a defense mechanism against painful realities, we can choose to ground ourselves.

A Four-Step Grounding Technique

Visual Connection\n
- Begin by focusing on your surroundings. Take in the details - the color, shape, and position of objects around you. Spend about 5 minutes on this step. For example, one might observe, \"The white curtains in front of me are swaying gently with the breeze, revealing a blue sky outside. My drink cup to my left has steam floating from it.\"
\n
Mindful Breathing\n
- Shift your attention to your breathing. Feel the gentle ebb and flow of your breath. Aim to spend about five minutes on this, breathing deeply and slowly at first in through the nose and out through the mouth, then transitioning to your natural rhythm.
\n
Physical Awareness\n
- Turn your focus to your body's sensations. Feel the weight of your body on the chair, the touch of your feet on the floor, and any tension or relaxation in other areas of your body. Spend about five minutes on this step.
\n
Engage Other Senses\n
- Finally, tap into your other senses. What scents do you smell? What sounds, near or far, do you hear? Spend about five minutes on this step.
\n

Once patients practice the above grounding technique until it becomes a familiar habit, they will have a valuable emotional resilience tool to draw upon when depression or anxiety tries to pull them out of the present moment. Help stop emotional spirals and protect your mental well-being. You are welcome to shorten or lengthen the amount of time for each step as you see fit.

If you need further help supporting your emotional well-being, it is recommended that you contact a licensed mental health counselor who can provide you with more resources. We encourage you to take the needed steps to improve your mental health and quality of life.

Continue Reading Blood Cancer News

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DBT: Dialectical Behavior Therapy

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This article shares insights from two studies. The first shows how emotional and cognitive health can be affected in people living with chronic lymphocytic leukemia (CLL), especially during the watch-and-wait period. The second highlights survey findings that point to areas where emotional support can be improved for minority individuals with CLL.

Real-world mental health challenges of CLL patients

Mental health needs can begin during watch-and-wait, not just after treatment starts

The first study found that people living with CLL often experienced mental health concerns, such as anxiety or depression, soon after their diagnosis, especially if they were not yet receiving therapy. This early phase, often called active surveillance or watch-and-wait, is when doctors monitor CLL without starting treatment right away.

As well, out of 7,734 people with CLL, those in the watch-and-wait group had higher average mental health-related healthcare visits per month than those who started their first or second CLL treatment.

This is important to understand because it alerts patients to look for mental health symptoms that may need professional support, even during the watch-and-wait period. Recognizing these signs early can help you get the care you need to protect your overall well-being.

Cognitive concerns were also part of the picture

The researchers also looked at cognitive impairment, such as dementia or Alzheimer’s. They found that people in the watch-and-wait group had more cognitive-related healthcare visits than those who were receiving treatment for CLL, showing a similar pattern to the group of patients who attended mental healthcare visits.

If you experience cognitive issues, speak with your doctor about supportive measures to help you.

Mental health findings of underrepresented CLL patients

Highlighting an increased need for culturally sensitive care

The second survey explored how mental health experiences may differ or overlap among minority groups living with CLL. This research is important because it sheds light on disparities, indicating where more support is needed.

Among 232 CLL patients, 45% of Asian, 38% of Hispanic, and 24% of Black patients expressed a strong need for emotional and educational support tailored to their cultural values, compared to only 2% of Caucasian patients.

These results show the need for offering more culturally sensitive support for underrepresented groups living with CLL.

Processing the CLL diagnosis

When asked about their emotional responses at diagnosis, many Hispanic, Black, and Asian individuals reported high levels of fear (67%) and surprise (56%). Among Caucasian participants, fear was even more common (90%), along with surprise (71%).

72% of Hispanic participants also reported more difficulty knowing what steps to take next and feeling heard by their providers. Additionally, across all groups, fewer than half of the patients felt emotionally supported by their doctors.

