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During Blood Cancer Awareness Month, we're highlighting the impactful efforts of HealthTree Foundation in blood cancers. At HealthTree, we are dedicated to empowering patients with knowledge, connecting them to cutting-edge research, and fostering a supportive community.

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HealthTree Cure Hub: Accelerating Cures Through Patient-Driven Research

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At the heart of HealthTree's innovation is HealthTree Cure Hub, a platform that's revolutionizing blood cancer research. HealthTree Cure Hub connects patients directly to clinical trials, accelerating the development of new treatments. But it goes beyond trials. By gathering real-world data and patient-reported outcomes, HealthTree Cure Hub provides researchers with invaluable insights that are shaping the future of blood cancer care.

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Continue Exploring All the Benefits of HealthTree Cure Hub

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Real-World Impact: Examples of HealthTree Research

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HealthTree Foundation is actively contributing to blood cancer research. For example, a recent study reported on real-world experiences of patients undergoing some specific myeloma treatments, including the treatment decision-making process, patients' expectations and evaluation of treatment, and patient perspectives and information needs related to CAR T-cell therapies and bispecific antibodies.

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We also recently shared the results of the use of cannabis to manage pain and anxiety and the use of dietary supplements in patients with multiple myeloma, what motivates these patients to use supplements, and where they get their information about them.

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HealthTree Cure Hub is facilitating research in different stages of the treatment, such as the ongoing study on stem cell mobilization in patients undergoing a stem cell transplant. This research will help understand the challenges and hopefully improve the stem cell collection process for patients.

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Participate in Blood Cancer Research, Become a Cure Contributor

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HealthTree Cure Hub empowers patients to become active participants in research. By connecting your medical records, participating in surveys, and contributing to studies, you provide researchers with critical data that can lead to breakthroughs in blood cancer treatment.

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Create a free account and explore our open patient surveys here:

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JOIN/LOG IN TO HEALTHTREE CURE HUB

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!AD!

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Empowering Patients Through Knowledge and Connection

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At HealthTree, we understand that knowledge is power. Through our website and educational resources, HealthTree provides patients and their loved ones with trustworthy information about their specific blood cancer, treatment options, and managing side effects.

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But HealthTree is more than just information; it's a community. Through our online forums and webinars, patients can connect with others facing similar challenges, share experiences, and find support.

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Learn More About Blood Cancer

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HealthTree's Coach Program pairs newly diagnosed patients with trained volunteer coaches who have navigated similar diagnoses, providing personalized guidance and support.

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Join the HealthTree Community

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!AD!

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Expanding Support for All Blood Cancers

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While HealthTree Foundation began as a myeloma-focused organization, it has expanded its reach to support all blood cancers. We are currently most active in:

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!AD!

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We encourage all blood cancer patients and their loved ones to join our growing community. Together, we can make a difference.

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HealthTree Foundation: Innovation that saves lives

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What is pancytopenia? What causes it, and what are its treatments? Learn answers to these questions and more below!

What is Pancytopenia?

In simple terms, pancytopenia means your body is not producing enough of all blood cell types (red, white, and platelets). Various things can cause pancytopenia. Identifying the cause can help determine the right treatment. If a cause cannot be found, it is called idiopathic pancytopenia. To learn about how this condition is managed, please see the treatment section below.

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What are the Symptoms of Pancytopenia?

Symptoms of pancytopenia can vary from mild to severe. Because all blood cells are affected, you might experience symptoms related to the following conditions:

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Anemia: Low red blood cells. You may experience symptoms like fatigue and pale skin.
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Leukopenia: Low white blood cells. A symptom of low white blood cells includes experiencing increased infections.
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Thrombocytopenia: Low platelets. You may experience easy bruising or bleeding. In some cases, the bruises may appear as small red dots.
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What Causes Pancytopenia?

Various conditions can cause blood cells to decrease. Some of these include:

Active infections like parvovirus B19, hepatitis, human immunodeficiency virus (HIV), cytomegalovirus, Epstein-Barr virus, COVID-19, tuberculosis, and malaria.

Autoimmune conditions involve immune cells that attack healthy blood cells. These include systemic lupus erythematosus, rheumatoid arthritis, and sarcoidosis.

Nutritional abnormalities if there are not enough nutrients to make an adequate amount of healthy blood cells, or if excessive intake of toxic substances damages the bone marrow. Nutritional abnormalities linked to pancytopenia include vitamin B12 deficiency, folate deficiency, excessive alcohol intake, and malnutrition.

Cancers that affect blood cell production in the bone marrow like multiple myeloma, types of lymphomas, leukemias, myelodysplatic syndromes, and myeloproliferative neoplasms. Click here to find a comprehensive list of blood cancers.

Other cancers that started outside of the bone marrow and made their way to the bone marrow can also affect healthy blood cell production.

Blood or bone marrow disorders like aplastic anemia, paroxysmal nocturnal hemoglobinuria, Fanconi anemia, and Diamond-Blackfan anemia.

Exposure to cancer treatment like chemotherapy or chemicals like benzene may damage or decrease the production of healthy blood cells.

Blood cell buildup in the spleen, also called splenic sequestration, can lead to pancytopenia. This can occur due to alcoholic liver cirrhosis, portal hypertension, infections, autoimmune disease, cancers, or due to storage diseases such as Gaucher’s disease.

What are the Treatments for Pancytopenia?

If your doctor finds that multiple types of your blood cell counts are low, they will likely screen you for the above health conditions that could contribute to pancytopenia. Once the source of the issue is located, the condition causing healthy blood cells to decrease will be treated.

To help increase low blood cell counts during the treatment of the root cause, you may receive supportive measures like:

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Red blood cell transfusion
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Platelet transfusion
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Infection-fighting medicines like antibiotics, antivirals, and immunoglobulin infusions (IVIG) to decrease the risk of infections if you have low white blood cells
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Conclusion

In summary, pancytopenia is a condition characterized by the decrease of all types of blood cells, leading to a wide array of symptoms, including fatigue, increased infections, and easy bruising. The causes of pancytopenia are diverse, ranging from autoimmune diseases to nutritional deficiencies and various cancers. Identifying the underlying cause with your doctor is crucial for effective management.

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Sources:

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NIH Pancytopenia
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Pancytopenia
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Disease-modifying therapies go beyond symptom management to slow disease progression and increase the likelihood of patient survival. They treat underlying causes rather than only manifestations or symptoms.

Janus kinase (JAK) inhibitors, the standard of care in patients with myelofibrosis (MF) for over a decade, help some key disease symptoms, such as enlarged spleen and fatigue − but they do not provide direct survival benefits. JAK inhibitors are primarily anti-inflammatory and have limited disease-modifying effects. Since they were the last great innovation for patients with MF, the medical community’s response to the disease has necessarily focused on symptom relief.

Unmet Need in Myelofibrosis: Disease-Modifying Treatment

However, research is advancing again, with the discovery of new therapeutic targets (such as nuclear factor–κB and the B-cell lymphoma-2 pathway) resulting in many novel agents under investigation. These include pelabresib, navitoclax, imetelstat, and navtemadlin. Clinical trials are assessing these medicines as monotherapy or in combination with ruxolitinib in patients with poor response to a JAK inhibitor or without any prior JAK inhibitor exposure.

These agents have potential disease-modifying effects. With this expanded horizon, investigators are able to employ new study endpoints, the most important of which are “progression-free survival” and “overall survival.” Simultaneously − and it is an exciting problem to have − a definition of disease modification in myelofibrosis must be determined.

Consensus is needed within the medical community to facilitate new responses to the disease and updated trial designs. For example, reductions in bone marrow fibrosis have been reported with both ruxolitinib and novel agents. Still, without evident increases in progression-free survival or overall survival, the importance of these reductions is uncertain.

Robust discussion is underway, and the definition will continue to evolve until a formal consensus is reached. One proposed definition states that:

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Disease modification in myelofibrosis is a therapy that exerts a meaningful impact on survival outcomes and/or restoration of normal blood-cell production in conjunction with improvement in bone marrow fibrosis.
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JAK Inhibition Will Continue to Play a Role

Despite the limited disease-modifying activity of JAK inhibitors, the JAK2 mutation is the most common in people with myelofibrosis. Therefore, the JAK pathway remains a pivotal feature of MF pathology, and JAK inhibition will not be disregarded moving forward. Combination therapies involving a novel agent plus a JAK inhibitor are expected. In fact, ruxolitinib−novel agent combinations have already shown improved benefits for patients in two international phase 3 clinical trials.

The JAK inhibitor ruxolitinib was the first FDA-approved medicine for treating myelofibrosis (in 2011), followed by fedratinib, pacritinib, and recently momelotinib. Ruxolitinib is still the preferred first-line treatment in appropriate patients, with the other JAK inhibitors serving as options if the response is suboptimal. In clinical trials, treatment with ruxolitinib was associated with spleen response and improvement of symptoms. However, approximately 50% of patients with myelofibrosis discontinue ruxolitinib due to reduced response or intolerance after about 3 years.

Within Approximately a Year ….

The possibility of disease modification for patients with myelofibrosis may transform clinical practice and treatment decision-making. More importantly, it could mean improved survival for patients. The pharmaceutical company behind pelabresib intends to submit the investigational medicine for approval in the US and Europe by the end of 2024. Change is coming … soon.

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People who are educated about their care live longer, better lives. Sign up to receive our newsletter on myelofibrosis and stay up-to-date with the latest treatment advances:

Subscribe to the Myelofibrosis Newsletter

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Sources:

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Most people living with myelofibrosis have heard about JAK2 and JAK2 mutations, but what exactly is JAK2, and how do these mutations play a role in developing the disease? Here, we try to break down a very complex biological process to help you understand how our bodies work.

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Myeloproliferative neoplasms are types of blood cancer that begin with an abnormal mutation in a stem cell in the bone marrow. The change leads to an overproduction of white cells, red cells, and platelets. Stem cells are defined by their potential to develop into many different types of cells. In addition, they can replicate themselves. Stem cells are in almost all tissues of the body. They are critical for the maintenance of tissue and repair after injury. Thus, a stem-cell mutation can have serious consequences.

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Continue reading about the causes of myelofibrosis: 'Why Do I Have Myelofibrosis?'

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JAK2: A Key Element in the Disease Process

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In 1951, a researcher first proposed an “undiscovered stimulus” causing the overproduction of bone marrow cells and leading to myeloproliferative neoplasms (MPN). Subsequently, in a sweeping effort to find kinases (a type of protein enzyme) that prompt cell growth and development, Janus-associated kinase 2 (JAK2) was discovered. JAK2 is important for controlling the production of healthy blood cells from stem cells.

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Each of the 4 JAK proteins in the JAK family has two kinase areas, or “domains”: one active and one inactive. For this reason, they were named after Janus, the two-faced Roman god of doors and new beginnings.
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An Altered Gene Leads to Crossed Cellular Signals and Biochemical Missteps

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In 2005, mutations in the JAK2 gene (which produces the JAK2 protein enzyme) were found in most people with MPN. Moreover, 50% to 60% of patients with myelofibrosis had a specific mutation of the JAK2 gene called V617F.

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Typically, when there is no mutation, a kinase sends action signals to other proteins, which then change shape to allow mutual “docking” at “receptor” locations, like puzzle pieces fitting together. The process involves a variety of complex biochemical reactions and a cascade of signaling. Importantly, normal JAK signaling involves the recruitment and activation of STATs (signal transducers and activators of gene transcription), which bind DNA and regulate gene activity. Inflammatory factors also play important roles. If any one step is aberrant, all the next steps are likely to be aberrant, like an out-of-place domino in a long row of falling dominoes.

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The V617F mutation of the JAK gene causes structural rigidity where there should be none, activates receptors that should be dormant, and disrupts rather than facilitates certain key interactions. As a result, the “on/off” cell-production switch remains “on” for too long, which leads to scarring in the bone marrow, an excess of abnormal white blood cells, and too few functioning red blood cells.

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The JAK2-V617F mutation is also common to polycythemia vera and essential thrombocythemia, two additional myeloproliferative neoplasms.

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Opportunity for New Therapies

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JAK2 was quickly recognized to be a viable therapeutic target. JAK inhibitors, therapies designed to inhibit the activity of the JAK family of enzymes, were developed. Within 6 years of the identification of JAK2 V617F, the FDA approved ruxolitinib, an oral JAK1 and JAK2 inhibitor, for the treatment of intermediate or high-risk myelofibrosis in adults.

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Questions about JAK2 remain. For instance, researchers do not know why JAK2 mutations can be seen in a wide variety of myeloproliferative diseases, all with different symptoms and outcomes for patients.

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The JAK2 mutation is the most common mutation in people with myelofibrosis, but there are others, like the mutation of the calreticulin (CALR) gene and the mutation of the myeloproliferative leukemia protein (MPL) gene. However, some people with myelofibrosis don't have any identifiable gene mutations.

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Learn More About Myelofibrosis and Take Charge of Your Care with HealthTree

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To stay informed about the latest developments in myelofibrosis research and treatment, we encourage you to sign up for our newsletter and register for our upcoming webinars. By connecting with others who have similar experiences, you can find support, share insights, and work together towards better outcomes.

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SUBSCRIBE TO MYELOFIBROSIS NEWSLETTER

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Sources:

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\n","language":"EN","metaDescription":"Ever wondered how a simple genetic change can lead to a complex disease like myelofibrosis? Learn about JAK2 and JAK2 mutations.","metaTitle":"What are JAK2 Mutations in Myelofibrosis?","publishedAt":{"_type":"Date","value":"Thu Aug 29 2024 04:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"myelofibrosis, myeloproliferative neoplasms, mpn, myelofibrosis news, healthtree for myelofibrosis, what are the causes of myelofibrosis, what is jak2, JAK2 mutation, blood cancer, stem cells, bone marrow, Janus-associated kinase 2, polycythemia vera, essential thrombocythemia, JAK inhibitors, ruxolitinib, CALR mutation, MPL mutation","slug":"jak2-explained","status":"ACTIVE","title":"The Bodily Mechanisms That Can Lead to Myelofibrosis","updatedAt":{"_type":"Date","value":"Thu Aug 29 2024 13:56:28 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/ZxgolxTbw2K3x2R43eO5"},"snapshot":{"exists":true,"id":"ZxgolxTbw2K3x2R43eO5","ref":{"_type":"DocumentReference","path":"apps/community/articles/ZxgolxTbw2K3x2R43eO5"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/GxAhXAnh3drV4xY5Vf3A-1620"},"categories":[{"_type":"DocumentReference","path":"apps/community/articleCategories/6rooOV0N0pIvVGoOUxQg"}],"category":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"createdAt":{"_type":"Date","value":"Thu Feb 22 2024 19:50:46 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"diseases":[{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fmyelofibrosis%20_349bf3be-23e2-41f2-bb06-b632fa744027.jpg?alt=media","htmlContent":"

According to the Cleveland Clinic, myelofibrosis is a rare type of blood cancer where the bone marrow is replaced by fibrous scar tissue. The scarring and the excess cancer cells can prevent the bone marrow from making healthy blood cells.

\n\n

Receiving a cancer diagnosis like myelofibrosis can often bring forward the questions "How long will I live with this disease?" or "What can I expect the quality of life of my loved one to be?"

\n\n

These are important and valid questions that deserve answers. Unfortunately, with a diagnosis like myelofibrosis, it's not always as simple as it might seem. In solid tumor cancers,(like breast cancer or colon cancer) it's easier to correlate the prognosis of the patient with the stage of cancer they are diagnosed with, but in myelofibrosis, the evaluation is not as obvious.

\n\n

Myelofibrosis has a median survival rate of six years, which means that about 50% of diagnosed people live less than six years, and about the same number of people live longer than six years.

\n\n

So, how long should I expect to have myelofibrosis?

\n\n

According to the Merriam-Webster dictionary, prognosis means "the prospect of recovery as anticipated from the usual course of disease or peculiarities of the case".

\n\n

In other words, knowing one's myelofibrosis prognosis would give them a glimpse into how well they will live with the disease and how likely they are to make a full recovery.

\n\n

Now, while there is no current cure for all myelofibrosis patients because even if allogeneic stem cell transplantation is a potential cure, not everyone can receive this treatment; the longevity of patients and their quality of life is the primary goal of all treatment options.

\n\n

Multiple factors affect prognosis, including:

\n\n

Age
Symptoms
Number of blood cells reported in the bone marrow biopsy
Complete blood count
The severity of the scarring in the bone marrow
The presence of genetic mutations like JAK, CALR and MPL

\n\n

What is the Longest-Known Survival with Myelofibrosis?

\n\n

While this question seems pretty straightforward, it’s challenging to respond to because there are multiple causes that lead to myelofibrosis, and each case is different.

\n\n

The longest-known survival of myelofibrosis is difficult to pinpoint precisely, as individual cases can vary widely and medical records may not always be available or complete. However, there have been cases reported where individuals with myelofibrosis have survived for decades. As noted above, some patients have lived well beyond 20 years since their initial diagnosis.

\n\n

It's important to note that these cases of exceptionally long survival are likely to be influenced by a combination of factors, including:

\n\n

Early diagnosis: Catching the disease in its early stages before it has progressed significantly can lead to better outcomes and longer survival.
Effective treatment: Individuals who have responded well to treatments and achieved durable remissions are more likely to experience longer survival.
Advancements in treatment: The development of new treatment options and therapeutic approaches has significantly improved the outlook for myelofibrosis patients over the years.
Supportive care: Improved supportive care measures help manage treatment side effects and maintain overall quality of life.
Genetic and molecular factors: Some individuals may have specific genetic or molecular characteristics of their disease that make it more responsive to treatment, for example, the JAK mutation which responds to Jak2 inhibitors. Those with high-risk genetic translocations, deletions, or additions of their disease often have a harder time achieving and maintaining deep responses.
Individual variation: Each person's response to treatment and disease progression can vary widely, making long-term survival possible in some cases.

\n\n

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By securely connecting your electronic health records, HealthTree Cure Hub allows you to discover treatment options, find a specialist, keep track of your disease and so much more! Sign up for a free patient account today to get started.

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\n","language":"EN","metaDescription":"Receiving a diagnosis like myelofibrosis can often bring forward the questions \"How long will I live with this disease?\"","metaTitle":"What is the prognosis of a MF patient? ","migratedReason":"global-community","migratedReason2":"fix global-community categories","oldAuthor":{"_type":"DocumentReference","path":"apps/community/authors/1vO0sDcKQ1xaO7RLgTwE"},"oldCategory":{"_type":"DocumentReference","path":"apps/community/categories/WwfRmptAL5USkrKWx6PO"},"publishedAt":{"_type":"Date","value":"Mon Jul 22 2024 04:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"myelofibrosis, myelofibrosis what is it, symptoms of myelofibrosis, mf blood cancer, mf cancer, can you die from myelofibrosis, end stages of myelofibrosis, prognosis for myelofibrosis, what is the life expectancy of someone with myelofibrosis, myelofibrosis life expectancy,","slug":"what-is-the-prognosis-of-a-myelofibrosis-patient","status":"ACTIVE","title":"What Is The Prognosis Of A Myelofibrosis Patient?","updatedAt":{"_type":"Date","value":"Sun Jul 14 2024 12:45:35 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/SlLPXX68SRIR9PBhyDv9"},"snapshot":{"exists":true,"id":"SlLPXX68SRIR9PBhyDv9","ref":{"_type":"DocumentReference","path":"apps/community/articles/SlLPXX68SRIR9PBhyDv9"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NRcFf0ATixvpHmsyX2JM"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/MB3xw38fuKkx0LdszsrL"},"createdAt":{"_type":"Date","value":"Mon Jul 01 2024 15:42:25 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"diseases":[{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/polycythemia-vera"},{"_type":"DocumentReference","path":"diseases/myeloproliferative-neoplasm"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fanemia_3d11d3d9-f1a2-411b-bb56-a933536512f9.jpg?alt=media","htmlContent":"

Erythrocytosis occurs when the red blood cells are extremely elevated, damaging normal blood circulation and the body’s function.

\n\n

Erythrocytes are red blood cells whose main function is transporting oxygen and nutrients through the bloodstream, circulating to reach every organ. They are called that because of their red color (erythros in Greek means red). Several conditions can affect the number of these cells.

\n\n

Cytosis is a Latin suffix referring to cells. Latin and Greek etymologies are commonly used for medical terms. Cytosis means there are cells or a lot of cells, while cytopenia means fewer or scarce cells.

\n\n

A blood sample can be used to determine the number of red blood cells with a lab test called complete blood count (CBC). Physicians can examine an estimated blood count and, most importantly, the levels of hemoglobin.

\n\n

Hemoglobin is a protein present in all red blood cells and helps carry oxygen. The normal amount of hemoglobin in blood is 12.1-15.9 g/dL, although this range varies slightly according to age and sex. Erythrocytosis is associated with hemoglobin levels over 16 g/dL, while when hemoglobin is less than 12 g/dL, it may indicate the presence of a condition called anemia.

\n\n

Which Lab Tests Provide Information About Red Blood Cell Levels?

\n\n

Hemoglobin (Hb): This protein within red blood cells carries oxygen. Normal levels typically range from 12.1 to 15.9 grams per deciliter (g/dL) for adults.
Hematocrit (Hct): This test measures the percentage of your entire blood volume that's made up of red blood cells. A normal hematocrit level usually falls between 34.3% and 46.6%.
Mean corpuscular volume (MCV): This value indicates the average size of your red blood cells. Generally, a healthy MCV falls within the range of 26.5 to 32.6 picograms (pg).
Mean corpuscular hemoglobin concentration (MCHC): This test measures the average amount of hemoglobin present inside a single red blood cell. Normal MCHC levels typically range from 32.7 to 36.9 grams per deciliter (g/dL).
Red cell distribution width (RDW): This test reflects the variation in the size and concentration of your red blood cells. A lower RDW indicates a more uniform cell size and cell count, while a higher RDW suggests a greater variation. The normal range for RDW is generally between 10.8% and 14.1%.
Iron panel: Iron is a crucial mineral for hemoglobin and red blood cell production. An iron panel typically includes tests for serum iron, ferritin, transferrin, and total iron binding capacity (TIBC). These values help doctors assess your body's iron stores, which can affect red blood cell production.

\n\n

Of note, the normal values shared above are reference ranges, but this can vary slightly by institution and by patients’ sex and age.

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What Causes Erythrocytosis?

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Erythrocytosis is a secondary condition, meaning that it is the result of an underlying illness. That’s why it is also called secondary polycythemia.
\nErythrocytosis most often develops as a response to chronic low oxygen levels in the blood. The body’s response is to increase red blood cells to transport more oxygen. The most common causes of low oxygen levels include:

\n\n

Obstructive sleep apnea
Hypoventilation syndrome, common in people with obesity: a condition where respiration is abnormally slow, and the body accumulates too much carbon dioxide in the blood and not enough oxygen.
Chronic obstructive pulmonary disease (COPD): a common lung disease causing restricted airflow and breathing problems.
Testosterone replacement therapy because it stimulates hormones that can increase red blood cell levels.
Heavy and chronic cigarette smoking

\n\n

Other causes of erythrocytosis that wouldn’t be directly associated with low oxygen levels are:

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History of heart valve or heart surgery
Erythropoietin-secreting tumors, like hepatocellular carcinoma, renal cell carcinoma, and adrenal adenoma. Erythropoietin is a hormone secreted by the kidney that stimulates the growth of red blood cells.

\n\n

How Is Erythrocytosis Treated?

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Since it is a secondary condition with multiple possible causes, the main goal is to treat the underlying cause. However, there is a treatment for those patients whose red blood cell volumes cause circulation issues.

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Large amounts of red blood cells can make the blood thicker and harder to flow through small blood vessels.

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Especially when hematocrit is higher than 60%-65%. These patients may experience symptoms such as impaired alertness, dizziness, headaches, and compromised exercise tolerance and may face increased risk for blood clots, strokes, heart infarction, and deep venous thrombosis. For those cases, treatment with phlebotomy is indicated.

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Phlebotomy is a simple procedure where a healthcare professional removes a specific amount of blood from your body. By removing some blood, phlebotomy helps:

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Reduce the number of red blood cells: This lowers your blood's thickness and improves circulation.
Decrease the risk of blood clots: Thick blood is more likely to form clots, which can be dangerous.

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Source:

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Secondary Polycythemia

\n","language":"EN","metaDescription":"Erythrocytosis: Elevated red blood cells harm circulation and function. Causes include low oxygen, smoking, etc. Diagnosis via CBC; treat the underlying cause.","metaTitle":"What is Erythrocytosis? 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You have myelofibrosis. Do you also have to worry about extramedullary hematopoiesis?

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What Is Extramedullary Hematopoiesis and Why Does It Occur?

\n\n

Extramedullary hematopoiesis (EMH) is a complication of myelofibrosis. Extramedullary means occurring outside of the bone marrow. Hematopoiesis means blood-cell formation. The bone marrow is supposed to be the only site of blood-cell production.

\n\n

EMH occurs when organs (such as the spleen, liver, lungs, and digestive tract) try to compensate for the bone marrow's underproduction of red blood cells in myelofibrosis, trying to rebalance bodily systems.

\n\n

When the bone marrow is no longer functional, reactively, the organs (most commonly the spleen and the liver) undertake the work themselves, and they become enlarged as a result. This enlargement is called splenomegaly (enlarged spleen) and hepatomegaly (enlarged liver).

\n\n

Extramedullary Hematopoiesis Is Common in Myelofibrosis Patients

\n\n

You have already heard EMH described in definitions of myelofibrosis, as it is common− it just may not have been named. Approximately 90% of people living with myelofibrosis (MF) have an enlarged spleen due to EMH when they’re diagnosed; about 39% to 65% may have an enlarged liver.

\n\n

EMH also occurs in other conditions involving ineffective blood-cell production, such as thalassemia, sickle cell disease, and folate or vitamin B12 deficiency. (Thalassemia is a blood disorder passed down through families where the body makes mutated [disordered] hemoglobin or insufficient hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen.)

\n\n

EMH also has been reported in solid tumors like breast cancer and lung cancer.

\n\n

How Will Extramedullary Hematopoiesis Affect Me?

\n\n

An enlarged spleen can cause pain or discomfort in your abdomen or below your left ribs. You also may feel full even when you have barely eaten.

\n\n

An enlarged liver can lead to abnormal levels of liver enzymes, which can lead to abdominal pain, fatigue, nausea, and vomiting or result in yellowing of the skin and whites of the eyes (jaundice). The enlargement of the liver can also impair blood clotting.

\n\n

Treatments for enlarged spleen include:

\n\n

JAK inhibitors (ruxolitinib [Jakafi®; also the newer fedratinib [Inrebic®], pacritinib [Vonjo®], and momelotinib [Ojjaara®])
Immunomodulators (thalidomide and lenalidomide; spleen responses are modest)
Chemotherapy drugs (hydroxyurea, interferon, cladribine)
Splenectomy (removal of the spleen)
Radiation therapy

\n\n

Treatments for an enlarged liver include:

\n\n

Ruxolitinib

\n\n

EMH can result in complications other than splenomegaly and hepatomegaly, depending on the specific organ involved, with potentially life-threatening consequences.

\n\n

EMH affecting the central nervous system may lead to chronic headaches, delirium, sensitivity to light, papilledema (swelling of optic discs in your eyes due to increased intracranial pressure), and gait instability. Rarely, EMH develops near the spine and causes spinal cord compression.

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EMH affecting lymph nodes can lead to generalized lymphadenopathy, which is swelling of lymph nodes that can indicate bacterial, viral, or fungal infections, autoimmune disease, or malignancy.

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Finally, if the lungs are impacted by EMH, pleural effusions (a buildup of fluid around the lungs; the pleura is a thin layer of tissue covering the lungs and lining the interior wall of the chest cavity to protect and cushion the lungs) may result.

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Take Care of Yourself to Avoid Complications

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It’s important to take good care of yourself. Diabetes, hypertension, atherosclerotic or pulmonary disease, or obesity could worsen the complications of EMH. Proper nutrition and movement can help when if you are facing one or more of these comorbidities.

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If you want to stay informed on important education and information about myelofibrosis, sign up for our bi-weekly newsletter here!

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Myelofibrosis Newsletter

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Sources:

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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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We’re excited to share some incredible news with you today. Our founder, Jenny Ahlstrom, and HealthTree Coach, Tony Newberne, were featured on ABC News with Mara Bush!

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In this inspiring segment, Jenny and Tony explain how HealthTree’s groundbreaking technology and patients' invaluable contributions power the search for blood cancer cures.

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We invite you to watch in the video below.

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About HealthTree Foundation

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\n","isBmh":true,"language":"EN","metaDescription":"HealthTree Foundation’s innovative research and patient-centered approach was recently featured on ABC News.","metaTitle":"HealthTree Featured on ABC News","publishedAt":{"_type":"Date","value":"Tue Jul 16 2024 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"HealthTree ABC News Article, HealthTree Press Release, HealthTree Foundation News","slug":"healthtree-foundation-abc-news-feature","status":"ACTIVE","title":"HealthTree Foundation Featured on ABC News","updatedAt":{"_type":"Date","value":"Thu Aug 08 2024 15:27:03 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:35:51 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/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/essential-thrombocythemia"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"healthtree-press","sectionConfig":{"news":{"description":"Read articles about HealthTree's progress in major media publications in video, online and in newspapers.","metaDescription":"These articles are about HealthTree's progress in major media publications in video, online and in newspapers.","metaTitle":"HealthTree Press - HealthTree Myeloma","order":9,"tileOrder":5,"type":"SMALL_TILE"}},"sections":["NEWS"],"slug":"healthtree-press","status":"ACTIVE","title":"HealthTree Press","updatedAt":{"_type":"Date","value":"Thu Apr 25 2024 18:37:51 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/SOL2ODcbaDI1CazQRbRS"},"snapshot":{"exists":true,"id":"SOL2ODcbaDI1CazQRbRS","ref":{"_type":"DocumentReference","path":"apps/community/categories/SOL2ODcbaDI1CazQRbRS"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/ClKhx3YQ7vbZvnmmsaz7"},"snapshot":{"exists":true,"id":"ClKhx3YQ7vbZvnmmsaz7","ref":{"_type":"DocumentReference","path":"apps/community/articles/ClKhx3YQ7vbZvnmmsaz7"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/GxAhXAnh3drV4xY5Vf3A-1620"},"categories":[{"_type":"DocumentReference","path":"apps/community/articleCategories/38"}],"category":{"_type":"DocumentReference","path":"apps/community/categories/SOL2ODcbaDI1CazQRbRS"},"createdAt":{"_type":"Date","value":"Wed Feb 28 2024 23:09:20 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GMiulNhUPGrzlsCN3Fmv"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2FResearch%20Hub_24d132bd-95b3-43c8-9ca8-4df83cf1b663.png?alt=media","htmlContent":"

We're excited to announce the exciting and anticipated launch of HealthTree Foundation's HealthTree Research Hub. This portal uses cutting-edge technology to unite patients and researchers in order to accelerate cures and facilitate real-world data for researchers around the world. The Research Hub is being launched in multiple myeloma today.

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HealthTree Foundation Founder, Jenny Ahlstrom, shares more about the exciting launch in the video below.

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Check out the press release here or continue reading to learn more about this exciting advancement in myeloma research and technology.

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HealthTree Research Hub is an online research portal that facilitates real-world data (RWD) research. HealthTree Research Hub provides researchers access to over 14,000 myeloma patients who contribute anonymized data to the HealthTree Cure Hub patient portal.

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This data includes electronically imported EHR data (labs, genetics, prior lines of therapy, outcome data, etc) as well as patient-contributed data such as patient-reported outcomes (PRO) and demographics.

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Patients can also respond to investigator surveys or studies inside of HealthTree Cure Hub. The data is validated by a team of HealthTree medical professionals (also known as disease navigators.)