While CLL specialists are focused on helping you manage the cancer effectively, they may not be trained in mental health care. If you’re experiencing ongoing feelings of depression or anxiety, it’s important to seek support from a licensed mental health professional who can help you manage the emotional impact of a CLL diagnosis, whether during watch-and-wait or CLL treatment.

Summary

Based on real-world findings, people with CLL were more likely to experience and seek support for mental health concerns or other cognitive impairments during watch-and-wait than during CLL treatment. This is important to know because emotional and cognitive challenges may arise even when no active treatment is being given, and recognizing them early can help individuals get the support they need sooner.

An additional study found that Hispanic, Black, and Asian patients with CLL were more likely than Caucasian patients to want emotional support that reflected their cultural values. This highlights how important it is for healthcare teams to provide inclusive, culturally sensitive support, which can help build trust and improve emotional well-being for minority groups.

If you're struggling emotionally, consider speaking with a licensed mental health professional. They can help you manage the difficult emotions that may come with a CLL diagnosis.

Additional resources are available here: Improving Mental Health Among Blood Cancer Patients.

We need your help! Easily contribute to CLL research

If you are living with CLL, we need your support to improve 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 or 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:

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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!

Discover More News

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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At the 2025 Intercepting Blood Cancers (IBC) conference held in Nice, France, Marwan Kwok, MD, PhD, of Dana-Farber Cancer Institute, presented results from a phase 1 clinical trial of the CLL vaccine NeoVax during a session titled “Updates on vaccination as an early intervention strategy in CLL.”

To understand how NeoVax works, refer to our original article here: A Personalized CLL Vaccine Being Studied for Patients in Watch and Wait: NeoVax

Below, we provide the latest updates from the study.

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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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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Continue learning about financial assistance for blood cancer patients with our monthly free webinars. Create a free account to watch all the past recordings, or register for the next one!

Explore Financial Assistance Webinars

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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If myeloma, lymphoma, or leukemia patients are referred to receive CAR T-cell therapy, what barriers are keeping them from receiving it?

Yannis Valtis, MD, a Chief Fellow at Memorial Sloan Kettering Cancer Center, led research efforts to evaluate these barriers. The study’s findings were discussed at the 2024 ASH conference.

Watch Dr. Valtis’ interview on barriers to CAR T-cell therapy below and continue reading for a summary of his important research.

6 Barriers to Receiving CAR T-Cell Therapy

Out of 400 blood cancer patients (myeloma, lymphoma, and leukemia) referred to receive CAR T-cell therapy, 44% of these patients ended up not getting the treatment.

What happened?

From Dr. Valtis’ research, the reasons patients did not receive CAR T-cell therapy included:

\n
Cancer Progressed Too Quickly:
\n
- \n
  CAR T-cell therapy made from a patient’s own T-cells takes several weeks to make. The top reason why patients didn’t receive the treatment was because the cancer progressed too quickly before the therapy was ready.
  \n
\n
\n
Treatment Shortage or No Clinical Trial Available:
\n
- \n
  The second reason patients didn’t receive their scheduled CAR T-cell therapy was that the treatments were not available or that patients couldn’t access the therapy in a clinical trial.
  \n
\n
\n
Concerns About Side Effects:
\n
- \n
  The third reason blood cancer patients didn’t receive CAR T-cell therapy was because either they or their doctor had concerns about side effects and decided to withdraw.
  \n
\n
\n
No Immediate Need for Therapy:
\n
- \n
  Some patients were referred when the cancer was stable or in remission, so they did not need the treatment.
  \n
\n
\n
Logistical Issues:
\n
- \n
  Many patients faced difficulties with logistical issues, such as needing to relocate or not having a caregiver.
  \n
\n
Other Reasons:\n
- \n
  A few patients and doctors were concerned about whether the treatment would work.
  \n
- Some patients could not receive the treatment due to manufacturing problems.
\n

Additional insights from the study mentioned that patients with lymphoma were more likely to receive the therapy than those with myeloma.