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The tool builds a living, ongoing, and interactive relationship between patients and researchers, opening revolutionary approaches to new research that save time, money, and lives.

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“HealthTree Research Hub is the only tool that enables access to larger, more comprehensive and constantly updated data sets,” said Jenny Ahlstrom, HealthTree CEO and Founder. ”Traditional RWD challenges of incomplete or inaccurate data, missing patient reported outcomes or lost-to-follow up issues are overcome because of the ongoing, interactive relationship HealthTree maintains with patients and its validation process.”
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Rafael Fonseca, MD and Chief Innovation Officer, Mayo Clinic, shares:

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“HealthTree Research Hub opens new doors to the research community by providing access to complete, validated RWD [real-world data] from both directly connected EHRs and patients themselves...[t]hank you HealthTree for building the tools we need to invite thousands of patients to contribute to research outside of clinical trials in order to drive faster cures.”
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In HealthTree Research Hub, myeloma investigators can perform data mining, chart reviews, synthetic control arm comparisons, or surveys and studies. Researchers are provided a login/password and R-studio research tools to analyze subsets of anonymized data based on project needs.

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“HealthTree had the financial resources, a willing virtual patient base and the research tools available so we could survey patients and gather their responses via an IRB approved protocol,” said Craig Hofmeister, MD, Emory University. “Their team worked collaboratively with us to create the survey, distribute it to the patients, analyze the results and craft the future publication. It's been a great experience for our team."
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HealthTree Research Hub will facilitate over 100 research projects in the next 20 months for myeloma researchers. A call for multiple myeloma research proposals begins March 1, 2024. Any researcher who joins the HealthTree Research Network will be provided free access to the data. If you are a licensed physician treating multiple myeloma, you can start your application today here: Submit Myeloma Research Proposal

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HealthTree Research Hub will be performing beta research projects in lymphoma, leukemia, and MPNs in 2024.

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If you are looking to participate in myeloma research as or on behalf of a myeloma patient, we invite you to do the following:

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1. Connect your medical records to our database in HealthTree Cure Hub today. It's quick and easy, and you can share your records with confidence that your personal information will be kept private. All information shared with researchers is anonymized. We value your privacy and your security.

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2. Stay tuned to our News Site during March, Myeloma Awareness Month. Our goal this month is to help you be aware of research opportunities for you and your doctor. We will publish articles each week with action steps on how to participate and allow others to do the same. Share these with those in your myeloma circles.

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3. Participate in surveys and studies within HealthTree Cure Hub. This can take 3-5 minutes of your time and influence the way that healthcare providers are treating myeloma patients. Join Cure Hub and start participating today.

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This Blood Cancer Awareness Month, we're reflecting on the progress made and looking ahead to the promising future of blood cancer care. Advancements in research, technology, and treatment approaches are paving the way for more effective and personalized therapies.

Precision Medicine: Targeting Treatment for Better Outcomes

One of the most exciting developments in cancer treatment is the rise of precision medicine. Genetic testing is becoming increasingly sophisticated, allowing doctors to identify specific genetic mutations driving a patient's cancer. This information helps to diagnose patients earlier and tailor treatment plans more precisely with fewer side effects.

A key example is the development of drugs called BTK inhibitors (ibrutinib, acalabrutinib, zanubrutinib), which have revolutionized the treatment of certain types of blood cancers such as chronic lymphocytic leukemia (CLL). These therapies work by blocking a specific protein that some cancer cells need to grow and survive: Bruton’s Tirosin Kinase (BTK). By focusing directly on this protein, BTK inhibitors can stop CLL with fewer side effects than traditional chemotherapy. This approach highlights the promise of precision medicine, often referred to as targeted therapy, which offers patients treatments that are more tailored to the specific details of their cancer. You can read more about BTK inhibitors here.

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Beyond Chemotherapy: The Promise of Immunotherapy

While chemotherapy remains a cornerstone of blood cancer treatment, immunotherapy has emerged as a groundbreaking approach that harnesses the power of the body's own immune system to combat cancer.

You may have heard of different types of immunotherapy, such as antibodies, immunomodulators, and cancer vaccines. One of the most exciting developments in this area is CAR T-cell therapy. This treatment involves taking a patient's own immune cells (the T-cells) and modifying them in a lab to better recognize and attack cancer cells. These improved T-cells are then infused back into the patient, where they seek out and eliminate cancer cells more effectively. CAR T-cell therapy has shown remarkable success in treating certain types of blood cancers that are not responding to other treatments, such as multiple myeloma (MM), acute lymphoblastic leukemia (ALL), and some forms of lymphoma.

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With the help of experts, we have developed a video course where you can find all you need to know about how immunotherapy works. Create a free HealthTree University account to mark your progress and save your favorite videos:

Understanding Immunotherapy

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Stem Cell Transplants: Expanding Access and Improving Outcomes

Stem cell transplants continue to be a potentially curative option for many blood cancer patients. Ongoing research is focused on making transplants safer, more effective, and accessible to a wider range of patients.

One key area of progress is reduced-intensity conditioning (RIC) regimens. Traditionally, patients undergoing a stem cell transplant received high doses of chemotherapy and/or radiation to destroy their diseased bone marrow before the transplant. This process, known as conditioning, could be very toxic and carry significant risks. Reduced-intensity conditioning uses lower doses of chemotherapy and/or radiation, making the transplant process less taxing on the body and potentially safer, especially for older patients or those with other health conditions.

Another important advancement is improved donor matching. Finding a suitable donor is crucial for a successful allogeneic transplant. While a perfect match is ideal, researchers have developed techniques that allow for successful transplants even with less-than-perfect matches, including the use of haploidentical donors (half-matched donors, often a family member). This expands the pool of potential donors and makes transplants possible for more patients.

Furthermore, advancements in supportive care, such as better management of infections and side effects, have significantly improved outcomes for patients undergoing a transplant.

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Join Us in Shaping the Future of Blood Cancers

HealthTree Foundation is committed to advancing research and empowering patients to take an active role in their care. By joining the HealthTree community, you can:

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Stay informed with HealthTree's Free Educational Resources: Receive updates on the latest progress in blood cancer research and treatment.
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Join HealthTree Community and connect with other people living with blood cancer: Find support and share experiences with other patients and care partners.
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Keep track of your disease and contribute to research with HealthTree Cure Hub: Connect your medical records to have everything in one place and participate in surveys and studies shaping the future of blood cancer care.
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Together, we can create a future where blood cancers are no longer a barrier to living a full and meaningful life.

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

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What Obstacles Do Patients Face to Accessing Healthcare?

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

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

\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.

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How Can Patient Navigators Help You Overcome These Barriers?

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

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Examples of services a patient navigator can assist with include:

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

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Audience Q&A

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

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

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

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Conclusion

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

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Become a Cure Contributor by Joining HealthTree Cure Hub!

\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!

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CREATE YOUR FREE HEALTHTREE CURE HUB ACCOUNT

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If you think about it, your money is closely tied to your lifestyle.

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If you live a rather carefree and unstructured lifestyle, you may need a closer grasp on your spending and or savings. You may find that you buy impulsively.

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If you’re more structured, your personality type may include planned spending. You are probably more prone to saving and anticipating expenses.

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For those of you who take money out of the bank but don’t know where it went, let's review options to help you take control of your spending, change your perspective on money, and eliminate things that are not important in your life to prioritize the things that are.

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The goal is to find doable ways to cut expenses that don’t greatly affect your quality of life.

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Healthier You, Healthier Wallet

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Becoming as healthy as possible is a great way to reduce expenses. Eliminating foods with little to no nutrients, like over-processed snack foods, and replacing them with fruits and vegetables can help you save money. This can produce a healthier you and minimize future illnesses and healthcare costs.

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Eating out less, especially when leftovers are available, can save money and time. Cooking rather than eating out is a good way to eat healthier and save money. When you go out to eat, skip the drinks and desserts. Drinks are a premium when purchased at a restaurant, even those happy hour drinks.

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Ditch a bad habit that may be hurting your wallet. If you’re a smoker, stop. You’ll save a lot of money. The cost of a pack of cigarettes is approximately $7. If you smoke one pack/day, that will translate to $2,555/year! Additionally, you may be able to decrease your life insurance premiums as a result, saving you even more money. The savings don’t stop there. You may be saving your health as well.

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Knowing what lifestyle changes to make if you want to save more money and get healthier is very important if you pinpoint a financial goal you want to achieve.

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For goals to become habits, they must be measurable, repeatable, and achievable.

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!AD!

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Take Care of Your Spending

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Be mindful of errands that need to be done. Try incorporating them simultaneously rather than spending time and gas going back and forth.

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Keep your car in good working order. Ignoring oil changes or maintenance schedules can lead to major costly repairs down the road.

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Consider walking rather than taking the car or, better, use public transportation if it's available.
\nI like specialty coffees, so I purchased a coffee maker that allows me to make them at home. It paid for itself in seven months.

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Don’t go grocery shopping when you’re hungry. You’ll probably end up impulse spending and not purchasing healthy foods. Shop from the perimeter of the store first. This is where the better foods are. Processed foods are on the interior shelves.

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Be Aware of Where Your Money Goes

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Other common money hogs that you can tackle include:

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Start tracking your spending habits. You won’t know what to change if you don't know where or how much you’re spending. Use an app or website to help you track. Rocket Money is a great option.
Get on a budget. This will help you not overspend. You will become more mindful of where your money is going. Again, using an app to track your spending and set a budget can be very useful. Google good options for you when it comes to budget tracking.
Cancel unnecessary subscriptions. Lots of money can be wasted on things we don’t even know we are paying for.
Reduce your electric bill. Use LED bulbs throughout your home. Turn off lights in rooms that are not in use. Raise or lower your thermostat. In the summer, close your curtains or blinds against the sun. You will quickly acclimate to the changes. Better yet, check your thermostat and change it out if it’s old.
Prioritize sustainability. Turn off the water while brushing your teeth. Don’t let water run in the shower too long before climbing in. Reduce the time in the shower. Reduce the temperature of your hot water heater, especially in the summer. Don’t fill up the tub!!
Do you feel the need to water the yard daily? Consider replacing it with drought-resistant grasses or a bigger garden with drought-resistant flowers. You can attract more bees to pollinate. A win-win situation!
Consolidate debt and lower interest rates. Consider getting credit cards with 0% interest.
Reduce your insurance premiums for your home and car. Rates change often. Review options and make sure you are not over-insured.
When grocery shopping, shop with a list. As mentioned earlier, shopping when hungry can lead to unnecessary purchases, and in today’s economy, that can add up!
Check to see if you may be eligible for food assistance programs.
Freeze your credit card. Really! If you’re prone to putting things on your card that you really don’t need, put it in the freezer on ice. Then, don’t memorize the card number.
Try only using cash. If you don’t have your card, you can’t use it.
Pay off outstanding debt.
Try cooking large portions and use them throughout the week. Meal planning can help you reach your fitness and financial goals.

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!AD!

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Event Recording

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You can learn more through the recording of our webinar on this topic here:

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Conclusion and Action Steps

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You don’t have to start big; just adopt one or two lifestyle changes that will save you money. These can affect you positively, mentally and physically, and improve your financial health over the long term.

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If you would like to receive guidance on how to reduce spending, connect with Diahanna Vallentine, our Financial Program Manager. She can provide resources that help pay for treatment costs, transportation, etc., so that you have more disposable income for things that you and your family might need. Email her at diahanna@healthtree.org.

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!AD!

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On May 30th, as part of HealthTree’s Blood Cancers Webinar Program, oncology registered dietitian Joan Elizondo, RD, CSO, from Huntsman Cancer Institute shared an insightful presentation on nutritional recommendations for blood cancer patients after treatment. Watch the event’s recording or read the summary below!

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Where Do Dietary Guidelines for Blood Cancer Patients Come From?

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The American Institute of Cancer Research (AICR) updates its dietary guidelines approximately every eight to ten years, compiling a vast array of research studies focused on food's impact on various types of cancer. Implementing these guidelines has the potential to improve patients’ immune systems following treatment.

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!AD!

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5 Wellness Tips for Blood Cancer Patients After Treatment

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Plant-based eating\n\n\t
- One core recommendation is to ensure that two-thirds of your plate consists of fruits, vegetables, whole grains, and non-animal proteins, with the remaining third or less dedicated to animal proteins. This approach, known as the New American Plate model, promotes the intake of antioxidants and phytochemicals found in plant-based foods, which help support the immune system.
\n\t
Limit red and processed meats\n\t
- Red meat consumption should be limited to 12-18 ounces per week. This includes meats like pork, beef, and lamb. Processed meats such as bacon, sausages, and deli meats should be minimized or avoided due to their high sodium content and nitrate curing process.
\n\t
Limit processed foods \n\t
- Blood cancer patients should limit their consumption of processed foods, sugary treats, and fast foods. The guidelines recommend that such foods constitute no more than 15% of one's diet, emphasizing the importance of moderation.
\n\t
Hydration and alcohol intake\n\t
- Staying hydrated is crucial, but that doesn’t have to mean just sticking to plain water. Adding natural flavors like lemon, mint, or cucumber can make hydration more enjoyable. Regarding alcohol, it's advised to limit intake to one drink per day for women and two for men to minimize cancer risks.
\n\t
Physical activity and weight management\n\t
- Regular physical activity is another cornerstone of improving health following treatment. The goal is to achieve at least 150 minutes of moderate weekly exercise, such as brisk walking, where conversation is possible but slightly labored. Maintaining a healthy weight is also critical, with the ideal body mass index (BMI) ranging from 18.9 to 24.9.
\n\t

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!AD!

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Interested in Nutrition Counseling?

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If you need additional nutrition counseling, contact a registered dietitian on your healthcare team. If you need help finding a registered dietitian, ask your doctor who they recommend.

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Audience Q&A

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

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What are your thoughts on fermented foods for blood cancer patients? (Timestamp 29:12)
Do you recommend intermittent fasting for patients? (Timestamp 32:46)
After a stem cell transplant, are there any foods patients should avoid? (Timestamp 57:54)
Do you recommend any superfoods for patients? (Timestamp 1:02:12)

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

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In conclusion, by consuming a diet rich in plant-based foods, reducing the intake of processed foods, staying hydrated, limiting alcohol consumption, incorporating regular physical activity, and maintaining a healthy BMI, blood cancer patients can increase their chances of improving their health following treatment.

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Interested in Learning More About Blood Cancers?

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Click the button below to watch additional HealthTree webinars and expert interviews!

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Watch HealthTree for Blood Cancers Videos

\n","language":"EN","metaDescription":"Registered dietitian Joan Elizondo, RD, CSO, shared an insightful presentation on nutritional recommendations for blood cancer patients after treatment.","metaTitle":"Cancer Patient Dietary Guidelines After Treatment","oldAuthor":{"_type":"DocumentReference","path":"apps/community/authors/xByWWvI42oUh3A80DUjH"},"publishedAt":{"_type":"Date","value":"Fri Jun 14 2024 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"Dietary Guidelines Post Blood Cancer Treatment, Nutrition Tips After Blood Cancer, Eating Well After Multiple Myeloma, Healthy Diet for DLBCL Survivors, Follicular Lymphoma Nutrition Guide, CLL Diet Recommendations, AML Survivor Dietary Guidelines, MDS Nutrition Therapy, Myelofibrosis Diet Plan, Cancer Prevention Diet Blood Cancer, Post-Treatment Nutrition Blood Cancer, Diet After Blood Cancer Therapy, Whole Foods Diet for Blood Cancer Recovery, Anti-Inflammatory Diet for Blood Cancer, Immune Boosting Foods for Blood Cancer Survivors, what to eat with cll, what to eat with aml, what to eat with myelofibrosis, what to eat with mds, what to eat with leukemia, what to eat with lymphoma, what to eat with cancer, what to eat after cancer, what to eat with dlbcl, what to eat with follicular lymphoma, healthtree foundation ","slug":"dietary-guidelines-cancer-patients-after-treatment","status":"ACTIVE","title":"Dietary Guidelines for Blood Cancer Patients After Treatment","updatedAt":{"_type":"Date","value":"Fri Jun 21 2024 15:38:41 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:35:26 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"},{"_type":"DocumentReference","path":"diseases/essential-thrombocythemia"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"healthtree","sectionConfig":{"news":{"description":"Our HealthTree Programs articles highlight the programs, events, and updates of the HealthTree Foundation.","metaDescription":"These articles highlight the programs, events, and updates of the HealthTree Foundation.","metaTitle":"HealthTree Programs - 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On July 2nd, join us for our in-person SLC Cure Tour workshop to learn more about HealthTree and the HealthTree Cure Hub – a powerful, free tool that helps you manage your disease and contribute to cures.

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Dr. Douglas Sborov from Huntsman Cancer Institute will be on hand to talk about potential causes of blood clot prevention and the use of CAR-T in older patients. He will discuss their work in myeloma and blood cancers, new ways patients can participate in research, and answer your questions.

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There is no cost to attend. Registration, parking, and a light dinner are free.

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This meeting is open to patients with multiple myeloma, lymphoma, leukemia, and MPNs, and will not be recorded.

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!AD!

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Why Attend?

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Learn all the ways HealthTree Cure Hub technology works for you and become a cure contributor:

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$\"\"$

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!AD!

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Meeting Details

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Meeting date: Tuesday, July 2nd, 2024 at 5:30 PM
Location: RS Auditorium at Huntsman Cancer Institute, Salt Lake City
Registration, parking, and a light dinner are free
Please bring your laptop and any necessary passwords to open or use your computer

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Questions?
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For questions about registration, contact us at +1-800-709-1113 or support@healthtree.org.
\nFor all other questions, contact curetour@healthtree.org.

\n\n

!AD!

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HealthTree is using innovation to save lives. We empower blood cancer patients with tools that help them live longer and better as they become active contributors to lifesaving research.

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On June 8th, right after our 8th Annual HealthTree 5K/1M, join us for our in-person Columbus workshop to learn more about HealthTree and the HealthTree Cure Hub – a powerful, free tool that helps you manage your disease and contribute to cures.

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!AD!

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Come with a laptop and complete our survey about what may have caused your blood cancer. Our survey will study cancer-causing exposures and their relationship to patient outcomes. HealthTree team members will be on hand to provide support.

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There is no cost to attend. Registration, parking, and a light dinner are free.

\n\n

This meeting is open to patients with multiple myeloma, lymphoma, leukemia, and MPNs, and will not be recorded.

\n\n

Why Attend?

\n\n

Learn all the ways HealthTree Cure Hub technology works for you and become a cure contributor:

\n\n

$\"\"$

\n\n

!AD!

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Meeting Details

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Meeting date: Saturday, June 8th, 2024, at 11:00 AM
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Location: Wolfe Park Shelterhouse. 105 Park Drive, Columbus, OH
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Registration, parking, and lunch are free
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Please bring your laptop and any necessary passwords to open or use your computer.
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Questions?
\nFor questions about registration, contact us at +1-800-709-1113 or support@healthtree.org.
\nFor all other questions, contact curetour@healthtree.org.
\n

\n\n

!AD!

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The SENTRY trial represents a significant step forward in addressing the unmet needs of patients with myelofibrosis (MF), a rare and progressive blood cancer. Conducted by Karyopharm Therapeutics, this Phase 3 trial is designed to evaluate the efficacy of combining selinexor, a first-in-class XPO1 inhibitor, with the standard-of-care JAK inhibitor ruxolitinib in JAK inhibitor-naïve patients.

Why the SENTRY Trial Matters

Unmet Needs in Myelofibrosis Treatment

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Less than half of patients on approved JAK inhibitors achieve the benchmark of a 35% spleen volume reduction (SVR35), and many eventually stop responding.
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Myelofibrosis remains a challenging condition with limited treatment options for managing progressive symptoms and improving long-term outcomes.
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Encouraging Phase 1 Results

Nearly 80% of patients treated with selinexor plus ruxolitinib achieved SVR35 compared to less than 50% with ruxolitinib alone.

Patients experienced an average improvement of 18.5 points in Absolute Total Symptom Score (Abs-TSS), a measure of symptom burden, compared to historical improvements of 11–14 points with JAK inhibitors alone.

Improved Trial Design

Following FDA feedback, the SENTRY trial now includes Abs-TSS as a co-primary endpoint, replacing the Total Symptom Score reduction (TSS50). Abs-TSS offers a more precise measure of cumulative symptom improvement over 24 weeks, aligning better with patient-centered outcomes.

The trial is actively enrolling 350 patients and aims to report top-line results in the second half of 2025.

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What Sets Selinexor Apart

Selinexor works by inhibiting XPO1, a nuclear export protein involved in cancer cell survival. This mechanism complements the action of ruxolitinib, enhancing both symptom control and spleen volume reduction.

The combination therapy has demonstrated a favorable safety profile, with no new adverse signals in early trials.

Expert Perspectives

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Dr. Raajit Rampal, Memorial Sloan Kettering Cancer Center, shares, “The doubling of SVR35 rates and the substantial improvements in Abs-TSS seen in the Phase 1 trial are meaningful and provide strong justification for the Phase 3 SENTRY trial.”
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Another myelofibrosis expert weighs in on the recent clinical trial endpoint change:

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“The shift to Abs-TSS as a co-primary endpoint better represents the cumulative benefit patients experience, aligning with their treatment goals,” says Dr. Ruben Mesa, Atrium Health Levine Cancer Institute.
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Looking Ahead and Enrolling

The SENTRY trial holds promise for delivering a new standard of care for MF patients. By addressing both symptom burden and spleen size reduction with innovative combination therapy, the trial could transform outcomes and quality of life for this underserved patient population.

If you’re interested in enrolling in this clinical trial, click below to learn more:

SENTRY Trial Enrollment

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Sources:

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Karyopharm Announces Favorable Change in Co-Primary Endpoint for Pivotal Phase 3 SENTRY Trial in Myelofibrosis - Oct 31, 2024
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","language":"EN","metaDescription":"The SENTRY trial represents a large step forward for unmet needs of MF patients by treating them with selinexor.","metaTitle":"Advancing MF Treatment: The SENTRY Trial","publishedAt":{"_type":"Date","value":"Mon Dec 02 2024 07:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"MF treatment, myelofibrosis treatment, myelofibrosis clinical trials, SENTRY trial, myelofibrosis treatment updates, what is new in myelofibrosis treatment, selinexor, XPOVIO,","slug":"sentry-trial-update","status":"ACTIVE","title":"Advancing Myelofibrosis Treatment: The Promise of the SENTRY Trial","updatedAt":{"_type":"Date","value":"Mon Dec 02 2024 19:20:30 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:35:12 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"},{"_type":"DocumentReference","path":"diseases/essential-thrombocythemia"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"clinical-trials","sectionConfig":{"news":{"description":"Our Clinical Trials articles highlight top clinical trials, their results, and how patients can participate in them.","metaDescription":"These articles highlight top clinical trials, their results, and how patients can participate in them.","metaTitle":"Clinical Trials - HealthTree Foundation","order":7,"tileOrder":4,"type":"SMALL_TILE"}},"sections":["NEWS"],"slug":"clinical-trials","status":"ACTIVE","title":"Clinical Trials","updatedAt":{"_type":"Date","value":"Thu Apr 25 2024 18:37:47 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"},"snapshot":{"exists":true,"id":"hUncpyMvyuZCF2qvA0Cv","ref":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/mZWjcCwB3pHTafXRXQ4R"},"snapshot":{"exists":true,"id":"mZWjcCwB3pHTafXRXQ4R","ref":{"_type":"DocumentReference","path":"apps/community/articles/mZWjcCwB3pHTafXRXQ4R"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/Y1TeubuOek8X0mlZ691N"},"category":{"_type":"DocumentReference","path":"apps/community/categories/hUncpyMvyuZCF2qvA0Cv"},"createdAt":{"_type":"Date","value":"Fri Nov 22 2024 21:36:11 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/polycythemia-vera"},"diseases":[{"_type":"DocumentReference","path":"diseases/polycythemia-vera"}],"headerImageUrl":"https://healthtree.org/images-resize?imageUrl=https%253A%252F%252Ffirebasestorage.googleapis.com%252Fv0%252Fb%252Fhealthtree-production.appspot.com%252Fo%252Fgallery%25252Fpublic%25252Fshutterstock_1933637141_b1838898-f571-474e-85f9-a746db9eb15e.jpg%253Falt%253Dmedia","htmlContent":"

Learn how a new polycythemia vera (PV) treatment in clinical trials called rusfertide is showing promise in helping patients reduce the number of blood draws they need each year to manage the cancer.

What is Rusfertide for PV?

Rusfertide is a new medicine for people with polycythemia vera (PV) being evaluated in a phase 3 clinical trial called the VERIFY study. The trial is active, but it is no longer recruiting.

Phase 3 refers to comparing the new treatment to standard PV therapy. To learn about how clinical trials work in general, click here.

Rusfertide is administered as an injection. It works by mimicking the hepcidin hormone, which regulates how your body uses iron. Iron is important for a lot of the cellular processes in the body. Treatment with rusfertide tricks the body into believing it has higher blood levels, which causes iron levels to drop in the bloodstream. Then, the production of red blood cells decreases.

This supports PV patients in reducing the number of blood draws (phlebotomy) they need and maintaining healthy blood levels. Blood draws are often needed for PV patients because the cancer affects an overproduction of red blood cells. Click the following link to read more about “What is Polycythemia Vera?”

As a person with PV, decreasing the number of blood draws you receive can help reduce side effects associated with blood draws, like fatigue, brain fog, and traveling to visit a doctor.

How Effective is Rusfertide for PV?

Data from phase 2 of the REVIVE study showed for 70 PV patients who took rusfertide in addition to their ongoing treatment:

The majority of patients experienced a significant reduction in the number of blood draws required. Most patients went from 9 blood draws a year to only 1 blood draw a year.
Patients were supported in maintaining healthy red blood cell levels (hematocrit) without a blood draw for more than two years.
PV-related symptoms like fatigue, night sweats, brain fog, and itching decreased.
The most common side effect experienced was an injection site reaction of itching and swelling. These cases were usually mild and decreased over time.

The pharmaceutical companies Protagonist, in collaboration with Takeda, plan to submit rusfertide’s FDA approval application in 2025.

Summary

Rusfertide is a promising polycythemia vera treatment in a phase 3 clinical trial. Data from the REVIVE study testing rusfertide showed that it helped the majority of PV patients greatly reduce the number of blood draws needed each year, decreased PV-related symptoms, and helped improve red blood cell levels. It is hoped that the medicine will become FDA-approved in 2025.

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

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Sources:

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What is the new medicine RVU120 by RYVU therapeutics, and how may it help reduce signs/symptoms of AML, MDS, and myelofibrosis? Learn answers to these questions and how you may receive RVU120 in recruiting clinical trials.

How Does RVU120 Improve AML, MDS, and Myelofibrosis Signs/Symptoms?

RVU120 helps stem cells (cells capable of forming other blood cells) mature into specialized types, a process called differentiation. This process supports patients affected by cancers that cause issues with the differentiation process, like acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS).

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Early data from studies testing RVU120 have shown that 50% of heavily pre-treated AML and higher-risk MDS patients who take RVU120 experience improved symptoms, including reduced cancer cells and improved blood cell counts. It is particularly beneficial for patients who have the NPM1 mutation, DNMT3a mutation, and higher-risk MDS.

For lower-risk MDS, RVU120 helped improve red blood cell counts, enabling some patients to stop needing red blood cell transfusions.

Another interesting finding from research with RVU120 is that it helped reduce bone marrow scarring seen in myelofibrosis.

Because of these hopeful insights, RVU120 is advancing in its clinical trial stages for AML, MDS, and myelofibrosis.

Where Can I Receive RVU120?

If you have lower-risk MDS, higher-risk MDS, relapsed/refractory AML, or myelofibrosis, learn how you can receive RVU120 in the clinical trials below. For information about how clinical trials work in general, click here.

Lower-risk MDS

REMARK study: RVU120 is administered by itself. You’ll receive the medicine for 8 months. The primary goal of this study is to improve your healthy red blood cell levels. Other study goals include reducing patients' need for blood cell transfusions and limiting cancer cell progression.

Relapsed/refractory AML and higher-risk MDS

RIVER-52 study: RVU120 is administered by itself. You’ll take RVU120 every other day in cycles of 21 days until you are eligible for an allogeneic stem cell transplant. You’ll need to stop treatment if you experience unmanageable side effects or if the cancer progresses despite therapy.

Relapsed/refractory AML

RIVER-81 study: RVU120 is given in combination with venetoclax (Venclexta, AbbVie) for AML patients who are relapsed/refractory to prior treatment with venetoclax and a hypomethylating agent (azacitidine [Vidaza, BMS] or decitabine [Dacogen, Astex]).

Myelofibrosis

POTAMI-61 study: RVU120 is given alone or in combination with ruxolitinib (Jakafi, Incyte). The study’s main goal is to reduce myelofibrosis-related signs/symptoms.

Conclusion

In summary, RVU120 is a new medicine in clinical trials for AML, MDS, and myelofibrosis patients. It works by supporting stem cells to properly differentiate. Early data has shown that RVU120 helped patients improve healthy red blood cell counts, decrease cancer cells, and reduce bone marrow scarring. If you are interested in receiving RVU120 to treat your AML, MDS, or myelofibrosis, please see the above clinical trial links.

Track Your Labs

Are you interested in keeping track of your labs, such as blood counts, in one place? Click on the link below to access your free account!

Track My Labs

Sources:

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Are you curious about what clinical trials are and the benefits of participating in one? Learn about how clinical trials work below. This new understanding can empower you to open the door to innovative treatment options for cancer.

What are Clinical Trials?

Clinical trials, also known as interventional studies, derive their name from being conducted for people or “clinical” subjects. They are led by a principal investigator (PI), who is usually a doctor. The goal of clinical trials is to improve patients' length and health-related quality of life through various medical interventions.

Areas covered by clinical trials may include:

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Comparing the current FDA-approved standard care medicines against newer, potentially more effective treatments
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Therapies that the FDA has approved, but they look at different ways of administering the treatments, such as in combinations or different doses
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Test how new treatments work for a particular disease in a controlled and closely monitored environment
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Strategies to reduce side effects related to cancer or its treatments
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Health-related quality of life patient surveys
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Evaluating new medical devices
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How Can Clinical Trials Benefit Me?

Possible benefits you may receive by participating in a clinical trial include:

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Early access to effective new treatments if they prove successful
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Enhanced medical attention from specialized healthcare professionals
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Thorough monitoring for any side effects
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An opportunity to actively participate in your healthcare decisions
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The chance to aid in the advancement of cancer research and help future patients
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The care you receive, including its treatments, may be fully financially covered by the study
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Possible risks of participating in a clinical trial may include:

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A trial can sometimes require more time and medical attention, such as doctor visits, phone calls, more treatments, a hospital stay, or a more complicated treatment regimen
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Side effects the doctor did not anticipate from the treatment
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New treatments are not always better than current treatments
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The new treatment may not work for you, even if it works for other patients
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If the study is double-blind, you may not know which treatment you’ll be assigned to take
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Is it Free to Participate in a Clinical Trial?

What you may pay for in a clinical trial can vary. Typically, the trial's sponsors cover the treatment, but associated care costs like blood tests might not be included and could require insurance coverage. Ask the principal investigator of the trial any questions you have regarding finances, such as whether expenses related to travel or meals during the study period are reimbursed.

To prepare against justifying the trial’s costs as medically necessary for your insurance, you might need to compile a packet of supportive materials, such as relevant medical studies, a letter from your doctor, or endorsements from patient advocacy groups. The trial coordinator can assist you in assembling these documents.

A note about NIH studies: Clinical trials conducted by the National Institutes of Health (NIH) are free with no insurance involved. Travel costs may be covered in certain cases.

Can I Get Paid to Participate in a Clinical Trial?