Also, Black patients were less likely to receive the treatment compared to White patients, even when considering their type of cancer.

Possible Solutions

To help more patients receive CAR T-cell therapy, possible improvements could include:

Early Referrals\n
- Referring patients earlier for CAR T-cell therapy could support enough preparation time for treatment before the cancer worsens.
\n
Faster Treatment Options\n
- Researchers are developing ready-to-use CAR T-cells, also known as “off-the-shelf” CAR T-cell therapy from donors. This could help remove the delay period for patients who need a fast turnaround.
\n
Improved Patient and Doctor Education\n
- More information could help patients and doctors decide sooner and understand the risks and benefits of CAR T-cell therapy.
\n
Addressing Racial Disparities\n
- Further studies are needed to understand and remove barriers that prevent Black patients from receiving CAR T-cell therapy.
\n

Conclusion

CAR T-cell therapy is a promising treatment for blood cancer patients, but not everyone who is referred can receive it. The most common barriers include the cancer progressing too fast, the treatment is not available, and concerns about side effects.

By referring patients earlier, developing “off-the-shelf” treatment options, educating about side effect management, and addressing logistical challenges, more patients could benefit from CAR T-cell therapy.

Things to Consider with Your First CLL Treatment

Dr. Jeff Sharman from Willamette Valley Cancer Institute shared that CLL treatment starts when one or more of the iwCLL guidelines are met. Click here to read about the criteria for starting CLL treatment.

He discussed whether it is beneficial to treat CLL before one of the guidelines is met. When looking at the total amount of time a person with CLL has been alive since diagnosis (overall survival), patients lived the same amount of time whether they received ibrutinib treatment early or not.

Although receiving an early CLL diagnosis is beneficial, Dr. Sharman recommended not starting treatment before one of the iwCLL guidelines is met to help reduce the amount of time patients are exposed to possible side effects.

When it is Time to Start Treatment, What can People with CLL Expect?

If patients take the pill continuously, ibrutinib (Imbruvica, Johnson & Johnson) works for about 9-10 years before it becomes ineffective.
Zanubrutinib (Brukinsa, BeiGene) is similar in its effectiveness to acalabrutinib (Calquence, AstraZeneca). These second-generation BTK inhibitors are preferred over ibrutinib as they have fewer side effects.
Adding obinutuzumab (Gazyva, Genentech) to acalabrutinib helps patients achieve an improved outcome for a longer period of time than taking acalabrutinib alone.
If you have the IGHV mutation, the fixed-duration one-year combination of venetoclax (Venclexta, AbbVie) with obinutuzumab helps patients achieve longer remissions than other CLL types.
After you finish your first treatment, just because CLL may come back does not necessarily mean you need to start another therapy right away. Rather, you wait for treatment indicating symptoms to appear once again.

Click the button below to read about the potential benefits and drawbacks of choosing between different CLL therapies, such as BTK inhibitors and venetoclax.

Considerations for Selecting a CLL Treatment

Combining BTK Inhibitors and BCL-2 Inhibitors

Dr. Kerry Rogers from Ohio State University shared that BTK inhibitors and BCL-2 inhibitors, when taken together, improve the effectiveness of each other for targeting CLL cells.

She also stated that anti-CD20 antibodies like obinutuzumab enhance the effectiveness of these therapies and should be added to the BTK and BCL-2 inhibitor combination.

Many CLL clinical trials are underway or have been completed evaluating these treatment combinations. If you are interested in joining one of the studies, the trial’s page is hyperlinked below if it is still recruiting patients.

Studies enrolling participants as of December 2024:

Dr. Ahn’s study evaluating zanubrutinib + venetoclax for relapsed/refractory patients (recruiting).
BOVen trial reviewing zanubrutinib + venetoclax + obinutuzumab as patients’ first CLL treatment (recruiting).
Phase 1 study testing sonrotoclax by itself or in combination with zanubrutinib + obinutuzumab (recruiting).
Phase 3 study reviewing sonrotoclax + zanubrutinib vs. venetoclax + obinutuzumab for first-time treated CLL (recruiting).
BELLWAVE-010 trial testing nemtabrutinib + venetoclax vs. venetoclax + rituximab for relapsed/refractory CLL (recruiting).