Some clinical trials, like Phase I studies involving healthy individuals, may offer compensation ranging from $10-$20 an hour. However, Phase I studies involving people with cancer generally do not pay for participation.

How to find paid clinical trials: To learn if the study you would like to participate in compensates volunteers, please read the trial’s informed consent form. You can also contact the study’s principal investigator for financial-related questions.

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How Do Clinical Trials Work?

Who Can Join a Clinical Trial?

Each clinical trial has rules called eligibility criteria that dictate who can join the study. These include inclusion and exclusion criteria and are set up to preserve the health-related safety of the participants.

Eligibility criteria may include factors like:

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Age
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Prior medications taken
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Cancer stage
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Cancer type
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Eastern Cooperative Oncology Group performance status (measures your ability to complete daily tasks)
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Health history (vaccination record, prior surgeries, comorbidities, active infections)
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Ability to understand and willingness to sign a written informed consent document
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These criteria are located on the trial’s page. If you have questions about the study’s criteria, please reach out to the principal investigator whose contact information is also listed on the trial’s page.

What is the Consent Process of a Clinical Trial?

Every clinical trial is governed by a detailed protocol, which includes the treatment plan, the types of medical tests participants might undergo, the number of participants involved, eligibility criteria, and safety information. An extensive informed consent process is integral to this, where potential participants are educated about the trial's objectives, duration, procedures, all potential risks and benefits, and the confidentiality of their medical records.

If you decide to join, you'll sign a consent form summarizing this information, which you can reference at any time. Importantly, signing the form does not waive your right to withdraw from the study at any point. Informed consent is an ongoing process, allowing for updates on trial progress, emerging side effects, or other risks as they become known.

What are the Phases of Clinical Trials?

Clinical trials are only conducted after preclinical research is finished, a period when the treatment is evaluated not on people. The medicine only moves forward into a clinical trial if there is enough evidence that the therapy has a good chance of helping individuals.

The phases of clinical trials include:

PHASE 0

Phase 0 trials are the first clinical trials that involve people. This phase aims to learn how a medicine is processed in the body, how it affects the body, and whether it reaches cancer cells. A minimal dose of medicine is given to about 10 to 15 people.

PHASE I

This phase is generally tested in a small group of 15 to 30 patients and seeks to find out:

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If the new treatment is safe (fewest side effects)
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The best way to give the new treatment, such as by mouth or by vein, and at what dose
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If there are signs that cancer responds to the new treatment
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PHASE II

Phase II trials are conducted in groups of less than 100 patients to further analyze the safety of medicines and determine whether they work.

PHASE III

The purpose of the phase III trial is to compare the new medicine to the current medicine it could replace. This phase monitors each medicine's side effects and determines which works better. It is tested in hundreds to thousands of patients.

Patients who enroll in a Phase III clinical trial have a chance of being in one of the following randomly selected groups:

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Control group: Receives the current standard treatment
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Study group: Receives the new treatment being tested
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You don’t get to choose which group you are in; this is assigned at random. You might also not know which group you’re in until the trial ends.

PHASE IV

Phase IV trials continue testing new medicines that the FDA has recently approved. The medicine is tested in hundreds to thousands of patients worldwide, allowing for a better understanding of its short—and long-term side effects, safety, and benefits.

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How Long Do Clinical Trials Take?

In general, the amount of time a study takes varies by phase. Other factors like how long it takes to enroll participants and what the study is trying to accomplish can also influence time.

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Phase I: The shortest phase, usually takes less than a year to complete
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Phase II: Often lasts up to two years
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Phase III: Can last up to 5 years
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Phase IV: Can last several years
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Phases II-IV of a clinical trial can often take several years because time is needed to study the long-term effects of a treatment. Your participation in the trial, however, may be shorter than its full duration because participants can join the study at different times.

Am I Allowed to Quit a Clinical Trial?

As a volunteer, you have the freedom to discontinue your involvement in a clinical trial whenever you choose. It is advisable to consult your doctor before making this decision to discuss potential health implications, the safest method to stop the medications, and alternative treatment options available to you. If you find that the clinical trial is not meeting your needs, you may opt to withdraw and explore other trials or different treatment approaches.

How Do I Find a Clinical Trial?

Now that you understand the gist of clinical trials, how do you find one that suits your needs? Strategies may include:

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Ask a cancer specialist about clinical trials you are eligible for
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Review HealthTree’s clinical trial finder by clicking here
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If you are not finding a clinical trial on HealthTree’s site, you can also visit clinicaltrials.gov for a more comprehensive list
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Stay tuned to HealthTree news articles, which cover some of the latest updates on blood cancer clinical trials
\n

Conclusion

Participating in a clinical trial that aligns with your needs may help provide you access to some of the best new therapies that are not readily available to the general public. Your participation can also help researchers and doctors gather data that improves the treatment landscape for other people with cancer.

Access HealthTree’s Clinical Trial Finder

Click the button below to access HealthTree’s clinical trial finder, opening the door to potential innovative treatment options.

Find Clinical Trials

Sources:

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NIH Clinical Research Trials and You
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Deciding to Join a Clinical Trial
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Who Pays for Clinical Trials?
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How Long Does Each Clinical Trial Last?
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NIH Clinical Center: Are Clinical Studies for You?
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The IRB’s Perspective: Determining Optimal Compensation for Clinical Trial Participants

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Myelofibrosis is often traceable by 4 clinical characteristics: bone marrow fibrosis (the development of scar tissue inside bones), anemia, an enlarged spleen, and other disease-associated symptoms. Scientists have linked these symptoms to two important groups of proteins involved in myelofibrosis: JAK/STAT and BET. Normally, these proteins help cells communicate and function properly. However, in myelofibrosis, these pathways malfunction:

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JAK-STAT Pathway: Imagine this pathway as a series of messengers inside a cell. In myelofibrosis, these messengers get stuck in the "on" position, causing the cell to grow and divide uncontrollably.
BET Proteins: These proteins act like switches that control how much of a specific protein is made by a gene. In myelofibrosis, these switches might be malfunctioning, leading to the production of abnormal proteins that contribute to the disease.

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What is Pelabresib?

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Pelabresib is a selective small molecule created to promote anti-tumor activity by regulating particular signals and genes involved in the myelofibrosis pathway. It is designed to inhibit BET proteins and is being studied for the treatment of myelofibrosis and other myeloproliferative neoplasms (MPN).

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The most frequent side effects of pelabresib are fatigue, nausea, constipation, thrombocytopenia (low platelet count), vomiting, febrile neutropenia (a fever and low counts of a white blood cell type called neutrophil), and diarrhea.

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The MANIFEST-2 Trial

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Results from the Phase 3 MANIFEST-2 trial (NCT04603495) with 430 patients who JAK inhibitor-naïve adult patients who received pelabresib in combination with ruxolitinib (this drug has previously been the standard of care for myelofibrosis treatment). MANIFEST-2 is one of the largest studies of myelofibrosis to date.

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Initial Reported Results

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The primary endpoint showed that after 24 weeks, patients showed an average of 66% reduction in spleen volume with the combination compared to ruxolitinib alone. They also reported a 50% reduction in Total Symptom Score [TSS]. These findings indicate that pelabresib and ruxolitinib could potentially revolutionize the initial treatment of this debilitating disease.

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The study also showed:

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An improvement in anemia rates: fewer patients required transfusions.
Improved bone marrow fibrosis by at least 1 point. (Studies suggest the grade of bone marrow fibrosis correlates with a patient’s prognosis.)
Fewer number of disease symptom events.
Plasma levels of inflammatory cytokines were reduced.

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This study continued to monitor patients and will share new, updated, and longer-term results next week at the American Society of Cancer Oncology (ASCO) Annual Meeting. Join the HealthTree for Myelofibrosis community to stay updated!

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SUBSCRIBE TO MYELOFIBROSIS NEWSLETTER

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Learn about ruxolitinib, a non-chemotherapy treatment for people with polycythemia vera (PV).

What is Ruxolitinib?

Ruxolitinib (Jakafi by Incyte) is an FDA-approved Janus Kinase (JAK) inhibitor for adults with polycythemia vera. It is a pill taken by mouth and works by blocking signals that cause cancer cells to multiply. It may also help reduce enlarged spleen size.

How Effective is Ruxolitinib for PV?

Controlling Red Blood Cell Levels

60% of PV patients who took ruxolitinib kept their red blood cell levels (hematocrit) under control without blood draw treatment (phlebotomy).

This is an improvement compared to only 19% of patients taking other treatments who maintained control over their red blood cell levels.

Reducing Spleen Size

40% of PV patients who took ruxolitinib saw at least a 35% reduction in their spleen size. This is an improvement compared to less than 1% of PV patients who took other therapies.

Other Insights of Ruxolitinib for PV Patients

A large research analysis looked at additional benefits and impacts of ruxolitinib for PV patients. The data showed:

Ruxolitinib significantly reduces your risk of developing blood clots in blood vessels (thromboembolism).
PV patients overall have improved symptoms (measured by the Myeloproliferative Neoplasms-Symptom Assessment Form).
Ruxolitinib was, however, linked to increased rates of nonmelanoma skin cancer, anemia, and herpes zoster infections.

What are the Common Side Effects of Ruxolitinib for PV Patients?

Common side effects that may be experienced while taking ruxolitinib include low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea.

To read more about the potential side effects of ruxolitinib for PV patients, click here. If you have concerns about how side effects are managed during treatment, please contact a PV specialist.

Summary

Ruxolitinib is an FDA-approved treatment for polycythemia vera (PV) that helps manage the cancer by controlling red blood cell levels and reducing spleen size. It has shown significant effectiveness in reducing the risk of blood clots and improving PV symptoms compared to other treatments.

There are possible side effects from this treatment, as mentioned above. Contact a PV specialist to discuss how to manage treatment-related side effects.

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

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Sources:

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Myeloproliferative neoplasms (MPNs) are a group of blood cancers that originate in the bone marrow, leading to an overproduction of blood cells. The conditions classified as MPNs include:

Chronic myelogenous leukemia (CML)
Polycythemia vera (PV)
Essential thrombocythemia (ET)
Primary myelofibrosis (PMF)

What Are Interferons?

Interferons are proteins produced naturally by the body to help regulate the immune system, fight infections, and combat cancer. In medicine, interferons are synthetically produced and used as injections or infusions to treat MPNs by slowing the overproduction of blood cells.

Specifically, interferons:

Act as a first line of defense against viruses and cancer by blocking their growth and spread.
Trigger immune cells to identify and destroy abnormal cells.
\"Interfere\" with the multiplication of harmful cells, hence their name.

In the context of MPNs, interferons, such as pegylated interferon (e.g., Pegasys), are commonly used for long-term disease control.

Is There a Shortage of Interferon?

Yes, there is currently a temporary shortage of Pegasys (pegylated interferon alpha-2a). This shortage has been caused by changes in the manufacturing processes at the pharmaceutical company responsible for producing Pegasys. The shortage is expected to continue until July 2025.

It's important to note that interferon alpha-2a (non-pegylated) was discontinued in the United States in 2021, further limiting treatment options.

Healthcare teams, including pharmacists and clinicians, are actively working to manage supplies and identify alternative treatments to minimize disruption to patient care.

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What Are the Alternatives?

The FDA approved Besremi (ropeginterferon alfa-2b-njft) in October 2021, but its approval in the U.S. is limited to polycythemia vera (PV). It is not currently approved for other MPNs such as essential thrombocythemia (ET) or primary myelofibrosis (PMF). However, healthcare providers may consider Besremi for off-label use in specific cases.

What makes Besremi different?

It is a pegylated interferon, meaning it is attached to a compound (polyethylene glycol) that prolongs its effects in the body.
It is injected under the skin every two weeks and is designed for long-term use.
Besremi works by binding to bone marrow receptors, signaling a reduction in the overproduction of blood cells.

Important Note: Interferon therapies, including Besremi, are not suitable for individuals with severe liver disease or autoimmune hepatitis, as these conditions may worsen with treatment.

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Are There Side Effects from Interferon Use?

Interferon therapies, while effective, can have side effects. These include:

Common Side Effects:

Flu-like symptoms: fever, muscle aches, chills, fatigue, headache, joint pain, nausea.
Injection site reactions: bruising, redness, swelling, bleeding.
Hair loss, dizziness, dry mouth, skin changes, and weight fluctuations.

Serious Side Effects:

Heart problems: cardiac arrhythmias, cardiomyopathy.
Organ failure: liver or kidney failure.
Neurological issues: polyneuropathy (nerve damage).
Myelosuppression: decreased bone marrow activity, leading to fewer blood cells.

Patients should report any severe or persistent side effects to their healthcare team immediately.

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Conclusion

The Pegasys shortage has prompted many patients and healthcare providers to consider alternative options. For polycythemia vera (PV) patients, Besremi offers a viable alternative. For other MPNs, such as ET or MF, patients should consult with their specialists to explore tailored treatment options, which may include off-label interferon therapies or other alternatives.

Sources:

Besremi (ropeginterferon alfa-2b-njft by PharmaEssentia) is an FDA-approved medicine used to treat adults with polycythemia vera (PV). It was also recently licensed in October 2024 to help PV patients in Canada.

Learn how Besremi works, how effective it can be, and possible side effects.

What is Besremi?

Besremi is an injectable medicine that treats polycythemia vera (PV). It is a long-acting interferon that works by binding to receptors on bone marrow cells. This signals the bone marrow to produce fewer red blood cells, which helps slow down symptoms of PV like normalizing blood counts, preventing new blood clots, and normalizing spleen size.

Besremi is currently one of the only PV treatments that targets the source of the cancer.

How is Besremi Administered?

You can receive a Besremi injection every three weeks. The starting dosage may differ for adults with PV who are not on hydroxyurea or transitioning from hydroxyurea, known as the titration phase.

How Effective is Besremi for PV?

60% of PV patients achieve remission while taking Besremi. This means their blood counts returned to normal, they didn’t require a blood draw (phlebotomy) in the past two months, their spleen size was normal, and they did not experience any blood clots.

80% of PV patients taking Besremi experienced their blood counts returning to normal.

What are the Side Effects of Besremi?

Possible side effects of Besremi may include decreased blood cell counts, allergic reactions, eye concerns, skin issues, liver effects, and teeth/gum concerns. To review side effect management strategies, please ask your PV specialist.

Conclusion

In summary, Besremi is an FDA-approved medication that targets the source of PV. This, in turn, may reduce PV symptoms such as normalizing blood counts, stopping blood draws, reducing spleen size, and helping patients not have blood clots. Ask your PV specialist if taking Besremi could be right for you.

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

Sources:

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Myelofibrosis (MF) is an advanced myeloproliferative neoplasm (MPN), a rare blood cancer occurring in 2 to 4 people per 100,000 worldwide and from 4 to 6 people per 100,000 within the United States.

People with myelofibrosis can have several significant side effects, leading to a lower quality of life. Some of these side effects include anemia, fatigue, an enlarged spleen (causing the feeling of fullness or discomfort), and/or an enlarged liver, night sweats, bone pain, and itchiness.

People with myelofibrosis often have a shorter lifespan compared to others.

Classifying Myelofibrosis (MF)

To talk about the importance of early intervention in MF, you need first to understand the different ways it can be classified.

Myelofibrosis is compromised of two disease subtypes:

Primary MF (PMF)
Secondary MF

Secondary MF occurs when essential thrombocytopenia or polycythemia vera evolve into myelofibrosis. For more information on secondary myelofibrosis, read here: What Are the Types of Secondary Myelofibrosis?

Primary MF will be the main focus of this article. In 2016, the World Health Organization (WHO) reclassified primary myelofibrosis into two parts:

prefibrotic/early-stage PMF (pre-PMF)
overtly fibrotic PMF (overt-PMF)

Overt-PMF can be classified into different risk-level stages: low, intermediate (int-1/int-2), and high risk.

The term 'early MF' can be confusing in academic literature because it is used in different ways. Some researchers use it to refer to the pre-PMF stage, while others mean the low-risk stage of overt-PMF.

This article will discuss early intervention in overt-PMF.

How is Primary Myelofibrosis Typically Treated?

In many cases, the treatment of low-risk MF includes supportive care and observation, while higher-risk cases qualify for JAK inhibitors, such as ruxolitinib (Jakafi, Novartis/Incyte Corp) or pacritinib (Vonjo, CTI BioPharma), and/or allogeneic stem cell transplantation.

The treatment paradigm for myelofibrosis is different than many other blood cancers, as allogeneic stem cell transplant is the only curative-targeted therapy for patients. Still, many patients do not qualify for it due to advanced age or other comorbidities, which means that for the majority of myelofibrosis patients, therapy options are used only for palliative-type care (symptom reduction, for example) and do not focus on preventing disease progression.

Considerations for Early Intervention in Low-Risk Myelofibrosis

Currently, low-risk myelofibrosis supportive care can include medications that help the body produce more red blood cells (erythropoiesis-stimulating agents) and others that stimulate the bone marrow to produce more white blood cells/neutrophils (granulocyte colony-stimulating factors), transfusions, danazol (a hormone-affecting steroid) and immunomodulatory treatments.

Normally, people with early-stage myelofibrosis are told to watch and wait for disease progression. While some people with myelofibrosis can quickly progress from pre-PMF to overt-PMF, indicating a high-risk disease, some patients can live for years without significant symptom burden.

For those with few symptoms and low-risk genetics, treatment for myelofibrosis may present more side effects than the disease itself. However, treatment could still be beneficial if it leads to increased overall survival.

People with low-risk genetics may experience more side effects from treatment than from myelofibrosis.
Despite this, treatment could offer an advantage by potentially increasing life expectancy.

In other cases, individuals with low-risk myelofibrosis may experience debilitating symptoms that make the treatment necessary to control their disease and potentially improve their prognosis.

Some with low-risk myelofibrosis may still have severe symptoms that impact quality of life.
For these patients, treatment can help manage symptoms and possibly alter the disease course.

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What Are the Benefits of Early Intervention in Myelofibrosis?

When active treatment is given to myelofibrosis patients within 12 months of their diagnosis, they have significantly lived longer and experienced fewer disease symptoms than those who receive treatment later.

Benefits of early intervention and treatment include:

Fewer cytopenias (less anemia/low blood counts)
Improvement in spleen reduction
Longer overall survival

Patients who start treatment earlier experience higher responses to the treatment and lower toxicity than people starting treatment in a more advanced stage of myelofibrosis.

Another benefit to earlier treatments is that they can better position patients to remain at an optimal dose for longer periods of time.

What Are Challenges to Early Intervention in Myelofibrosis?

When you decide to start treatment for myelofibrosis at earlier stages, such as pre-PMF or low-risk MF, there are a few important factors to consider.

First, it’s crucial to get an accurate diagnosis of your myelofibrosis stage. A 2020 study found that about 40% of patients are misclassified in terms of risk, and an additional 30% don't receive any risk categorization at all.

Once your myelofibrosis is correctly diagnosed, the next step is to set clear treatment goals. Consider whether the symptoms of myelofibrosis significantly affect your quality of life and whether you’re aiming for a longer life span.

Ultimately, it is up to the individual and their provider to decide whether or not to move forward with treatment.

Notably, Dr. Prithviraj Bose, an MD Anderson lymphoma doctor specializing in myelofibrosis, shares,

\n
“There is little to no benefit to delaying active treatment in patients with symptomatic lower-risk… MF.”
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Future Outlook and Conclusion

Thankfully, there are many active clinical trials enrolling low-risk myelofibrosis patients in their cohorts. Subanaylses of these populations within those trials can continue to reveal more about how to move forward with earlier treatment in low-risk and pre-fibrotic primary myelofibrosis.

While earlier intervention does take careful consideration on part of the healthcare provider, it can have significantly positive effects on those with low-risk myelofibrosis and should be seriously considered for those patients who are interested in being treated.

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If you would like to learn more about myelofibrosis risk stratification or prognosis, check out our HealthTree 101 below:

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Sources:

","language":"EN","metaDescription":"Explore essential factors for early myelofibrosis treatment, including accurate diagnosis and setting clear goals based on your symptoms and life expectancy.","metaTitle":"Early Myelofibrosis Treatment: Key Considerations","publishedAt":{"_type":"Date","value":"Tue Sep 17 2024 04:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"Early myelofibrosis treatment, Myelofibrosis diagnosis, Myelofibrosis treatment goals, Low-risk myelofibrosis therapy, Myelofibrosis symptoms management, Pre-PMF treatment options, Myelofibrosis survival rate, Myelofibrosis risk classification, Myelofibrosis quality of life ,Myelofibrosis treatment effectiveness","slug":"early-intervention-in-myelofibrosis","status":"ACTIVE","title":"Why Does Early Intervention in Myelofibrosis Matter? ","updatedAt":{"_type":"Date","value":"Thu Sep 19 2024 21:43:08 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:53 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"new-in-myeloma","sectionConfig":{"news":{"description":"Our Treatment Advances articles cover treatment option updates, new combinations of treatments, FDA approval news, and more.","metaDescription":"It's important for patients to stay up-to-speed on advancements in their cancer because the treatment options are rapidly changing.","metaTitle":"Treatment Advances - HealthTree Foundation","order":1,"tileOrder":1,"type":"LARGE_TILE"}},"sections":["NEWS"],"slug":"treatment-advances","status":"ACTIVE","title":"Treatment Advances","updatedAt":{"_type":"Date","value":"Fri Apr 12 2024 20:21:03 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"},"snapshot":{"exists":true,"id":"haqKTOi9lG4MNU3rNLG6","ref":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"}}}},"ref":{"_type":"DocumentReference","path":"apps/community/articles/GJ7F61kBBhXkuHcabXpj"},"snapshot":{"exists":true,"id":"GJ7F61kBBhXkuHcabXpj","ref":{"_type":"DocumentReference","path":"apps/community/articles/GJ7F61kBBhXkuHcabXpj"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NRcFf0ATixvpHmsyX2JM"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/haqKTOi9lG4MNU3rNLG6"},"createdAt":{"_type":"Date","value":"Thu Aug 08 2024 22:13:34 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"diseases":[{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/myeloproliferative-neoplasm"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2FINTERFERON_16983f5d-a604-417d-ac49-ac495f741ced.jpg?alt=media","htmlContent":"

What Are Interferons?

\n\n

Interferons are proteins that are crucial to the body's immune response. They help regulate the immune system and have effects that can modify certain diseases. For over 35 years, interferons have been used to treat a group of blood cancers known as myeloproliferative neoplasms (MPNs), which include polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (PMF).

\n\n

The interferons currently available are:

\n\n

Peginterferon alfa-2a (Pegasys, Genentech)
Ropeginterferon alfa-2b (BESREMi, PharmaEssentia)

\n\n

How Do Interferons Work?

\n\n

Interferons work by binding to specific receptors on the surface of cells. This binding triggers a series of actions inside the cell that help control and reduce the abnormal growth of blood cells. In particular, they can help reduce the number of mutated cells.

\n\n

Their specific mechanism of action is focused on three main functions:

\n\n

Inducing Apoptosis: They help in the programmed death of abnormal cells, including mutated blood stem cells.
Modulating the Immune System: They enhance the body's immune response against abnormal cells.
Depleting Mutated Cells: This targets cells with specific mutations, like JAK2 V617F, which is common in MPNs.

\n\n

How Are Interferons Administered?

\n\n

Interferons can be administered intramuscularly (injected into the muscle), subcutaneously (injected into the layer between fat and skin), or intravenously (injected into the vein by a trained health professional).

\n\n

What Are the Side Effects of Interferon Therapy?

\n\n

The initial use of interferons was challenging due to side effects. These issues have been improved by attaching a substance called polyethylene glycol (PEG) to the interferons, which increases interferon stability, prolongs their activity in the body, and reduces immune reactions.

\n\n

There are, however, common side effects patients may experience while taking interferon therapy, such as:

\n\n

Fatigue
Flu-like symptoms (fever, chills, muscle aches)
Depression
Anemia (low red blood cell count)
Neutropenia (low white blood cell count)
Thrombocytopenia (low platelet count)
Injection site reactions

\n\n

Managing interferon-based therapies requires careful monitoring and sometimes switching from other treatments like hydroxyurea. Early interferon treatment can lower the risk of complications and slow disease progression.

\n\n

With ongoing research focused on improving interferons' effectiveness and reducing their side effects, these therapies offer hope for better disease control and potentially longer periods of remission for patients with myeloproliferative neoplasms.

\n\n

In conclusion, interferons are a significant treatment for myeloproliferative neoplasms, offering patients a more stable and tolerable option. With continued research and refinement, they hold the potential for even better outcomes in the future.

\n\n

Be your best self-advocate with HealthTree, by staying informed about your disease and reading our comprehensive updates!

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CREATE MY FREE ACCOUNT

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Source:

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Myelofibrosis is a type of cancer that affects the bone marrow's ability to generate new blood cells caused by scar tissue within the marrow. This condition is due to various reasons, with primary causes due to mutations within bone marrow cells.

\n\n

As a result of bone marrow scarring, common symptoms arise including low blood cell counts like anemia (low red blood cell counts), enlarged spleen or enlarged liver which can reduce life expectancy in myelofibrosis patients.

\n\n

Other symptoms that can negatively impact myelofibrosis patients’ quality of life include fatigue, stomach discomfort, night sweats, bone pain, and itching.

\n\n

What is “Early” Myelofibrosis?

\n\n

The concept of “early” or prefibrotic primary myelofibrosis comes from changes in the bone marrow that precede fibrosis but have not fully changed to fibrosis.

\n\n

The WHO classification includes a distinct category for early/prefibrotic primary myelofibrosis (a diagnosis made only after analyzing a biopsy sample).

\n\n

Patients with myelofibrosis are risk-stratified, often into low, intermediate-1 (int-1), int-2, or high-risk disease.

\n\n

“Early Myelofibrosis” is a concept that can be defined in two general ways:

\n\n

Risk of death (this risk is determinedwith genetics and baseline health at diagnosis)
Disease duration (how long have these changes taken place in the bone marrow)

\n\n

How is Early Myelofibrosis Treated?

\n\n

Since early myelofibrosis refers to changes in the bone marrow that have the potential to progress to bone marrow fibrosis but are not fibrotic yet, the recommendations are to treat them as soon as possible.

\n\n

Multiple studies have shown that treating myelofibrosis as soon as possible after diagnosis can be beneficial to patients. This results in more effectiveness and lower toxicity compared with treating it later in the disease course.

\n\n

What are the Treatments for Early/Prefibrotic Primary Myelofibrosis?

\n\n

Ruxolitinib has shown promising results in patients who start an early treatment when a prefibrotic process in their bone marrow is detected. Some of the findings are very interesting:

\n\n

Ruxolitinib can improve patients’ overall survival rate
Ruxolitinib reduced symptom severity after 4 weeks of treatment, improving quality of life in patients
After 6 months of treatment, patients had a reduction in the previously enlarged spleen
Patients experienced better blood cell counts (improved anemia and platelet counts)

\n\n

Therapy with Interferon alfa-2a can also be used for myelofibrosis, mainly in patients without enlarged spleen or symptoms, and can reduce bone marrow fibrosis and improve treatment response in patients without high-risk mutations.

\n\n

Combination treatment with ruxolitinib and interferon alfa-2a is also an option for certain patients with myelofibrosis. The phase 1/2 Ruxopeg study showed that this combination is well tolerated and helped reduce the spleen size and reduce mutational changes.

\n\n

Myelofibrosis is considered a chronic condition, with the only curative option being a hematopoietic stem cell transplant. Several therapies have been developed and are available to extend the overall survival of myelofibrosis patients, like ruxolitinib, which can also improve symptoms caused by myelofibrosis and extend life expectancy.

\n\n

Expanding treatment options for all patients and discovering the best time to start treatment is possible thanks to research. This is why it is very important to continue active research on early myelofibrosis patients so that their progression can be prevented one day.

\n\n

If You Want to Stay Updated With Myelofibrosis Treatment Advances, Join Our Newsletter!

\n\n

Sources:

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\n","language":"EN","metaDescription":"Learn about the benefits of early intervention and treatment advances for early primary myelofibrosis.","metaTitle":"What is Early Myelofibrosis?","oldAuthor":{"_type":"DocumentReference","path":"apps/community/authors/BANfdBZBGN5oteDMVxCY"},"publishedAt":{"_type":"Date","value":"Tue Jun 18 2024 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"myelofibrosis, myelofibrosis what is it, symptoms of myelofibrosis, mf blood cancer, myelofibrosis bone marrow, myelofibrosis symptoms, causes of bone marrow fibrosis, mf cancer, mf medical, what causes myelofibrosis, is myelofibrosis a cancer, is myelofibrosis cancer, what are the first symptoms of myelofibrosis, myelofibrosis disease, fibrosis in bone marrow causes, causes of myelofibrosis, overactive bone marrow, signs that myelofibrosis is progressing, bone marrow fibrosis causes, what is bone marrow fibrosis, what is death from myelofibrosis like, cutaneous myelofibrosis, how rare is myelofibrosis, myelofibrosis cause, can you die from myelofibrosis, end stages of myelofibrosis, bone fibrosis, myelofibrosis symptom, rare bone marrow disease, stages of myelofibrosis, end stage myelofibrosis, myelofibrosis blood cancer, myelofibrosis causes, living with myelofibrosis, myelofibrosis stages, is myelofibrosis leukemia, early myelofibrosis, prefibrotic primary myelofibrosis, prefibrotic mf, primary mf, ppmf, ","slug":"what-is-early-primary-myelofibrosis","status":"ACTIVE","title":"What is Early Primary Myelofibrosis?","updatedAt":{"_type":"Date","value":"Tue Jun 18 2024 19:25:47 GMT+0000 (Coordinated Universal Time)"}},"included":{"category":{"data":{"createdAt":{"_type":"Date","value":"Thu Jul 07 2022 16:34:53 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/leukemia"},{"_type":"DocumentReference","path":"diseases/E7FvorVuNJjGzy9wH7fy"},{"_type":"DocumentReference","path":"diseases/chronic-myelomonocytic-leukemia"},{"_type":"DocumentReference","path":"diseases/hodgkin-lymphoma"},{"_type":"DocumentReference","path":"diseases/non-hodgkins-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"}],"migratedReason":"global-community","migratedReason2":"fix global-community categories","migratedSlug":true,"oldSlug":"new-in-myeloma","sectionConfig":{"news":{"description":"Our Treatment Advances articles cover treatment option updates, new combinations of treatments, FDA approval news, and more.","metaDescription":"It's important for patients to stay up-to-speed on advancements in their cancer because the treatment options are rapidly changing.","metaTitle":"Treatment Advances - 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Important Changes to Medicare, Federal, and Private Drug Plans for 2025

Starting January 1, 2025, there will be significant changes to Medicare and other insurance plans' coverage of formulary vs. non-formulary drugs. If you’re unfamiliar, a formulary is the list of medications that your insurance plan covers, often organized by tiers that affect how much you pay. Drugs not on the formulary (non-formulary drugs) are not covered at all, meaning you’ll have to pay the full cost out-of-pocket.

It’s critical for all enrollees to review their prescription coverage to see if their medications have moved to different tiers or are no longer on the formulary. This could include essential high-cost cancer drugs, which may no longer be covered or be covered at a lower rate by some Medicare Advantage, Part D Drug Plans, or other insurance plans.

If your plan no longer covers these medications, you have until December 7th for Medicare and Medicare Advantage—the end of the open enrollment period—to explore other plans. If no plan in your area provides coverage, work with your doctor now to request an exception for \"medically necessary\" drugs. If covered by federal or private insurance, be aware of your open enrollment period to not miss any deadlines. Being proactive can help you avoid disruptions in your treatment.