Studies that are completed or active but not recruiting:

GLOW study testing ibrutinib + venetoclax (active, not recruiting).
Alliance trial evaluating ibrutinib + venetoclax + obinutuzumab vs ibrutinib + obinutuzumab (active, not recruiting).
CLL13 study reviewing venetoclax + obinutuzumab vs. venetoclax + obinutuzumab + ibrutinib (completed).
AMPLIFY trial testing acalabrutinib + venetoclax vs. acalabrutinib, venetoclax, and obinutuzumab (active, not recruiting).
SEQUOIA arm D study reviewing zanubrutinib + venetoclax for first-time treated patients (active, not recruiting).
BRUIN CLL-322 study evaluating pirtobrutinib + venetoclax + rituximab vs. venetoclax + rituximab (active, not recruiting).

Summary

Dr. Jeff Sharman emphasized that CLL treatment should begin only when iwCLL criteria are met, as treatment before this does not improve overall survival and may expose patients to unnecessary side effects. When treatment starts, second-generation BTK inhibitors like zanubrutinib or acalabrutinib are preferred over ibrutinib due to fewer side effects, and combinations such as venetoclax with obinutuzumab offer promising options for the majority of CLL patients, specifically for those with the IGHV mutation.

Dr. Kerry Rogers highlighted that combining BTK inhibitors and BCL-2 inhibitors enhances their effectiveness in targeting CLL cells and that adding anti-CD20 antibodies like obinutuzumab further boosts this effect. Numerous clinical trials are evaluating these treatment combinations, offering potential opportunities for patients interested in participating.

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Continue Reading CLL News

Click the button below to keep reading news about chronic lymphocytic leukemia (CLL).

Continue Reading CLL News

Sources:

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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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Sources:

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

We need your help! Easily contribute to blood cancer research

Make an Impact with Brief Blood Cancer Surveys

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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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What is EMDR?

How Does EMDR Work?

Steps to Perform EMDR at Home

EMDR can be performed under the guidance of a trained therapist or adapted to use at home. EMDR steps include:

Set up a comfortable space: Find a quiet, comfortable space where you can relax without interruption.
Identify a distressing memory or emotion: Think about a memory that is troubling you. This can be related or unrelated to your blood cancer diagnosis.
Start bilateral stimulation: You can do this by tapping your knees alternately with your hands or tapping each shoulder with the alternate hand. You can also choose to do the eye movement version of EMDR. Feel free to follow along with the self-guided video below, or hold your fingers about 18 inches in front of your face and move them slowly from side to side, following with your eyes only.
Focus on the distressing memory: As you engage in bilateral stimulation, allow your mind to focus on the distressing memory or emotion. Notice what thoughts, feelings, or bodily sensations arise.
Anchor in the present: After a few moments of focusing on the distressing memory while engaging in bilateral stimulation, bring your attention back to the present moment. Focus on your breathing or a physical object in your surroundings.
Reflect: Think about the experience. Did your feelings or thoughts about the memory change? Do you feel less distressed?

The duration of EMDR therapy varies depending on the individual's needs. Some may experience relief in just a few sessions, while others may require a longer period.

EMDR Benefits

EMDR therapy may offer several benefits for people with blood cancer, including:

Improved immune function: Chronic stress can weaken the immune system. EMDR therapy helps reduce stress, which in turn can support your immune system.
Reduced stress and anxiety: By processing traumatic memories, EMDR can help lower stress and anxiety levels.
Improved coping strategies: EMDR can enhance coping mechanisms, enabling patients to better manage their emotional responses to the cancer.
Enhanced quality of life: Lower stress levels can significantly improve overall quality of life, allowing patients to enjoy more activities and maintain stronger relationships.