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How the Changes Affect Blood Cancer Patients

If any cancer treatment drugs are excluded from your specific plan, you’ll be required to pay the full price out-of-pocket. Consider asking for a generic of the drug if possible. Additionally:

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Costs for non-formulary drugs won’t count toward your maximum out-of-pocket (MOOP) limit of $2,000.
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\n
The MOOP cap only applies to prescriptions covered by your plan.
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If you’re a blood cancer patient on other drugs (outside of cancer treatment), you should also review your plan for potential coverage changes. Each plan determines its own prescription coverage, so there’s little consistency across plans.

What About Private Insurance Plans?

If you’re on private employer-sponsored insurance, ACA, or COBRA, don’t assume your coverage hasn’t changed for 2025. Private plans are also undergoing substantial shifts, and many people will be affected. Review your options carefully to ensure your medications are still covered.

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What You Can Do Now

Here are steps you can take to prepare for these changes and ensure continued access to your medications:

Understand Formulary vs. Non-Formulary Drugs: A formulary is your plan’s list of covered medications. Drugs on the formulary may be divided into tiers, with higher tiers often costing more. Non-formulary drugs are not covered by your insurance plan, meaning you’ll have to pay their full price out-of-pocket. Review your plan to determine which tier your medication falls under or if it’s covered at all.
Review Your Plan Changes: You should have received a Summary of Plan Changes in September. Read it carefully and identify any potential issues with your coverage.
Contact Your Insurance Provider: Contact your plan for details about drug coverage changes, including alternatives like generics.
Work with Your Doctor: Discuss with your healthcare provider to request prior authorizations or exceptions for \"medically necessary\" prescriptions.
Don’t Wait: Avoid finding out about coverage issues at the pharmacy. Start now to prevent treatment gaps.
Ask for an Alternative: If your prescribed drug is not in your Plan formulary, request a generic if possible. Still, check to make sure it is also a Plan formulary-covered drug.

Seek Assistance If Needed

If you’re overwhelmed by these changes, you’re not alone. You can reach out to your State Health Insurance Assistance Program (SHIP) for guidance. Visit www.shiphelp.org to speak with a counselor in your state.

Another helpful resource is CMS.gov, which can help you review your Medicare plan.

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Act Now to Avoid Catastrophic Costs

Failing to act during this enrollment period could have devastating financial consequences, especially if you rely on expensive medications. Remember, this year’s changes are substantial, and your 2024 coverage details will not apply in 2025. Be proactive to secure the best plan for you and your family.

Extra Resources on the Subject:

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In the United States, approximately 1.63 million people are either living with or are in remission from blood cancers such as leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPNs). An equal or greater number of individuals serve as care partners for these patients. Being a care partner is often motivated by deep affection, yet it can lead to significant stress.

As a care partner, you might experience stress symptoms such as feeling overwhelmed or anxious, fatigue, irritability, a loss of interest in previously enjoyed activities, or physical health issues. These issues typically arise from the challenges of balancing your loved one's needs with your own.

If you notice any of these stress indicators, consider the following advice from fellow blood cancer care partners on how to reduce burnout.

Eight Tips to Reduce Caregiver Burnout

Blood cancer care partners shared the following tips for how they reduce burnout while supporting their loved one.

Set boundaries with the patient around what they want help with. Even if it is out of love, be willing to let go of nagging them on areas they don’t want help with.
Get outside (weather permitting). Go for a walk, run, bike ride, garden, or just a break sitting outside and breathing in the fresh air.
Show yourself compassion about the learning curve. Don’t try to cram all the information in at once. If you get a specialist on your team, trust their input up front, and you can learn more about the cancer over time.
Give yourself the validation that it is okay to take frequent breaks from thinking about cancer. Spend time doing a hobby you would have enjoyed pre-diagnosis.
Keep up with your own health care. Putting your health first will help reduce resentment. Your well-being will also impact your ability to care for others.
Take a break from depressing social media posts. Also, when searching for information, seek it out from credible sources, such as specialists.
Even if you feel like you need to be strong for your loved one, you need to take time to feel your emotions. Otherwise, they will build up over time and negatively impact your health. Seek out a mental health professional to support you as needed.
Even though there are bad days, when the good moments come, give yourself permission to enjoy those too. It does not all have to be doom and gloom.

Conclusion

In summary, when supporting someone with blood cancer, it's important for care partners to actively manage their own stress and well-being. To reduce burnout, care partners suggested tips like setting clear boundaries, maintaining personal health, and allowing space for emotional processing. This enables you to not only preserve your own health but also enhance your ability to provide compassionate assistance to your loved one.

Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

If you would like to share your story or tips about being a blood cancer caregiver, please email info@healthtree.org.

Sources:

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Everyone should consider the importance of estate planning. Preparing for the distribution of your assets ensures that your financial and personal affairs are managed according to your wishes in case of incapacity. Taking these steps ahead of a crisis can provide both emotional and financial benefits.

It's important to consult with an attorney who specializes in estates, especially if your situation is complex, such as having a blended marriage or caring for a special needs individual.

Disclosure: I am only providing an overview of estate planning. Please consult with an attorney to address specific concerns you may have.

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What Is an Estate?

An estate, simply, is everything that you own that is in your name. Your estate is responsible for any debt owed at your death.

It is important to prepare well in advance. This planning will help you feel more secure about your future and confident that your loved ones will be taken care of after you pass.

Many people don’t understand that estate planning can assist you in tax mitigation before death.

Many of the issues that can be addressed in an estate plan are:

Providing for a spouse or children
Preserving assets for future generations
Supporting your favorite charity
Ensuring all of your assets that pass through a beneficiary designation will be distributed per your wishes
Minimize taxes and expenses
Ensuring the persons you name to handle your estate or make decisions on your behalf are put on record
Make sure your heirs can manage their wealth or have a resource to assist them in place
Ensure that anyone you are responsible for financially, such as those with special needs, is taken care of
Assure that anyone you want to leave assets to is assigned, including entities such as charities
Allow you to provide protection of assets from ex-spouse/s or creditors

An estate plan can help you understand and mitigate tax ramifications to your assets before and after your death. This specifically refers to Federal Gift taxes and Generation-skipping transfer taxes.

Common Documents and Descriptions for the Estate Plan

Here are the most common documents and descriptions of the documents used to help you carry out an Estate Plan:

Will: This is a legal document used to outline how you want your assets and property to be distributed after you die. It can also help you name guardians for your children, dependents, or pets, as well as the person (executor) who will handle these affairs after your death.
Durable Power of Attorney: Allows you to name someone (agent) to handle your financial affairs if you’re unable to do so.
Power of Attorney for Healthcare: It allows you to appoint a trusted family member or friend to make decisions about your medical care if you are unable to make them yourself.
Privacy Releases: These are documents that are offered to you when seeking medical attention. It gives permission for someone on your behalf to access information and documents necessary to represent you in healthcare matters. Many healthcare POAs have this included. Check with your healthcare providers, as they may have their own privacy waivers.
Living Will (Advanced Medical Directive): This document requires careful thought when naming someone to make decisions on your behalf with your healthcare providers as to how you are to be medically treated when you are unable to make the decisions yourself.
Trust: There are many types of trust to help you manage your assets. They are often used as part of an estate plan to help minimize or eliminate transfer taxes, as well as other opportunities unrelated to taxes to help solidify an estate plan.

What Happens If You Die Without Any of These Documents?

If you don’t have a will when you die, it is considered intestate. In this situation, the intestate laws of your resident state will determine how your estate will be distributed. This could be a concern if you have an ex-spouse or blended marriage with children.

Estate planning can also include Legacy Planning/Planned Gifts. You can include your desire to donate to your favorite charity in your estate plan. If you want to include gifting in your plan, careful consideration as to what, whom, and when you should give is very important.

Some gifts provide life-long income to the donor, while other gifts use estate and tax planning to provide for charity and heirs in ways that can maximize the gift and/or minimize its impact on the donor’s estate. Other planned gifts can be simple charitable gifts through a will or a trust.

There are three types of planned gifts:

Outright gifts that are given of appreciated assets, such as stocks as a substitute for cash
There are gifts that return income or other financial benefits to the donor in return for the contribution
Gifts that are donated after the death of the donor

Charitable gift annuities make fixed payments to the donor starting at either the time of the gift (immediate-payment gift annuity) or payments at a later date(deferred gift annuity). Depending on the organization to which these are donated, the funds can be pooled (comingling of donations) together with other donated funds and pay beneficiaries through the variable spending on the earnings of the fund. They generally operate very much like a charitable mutual fund.

Charitable remainder unitrust and annuity trust are individually managed trusts that pay beneficiaries either a fixed percentage of trust income or a fixed dollar amount.

A huge benefit of gifting is the tax benefits to the donor depending on the type of gift:

A donor can realize a charitable deduction for the real market value of the asset where the donor will not pay capital gains tax on the transfer of the appreciated asset, such as securities or property.
A tax benefit to the donor can be realized for donated life-income gifts. The donors will receive an income tax deduction for the full, fair market value of the assets contributed minus the present value of the income interest retained. If the gift is appreciated property, they pay no upfront capital gains tax on the transfer.
Bequests are gifts donated at the donor's death, such as a life insurance policy or a retirement account. They don’t generate a lifetime income tax deduction for the donor; however, they are exempt from estate tax.

You don’t have to be rich to give, but many people will donate vehicles, art, or other property as it enables them to give to the charity they have an emotional tie to more than they can otherwise give.

When considering estate planning and/or legacy planning, it is recommended that you work with your financial and tax professionals, as well as your estate attorney, to make sure you have all of the required documents needed to manage your affairs in the event you cannot while living and to manage the distribution of your estate the way you want it distributed after your death.

They will also help you manage the gifting and maximize the tax benefits while minimizing tax consequences.

Triage Cancer is a good place to start educating yourself and finding the resources you may need to start the process.

HealthTree has information to help you understand Estate and Legacy planning and provide you with opportunities to include the HealthTree Foundation in your planning. Learn more here: Legacy Giving

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People with myelofibrosis often experience decreased red blood cells (anemia).

A consensus program led by 9 specialist hematologists was conducted between March and September 2023. The program's other members included 20 hematologists and 9 patients. The hematologists were from Europe, the United States, Canada, Australia, Israel, and India.

One of the points from their discussion that we'll focus on in this article is how to treat myelofibrosis-related anemia. Read their insights below.

Why Does Anemia Happen for Myelofibrosis Patients?

Anemia is a condition characterized by a low number of mature red blood cells, which are responsible for transporting oxygen to various parts of the body. A deficiency in these cells can lead to symptoms such as fatigue.

In the case of myelofibrosis, a mutation in the stem cells (which normally develop into different types of blood cells) leads to the production of a large number of ineffective blood cells. This accumulation fills the bone marrow with scar tissue and increases chronic inflammation.

Due to this compromised state of the bone marrow, it becomes difficult for it to produce new, healthy blood cells, such as red cells. Because of this, the spleen may attempt to compensate by producing blood cells, which can cause it to enlarge.

Many strategies exist for improving low red blood cell counts. Read about the methods agreed upon in the consensus program to alleviate myelofibrosis patients’ anemia.

When Should Anemia Treatment Start for Myelofibrosis Patients?

Treatment for anemia that does not involve red blood cell transfusions should be started or adjusted based on specific conditions. Treatment is generally considered when hemoglobin (a protein in red blood cells that carries oxygen) falls below 10 grams per deciliter.

How Should Anemia Be Managed if Caused by Myelofibrosis or its Treatments?

Management of Treatment-Related Anemia

Some myelofibrosis treatments may cause anemia. If this is the case, your doctor may recommend reducing the current therapy dose for 4 to 6 weeks to manage the anemia.

Management of Myelofibrosis-Related Anemia

For myelofibrosis-related anemia, your doctor may consider using a range of current and emerging treatments alone or in combination. These include JAK inhibitors like momelotinib or pacritinib, medications such as danazol, luspatercept, erythropoietin-stimulating agents (ESAs), and immunomodulatory medicines (IMiDs).

In severe cases where other treatments have failed, surgery to remove the spleen (splenectomy) may be considered.

One thing to note is that JAK inhibitors are the only officially FDA-approved treatment for myelofibrosis. Although the other treatments mentioned can help improve anemia for myelofibrosis patients, they are not yet FDA-approved for this specific purpose.

See the below tables to learn more about these treatments.

The first table shows the current anemia treatments for myelofibrosis and how they work.

\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 Current Treatments \n	\n How it Works \n
\n Red blood cell transfusion \n	\n Receive an infusion of donor red blood cells to normalize levels \n
\n Recombinant ESA (erythropoiesis-stimulating agents) \n	\n Activate signals that create red blood cells \n
\n Danazol (androgens) \n	\n Stimulates the production of red blood cells \n
\n Remove the spleen (splenectomy) \n	\n Remove the spleen if it gets too big from trapped blood cells \n
\n Immunomodulatory (IMiD) treatments like thalidomide, lenalidomide, and pomalidomide \n	\n Helps the body produce red blood cells \n
\n JAK inhibitors like ruxolitinib, fedratinib, pacritinib, and momelotinib \n	\n Prevents overactive JAK signaling seen in myelofibrosis cells. Helps reduce spleen size \n

This next table shows emerging anemia treatments for myelofibrosis (those in clinical trials) and how they work.

\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 Emerging Treatments in Clinical Trials \n	\n How it Works \n
\n Luspatercept and KER-050 (TGF-β ligand traps) \n	\n Helps young red blood cells mature \n
\n Pelabresib (epigenetic modulators) \n	\n Reduces inflammation in the bone marrow to reduce anemia \n
\n PRM-151 (antifibrotic agents) \n	\n Reduces bone marrow scarring seen in myelofibrosis and supports the body’s regulation process of red blood cells \n
\n Imetelstat (telomerase inhibitors) \n	\n Helps red blood cells produce normally \n
\n Navitoclax (BCL-2/BCL-xL inhibitors) \n	\n Halts red blood cells from self-destructing to maintain mature red blood cell levels \n

If you are interested in receiving one of the emerging anemia treatments for myelofibrosis in clinical trials, click the above link to review your eligibility. Some trials may be actively recruiting, whereas others are not. If you have questions about how clinical trials work in general, click here.

Summary

Myelofibrosis patients are often affected by anemia, a condition in which there are lower-than-normal red blood cells. Treatment options for myelofibrosis-related anemia include JAK inhibitors and emerging therapies in clinical trials. Consult with your myelofibrosis specialist to explore the best treatment strategy for you.

If you don’t have a myelofibrosis specialist, consider adding one to your healthcare team today: Myelofibrosis Specialist Directory.

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Myelofibrosis Newsletter

Sources:

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Blood cancer care partners brainstormed ways their communities can support them in effective ways. Read their ideas below to learn how you can support blood cancer care partners and what to think twice about before doing so.

Caregivers, share this article with your loved ones so they know how they can help!

Ways to Help Blood Cancer Caregivers

Unspoken Simple Tasks

Sometimes, the most meaningful acts of service include simple actions that care partners weren't even aware they needed.

These could include:

Bringing in/out the trash or recycling bins on trash day
Shoveling snow
Bringing gift cards (or, when requested, food)
Treat drop-offs to let you know you were thinking of them
Mowing the lawn

Pre-Arranged Tasks

If you know of a loved one who is taking care of someone with blood cancer, consider offering to do one of these pre-arranged tasks.

Rides to treatment
Errands/chores
Sunshine basket (care baskets with crosswords, hygiene products, snacks, etc. for hospital stays)
Freezer/crockpot meals
Take care of pets
Pick up prescriptions
Sign up for UPS/FedEx deliveries requiring signatures
Make hotel and flight reservations
Negotiate price with airline due to \"medical flight\" status
Help resolve insurance issues

Perhaps one of the most important things that you can do for care partners is arrange time for them to take care of themselves. Ask if you can spend time with the patient so that they can participate in activities such as:

Nail appointments
Hair/spa appointments
Walks or other forms of exercise
Movie

Spiritual Check-ins

If appropriate and applicable, you might want to consider checking in with your friends and family who are care partners and ask how they are doing spiritually. Be careful not to come off as condescending, and be sensitive to the fact that some people might be going through a faith crisis after being diagnosed with cancer.