Conclusion

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Mental Health Challenges Are Common During Cancer

That’s why integrating mental health care into cancer treatment is essential. However, research shows that mental health is often underdiagnosed and undertreated in cancer patients.

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Antidepressants May Improve Psychological and Physical Symptoms

Beyond treating depression, antidepressants can help with symptoms that often come with cancer and its treatment:

Fatigue: Medications like bupropion (Wellbutrin) have stimulating effects and may improve energy and concentration.
Nerve pain: medications like duloxetine (Cymbalta) can relieve nerve pain from chemotherapy.
Sleep issues and appetite loss: Mirtazapine (Remeron, Organon) may improve sleep, reduce nausea, and boost appetite.
Hot flashes: SSRIs and SNRIs have shown success in managing hot flashes, particularly for people on hormonal therapies.

These added benefits make antidepressants a useful option for people experiencing multiple symptoms related to cancer.

Avoiding Drug Interactions for Better Outcomes

SSRIs Might Offer Protective Effects Against Certain Cancers

Some large studies suggest SSRIs could reduce the risk of developing certain cancers. For example:

A 39% lower risk of oral cancer in people who used SSRIs
Reduced rates of liver cancer with fluoxetine (Prozac) and sertraline (Zoloft) use.

These findings are still being researched, but they highlight the need to look at the broader effects of these treatments.

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Are Guidelines For Mental Health In Cancer Used?

A Holistic Approach to Cancer Treatment

When using antidepressants, especially with anti-cancer treatment, it’s also important to:

Start at low doses to reduce side effects
Choose medications based on the symptoms (energy loss, insomnia, anxiety)
Monitor closely for drug interactions
Reevaluate regularly to adjust treatment

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Final Thoughts

Stay tuned for more articles at the HealthTree News site!

See Mental Health Resources

Sources:

What is Taurine’s Role In Leukemia?

Taurine May Interact With Other Blood Cancer Types

This research focused on different subtypes of myeloid cancers, including:

Acute myeloid leukemia (AML)
Chronic myeloid leukemia (CML)
Myelodysplastic syndromes (MDS)

Taurine Supplements May Not Be Safe for Everyone

What’s Next

Sources:

Sonrotoclax + Zanubrutinib: A Rising Treatment Approach

BTK with BCL-2 inhibitor combinations are gaining traction in treating chronic lymphocytic leukemia (CLL) due to their complementary mechanisms, which enhance therapy effectiveness.

Comparing Sonrotoclax Doses

Remission Results

Among the 108 evaluable patients treated with zanubrutinib and sonrotoclax, 100% experienced a reduction in cancer cells.

Complete response:\n
- 160 mg sonrotoclax group: 40% of patients
- 320 mg sonrotoclax group: 42% of patients
- Median time to achieve a complete response: 8.4 months
- A complete response means CLL was not detected, and a patient’s spleen and lymph nodes were not enlarged
\n

Minimal Residual Disease (MRD) Results

Achieving undetectable minimal residual disease (uMRD) is significant because it may predict a longer period in remission if treatment stops.

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

	Zanubrutinib + 160 mg sonrotoclax group	Zanubrutinib + 320 mg sonrotoclax group
Percentage of patients who achieved uMRD4 by week 24 of treatment	59%	78%
Percentage of patients who achieved uMRD4 by week 48 of treatment	82%	91%
Median time to achieve uMRD4	9.7 months	8.5 months

Side Effect Findings

Summary

The combination of zanubrutinib with a daily 320 mg dose of sonrotoclax showed strong treatment results:

All individuals saw a decrease in cancer cells
42% of patients achieved a complete response
91% of individuals achieved undetectable minimal residual disease (uMRD4) after 48 weeks
At the median follow-up of 19.4 months after starting treatment, no patients had experienced cancer progression

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Continue Reading CLL Treatment Advancements

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A Four-Step Grounding Technique

Visual Connection\n
- Begin by focusing on your surroundings. Take in the details - the color, shape, and position of objects around you. Spend about 5 minutes on this step. For example, one might observe, \"The white curtains in front of me are swaying gently with the breeze, revealing a blue sky outside. My drink cup to my left has steam floating from it.\"
\n
Mindful Breathing\n
- Shift your attention to your breathing. Feel the gentle ebb and flow of your breath. Aim to spend about five minutes on this, breathing deeply and slowly at first in through the nose and out through the mouth, then transitioning to your natural rhythm.
\n
Physical Awareness\n
- Turn your focus to your body's sensations. Feel the weight of your body on the chair, the touch of your feet on the floor, and any tension or relaxation in other areas of your body. Spend about five minutes on this step.
\n
Engage Other Senses\n
- Finally, tap into your other senses. What scents do you smell? What sounds, near or far, do you hear? Spend about five minutes on this step.
\n

Continue Reading Blood Cancer News

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DBT: Dialectical Behavior Therapy

Real-world mental health challenges of CLL patients

Mental health needs can begin during watch-and-wait, not just after treatment starts

Cognitive concerns were also part of the picture

If you experience cognitive issues, speak with your doctor about supportive measures to help you.

Mental health findings of underrepresented CLL patients

Highlighting an increased need for culturally sensitive care

These results show the need for offering more culturally sensitive support for underrepresented groups living with CLL.

Processing the CLL diagnosis

Summary

If you're struggling emotionally, consider speaking with a licensed mental health professional. They can help you manage the difficult emotions that may come with a CLL diagnosis.

Additional resources are available here: Improving Mental Health Among Blood Cancer Patients.

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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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!

Discover More News

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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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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.

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

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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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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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Sonrotoclax + Zanubrutinib: A Rising Treatment Approach

BTK with BCL-2 inhibitor combinations are gaining traction in treating chronic lymphocytic leukemia (CLL) due to their complementary mechanisms, which enhance therapy effectiveness.

Comparing Sonrotoclax Doses

Remission Results

Among the 108 evaluable patients treated with zanubrutinib and sonrotoclax, 100% experienced a reduction in cancer cells.

Complete response:\n
- 160 mg sonrotoclax group: 40% of patients
- 320 mg sonrotoclax group: 42% of patients
- Median time to achieve a complete response: 8.4 months
- A complete response means CLL was not detected, and a patient’s spleen and lymph nodes were not enlarged
\n

Minimal Residual Disease (MRD) Results

Achieving undetectable minimal residual disease (uMRD) is significant because it may predict a longer period in remission if treatment stops.

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

	Zanubrutinib + 160 mg sonrotoclax group	Zanubrutinib + 320 mg sonrotoclax group
Percentage of patients who achieved uMRD4 by week 24 of treatment	59%	78%
Percentage of patients who achieved uMRD4 by week 48 of treatment	82%	91%
Median time to achieve uMRD4	9.7 months	8.5 months

Side Effect Findings

Summary

The combination of zanubrutinib with a daily 320 mg dose of sonrotoclax showed strong treatment results:

All individuals saw a decrease in cancer cells
42% of patients achieved a complete response
91% of individuals achieved undetectable minimal residual disease (uMRD4) after 48 weeks
At the median follow-up of 19.4 months after starting treatment, no patients had experienced cancer progression

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What is Taurine’s Role In Leukemia?

Taurine May Interact With Other Blood Cancer Types

This research focused on different subtypes of myeloid cancers, including:

Acute myeloid leukemia (AML)
Chronic myeloid leukemia (CML)
Myelodysplastic syndromes (MDS)

Taurine Supplements May Not Be Safe for Everyone

What’s Next

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.

NeoVax Phase 1 Updates for CLL

CLL and the Immune System

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

Does NeoVax Recruit CLL-Killing Immune Cells?

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

Can NeoVax Stop CLL Progression?

Key Takeaways

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?