You could consider:

Checking in with people from your religious circle
Sharing you are praying for them and ask if there are any specific prayer requests they have
Share inspiring and comforting scriptures to remind them they are not alone

Mental Health Check-ins

Check in with your loved ones' care partners to make sure they are doing well mentally and emotionally. Even when the care partner has a positive attitude, the role can be lonely and draining. Knowing you have a strong support system who is checking in on you is very helpful.

Consider sharing the following:

Share encouraging words
Validation of emotions: Letting the caregiver know it's ok to feel the way they feel
Keep them included: Even if they're not available, keep inviting them to book clubs, parties, dinners, and get-togethers so they feel included
Care plan: Create checklists for them to ensure they are taking care of themselves. Supportively hold them accountable for their own health
Be an ear to vent to
Remember important days and “celebrate” or acknowledge them
Do a non-cancer activity together (stream a movie, craft, play games, etc.)
Shared caregiving responsibilities like loved ones taking “shifts” to care for patients in/out of the hospital

Think Twice Before Doing This for Caregivers

While we know that you have good intentions, you may want to think twice before doing the following when trying to help blood cancer care partners:

Pushing food or delivering food without asking
Sharing unwanted/unasked-for medical advice
Sharing doubt about diagnosis
Sharing horror stories about diagnosis or other sicknesses/cancers

When in doubt, ask the care partners you would like to help and what would be most helpful. Come up with ideas to help, and ask them if they would feel comfortable with that in their lives at this time.

While improving the quality of life of blood cancer patients is important, let's also work to improve the lives of blood cancer care partners.

Summary

Blood cancer care partners shared insightful ways their community can offer practical and emotional support to enhance their caregiving roles. Effective help can range from performing simple, often overlooked tasks like mowing the lawn or taking out the trash to more involved assistance such as managing errands, offering rides to treatment, or even arranging self-care opportunities for the care partners themselves.

Additionally, it's important to approach support with sensitivity, avoiding imposing food or unwanted advice and instead focusing on meaningful, consented assistance that respects the care partner's needs and preferences.

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Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

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Being a care partner to a blood cancer patient, no matter where they are in their journey, can be overwhelming. It adds more roles and responsibilities to your already busy schedule. You serve out of love, but there is no denying that wearing all of the hats that a caregiver brings can be exhausting at times.

Learn insights on managing this role.

How Can the Caregiver Role Change?

At the beginning of a blood cancer diagnosis, many caregivers wonder what their role will look like in the upcoming years. The truth is these roles can differ based on the age of the patient, the treatments that they receive, and the status of the cancer.

For example, older patients might require a ride to their treatment appointments, while younger patients can usually drive themselves. Younger patients might need several reminders to take their medication, while older patients remember to take it with their other daily medications. Many patients benefit from having someone to talk to or a shoulder to cry on.

Sometimes, your role as a caregiver can include being a walking/exercise partner. Other times, it can include being an appointment keeper or secretary at certain appointments.

It could be as simple as picking up the slack when the patient feels fatigued or helping them manage heightened emotional states caused by treatments. If you are noticing a significant change in your loved one’s emotional state as a result of treatment, talk with your cancer specialist about your concerns.

Tips for Managing the Caregiver Role

Maci Chance, a blood cancer care partner, shared the following advice for others in similar roles. Watch the video below or read the summary highlights to learn her advice:

Instead of focusing on balance, go where you are most needed. At different times in the cancer journey, you will be required to spend more time in some areas of your life than others. For example, Maci was a full-time working mom and partner to Tad. During Tad's stem cell transplant, she was able to take a sabbatical from work to concentrate on the mother and partner/caregiver roles in her life. She has since returned to work but emphasized the need not to try to search for balance but rather go where you are most needed. It requires sacrifice, but it is worth it not to burn out in all areas of your life.

Therapy can be a lifesaver. Having an uninvolved third party to talk about your frustrations and concerns can be incredibly helpful. This is a stressful time, and you deserve the chance to process your grief and worry with a trained professional who can help you. Ask the social worker at your center or your general practitioner for recommendations. You can also call your insurance to see who/what they cover within your network. You are worth finding a good, helpful therapist!

Don't be afraid to ask for help. It might be hard to let go of the \"control\" that you feel, but by asking for help, you are taking care of yourself. Perhaps someone else could take your mother to her treatment appointment, your neighbor can pick up her groceries, or your brother can take a turn sleeping over at her house after her stem cell transplant. Asking for help allows you to better serve in the future.

Summary

Being a care partner for a blood cancer patient involves adapting to changing roles and significant responsibilities that can vary depending on the patient’s age, treatment, and condition. Care partners are encouraged to manage their duties without seeking perfect balance but by prioritizing needs and making sacrifices where necessary. It’s crucial for caregivers to acknowledge the emotional toll of their role, seek professional support, and not hesitate to ask for help to maintain their well-being and effectiveness in caregiving.

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Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

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Out of the many myelofibrosis research publications presented at the 2024 ASH conference, read about some of the highlights. Stay tuned for coverage of these topics at HealthTree Conference Coverage in the coming weeks.

New Myelofibrosis Treatments

In a morning session hosted on Sunday, December 8th, titled “Myeloproliferative Syndromes: Clinical and Epidemiological: JAK Inhibitors in MPDs, Novel Insights, and Next-Gen Agents,” some of the topics about new myelofibrosis treatments included:

How effective and safe is fedratinib (Inrebic by BMS) for people with myelofibrosis who have low platelets?
If you have previously relapsed or become refractory to a JAK inhibitor, how effective is the MDM2 inhibitor navtemadlin (by Kartos Therapeutics)?
If ruxolitinib (Jakafi by Incyte) stops working, how effective is rovadicitinib (by Chia Tai Tianqing Pharmaceutical)?
How safe and effective is the next-generation JAK2/FLT3 inhibitor called flonoltinib maleate (by Chengdu Zenitar Biomedical Technology)?

Advancements in Treating Myelofibrosis

In an evening session on Monday, December 9th, titled “Myeloproliferative Syndromes: Clinical and Epidemiological: Advancing MPN Care Innovative Therapies and Clinical Breakthroughs in Myelofibrosis,\" several of the topics included:

People with myelofibrosis experienced improved blood counts and other benefits when treated with elritercept (by Keros Therapeutics) by itself and in combination with ruxolitinib.
Updates on the treatment combination of imetelstat (Rytelo by Geron) and ruxolitinib for people with intermediate and high-risk myelofibrosis.
Treatment results of a pan-LOX inhibitor called pxs-5505 (by Syntara) with ruxolitinib.
For people with myelofibrosis who have previously received treatment with ruxolitinib, specialists review how effective and safe the combination of selinexor (Xpovio by Karyopharm) and ruxolitinib is.

Additional Popular Topics

Other myelofibrosis research highlights from ASH 2024 that we'll write more about include:

How effective a donor (allogeneic) stem cell transplant is for someone 70 years or older with myelofibrosis.
Things that should be discussed to effectively personalize myelofibrosis treatment.
How the myelofibrosis treatment ruxolitinib may affect patients’ anemia.
People with myelofibrosis report how anemia and needing blood transfusions impact their quality of life.
Early data reviewing how effective the treatments pacritinib or momelotinib may be.

Stay Tuned!

We’re excited to cover this important information on your behalf in the upcoming weeks, writing in a way that is easy to understand. Bookmark the link below to view the news about published conference coverage.

HealthTree Conference Coverage

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Sources:

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The Best of ASH is a selection of research abstracts that highlight the most cutting-edge science presented in the oral sessions during the annual American Society of Hematology (ASH) meeting.

This year’s session was presented by the 2024 Scientific Program Co-Chairs Drs. Jennifer Trowbridge and Sant-Rayn Pasricha.

In this article, we'll cover the most relevant abstracts for researchers and healthcare professionals working in hematology and blood cancers. The board considered the following themes as most influential for selecting the abstracts:

New mechanisms of cancer cell selection and dominance in cancer blood cell formation
Emerging treatment strategies in acute myeloid leukemia (AML)
Prevention and intervention therapies in multiple myeloma and myeloproliferative neoplasms (MPN)
Considerations for standard-of-care in lymphocytic leukemia and lymphoma

The Best of ASH for Blood Cancers

1. Targeted protein degradation reveals a repressive role of MECOM at the CEBPA Locus to prevent differentiation in high-risk acute myeloid leukemia (AML)

This research delves into the role of the MECOM gene in AML. It reveals that MECOM acts as a key regulator of gene expression, specifically repressing genes that promote cell differentiation. It also may influence the lack of transformation of new blood cells, making them blasts (which are the main identifier of AML cells).

What are the therapeutic implications of this study?

Targeting MECOM could be a new and effective way of treating AML.

To explore this abstract, click here.

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2. Development of a first-in-class CAR-T therapy against carleticulin-mutant neoplasms and evaluation in the relevant human tissue environment

This research focuses on a treatment called CAR-T cell therapy. This new CAR-T targets a specific mutation in the CALR gene found in certain types of myeloproliferative neoplasms (MPNs), such as myelofibrosis.

It is pre-clinical, so patients haven't received it yet, but in experimental models, this therapy has been effective. Researchers also explored combining this CAR-T cell therapy with other treatments, such as bispecific antibody therapies that are limited in patients where other treatments, like JAK inhibitors, are insufficient.

To explore this abstract, click here.

3. Phase 3 randomized study of daratumumab monotherapy versus active monitoring in patients with high-risk smoldering multiple myeloma: primary results of the AQUILA study

Smoldering myeloma is a precursor to multiple myeloma, with limited treatment options currently available for high-risk patients. The AQUILA study explores a new treatment using daratumumab, a therapy already proven effective in active myeloma. Based on these findings, the company has submitted an application to the FDA for daratumumab's approval to treat high-risk smoldering myeloma.

We cover more details in the following articles:

4. Fixed-duration acalabrutinib + venetoclax with or without obinutuzumab vs chemoimmunotherapy for first-line treatment of chronic lymphocytic leukemia (CLL): interim analysis of the multicenter, open-label, randomized, phase 3 AMPLIFY trial

CLL therapies usually contain BTK inhibitors, venetoclax, and/or immunotherapy. This research aims to assess the safety and efficacy of these combinations and proves a low incidence of heart-related side effects typically associated with BTK inhibitors.

We cover more comprehensive details from the session given by the lead investigator here.

5. Ibrutinib-rituximab is superior to rituximab chemotherapy in previously untreated older mantle cell lymphoma patients: results from the international randomized controlled trial, ENRICH

This new combination is used to treat mantle cell lymphoma, a type of B-cell non-Hodgkin lymphoma, in which aggressive treatment options are not considered appropriate for older patients. Considering that the median diagnosis age is 71 years old, there is a need for endurable treatment options. The current standard of care includes immunotherapy, R-CHOP, and bendamustine.

This phase 2/3 trial provides strong evidence that ibrutinib-rituximab should be considered a standard of care for first-line treatment of older patients with mantle cell lymphoma. The median progression-free survival (PFS) for patients who took ibrutinib-rituximab was 65.3 months compared to 43.4 months in the R-CHOP arm.

This finding has the potential to significantly improve outcomes for elderly patients with mantle cell lymphoma.

To explore this abstract, click here.

6. Real-world outcomes of CD19 CAR-T cell therapy in adult patients with relapsed and refractory transformed indolent lymphoma

Indolent lymphoma is associated with lower overall survival; that's why understanding real-world outcomes of an effective therapy such as CAR-T is important, as there is not yet a standard of care approach for this group of patients. This study demonstrated that patients with transformed indolent lymphoma had high complete remission (CR) rates in response to CD19 CAR-T therapy, slower onset of cytokine release syndrome CRS (common in CAR-T), and lower incidence of ICANS.

The conclusion is that the results of this study suggest that CD19 CAR-T is highly effective for treating transformed indolent lymphoma.

To check out this abstract, click here.

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7. In Vivo barcoded CRISPR-Cas9 screen identifies Ncoa4-mediated ferritinophagy as a dependence in Tet2-deficient hemopoiesis

This abstract explores the role of the TET2 gene in clonal hematopoiesis (CH), a condition characterized by the expansion of mutated blood stem cells. To identify the genes involved, the researchers conducted an in vivo CRISPR-Cas9 screen, which revealed NCOA4, a regulator of iron metabolism. Cells with mutations in the gene TET2 exhibit increased mitochondrial activity, which demands significant iron for optimal function.

What are the therapeutic implications of this study?

Understanding the role of iron metabolism can lead to therapies that target it. NCOA4 could mitigate the growth advantage of TET2-mutant cells, offering a new path for therapeutic intervention in clonal hematopoiesis and related blood disorders.

To read more on this abstract, click here.

8. DnmT3a controls hematopoietic stem cells via DNA methylation-independent regulation of telomeres

Understanding the functions of DNMT3A may provide insights into the development of blood disorders associated with DNMT3A mutations. This study suggests that DNMT3A has functions beyond DNA methylation, including a potential role in regulating telomere length and DNA damage response. This role is also essential for cell longevity and function.

Read more about this abstract by clicking here.

With Healthtree, You Can Contribute to Research Too!

The advancements presented during the 2024 Best of ASH session highlight the remarkable progress in blood cancer research, offering hope for more effective and personalized treatment strategies. These breakthroughs would not have been possible without patients' participation in clinical trials.

By joining a clinical trial, you can accelerate life-saving research and help bring innovative therapies to others battling blood cancers.

Together, we can build a brighter future. You can create a free HealthTree account to access all of our tools, like the clinical trial finder, answer surveys, and learn from news articles where we cover global conferences like ASH more fully!

Join HealthTree, the platform that powers life-saving research!

CREATE MY FREE ACCOUNT

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A press briefing hosted at the 2024 ASH conference shared insights from several studies on how lifestyle choices influence people with blood cancer. Read summaries from the research highlights below.

A High-Fiber Diet After a Stem Cell Transplant Reduces the Risk of GVHD

Research led by staff scientist Jenny Paredes, PhD, from the City of Hope National Medical Center suggests that a high-fiber diet following an allogeneic stem cell transplant could decrease the risk of graft-versus-host disease (GVHD) by fostering a healthy gut microbiome.

The study challenges the typical post-transplant low-fiber dietary guidelines, which might be counterproductive by harming microbiome health and reducing gut microbial diversity.

The findings showed that maintaining a high-fiber diet could not only improve gut health but also enhance survival rates and reduce acute GVHD symptoms, especially in the lower gastrointestinal tract. However, Dr. Paredes noted that for some patients, especially those with IBD (inflammatory bowel disease), reducing fiber might help avoid discomfort, underlining the need for tailored dietary recommendations.

High-Fiber Plant-Based Diet May Slow Cancer Progression to Multiple Myeloma

Myeloma specialist Urvi Shah, MD, from Memorial Sloan Kettering Cancer Center, provided research from the NUTRIVENTION study that showed a high-fiber plant-based diet helped patients by improving their metabolism, microbiome, and immune system. This included an improved body mass index (BMI), insulin sensitivity, healthier gut flora, and reduced inflammation.

The study showed promising results, indicating delayed progression of multiple myeloma precursors such as MGUS or smoldering myeloma in some of the patients and a healthier immune environment, potentially due to beneficial changes in the gut microbiome.

To support Dr. Shah in advancing this research, click here to review your eligibility to join the NUTRIVENTION3 study.

Smoking Correlated with Gene Mutations that Worsen MDS

Sangeetha Venugopal, MD, MS, from Sylvester Comprehensive Cancer Center, led research efforts to evaluate the correlation between smoking and increased rates of gene mutations found in people with myelodysplastic syndromes (MDS).

Reviewing the records of almost 2,000 MDS patients, over half of these had a history of cigarette smoking, and 18% were still smoking at the time of diagnosis. Dr. Venugopal found that smokers generally had more mutations in their genes than non-smokers, and the number of mutations increased with the number of pack-years smoked, indicating a dose-response relationship.

Additionally, smoking was associated with a higher rate of cancer progression and a lower overall survival rate among patients compared to non-smokers or those with a shorter history of smoking. If you need help quitting smoking, talk to your doctor about available support options.

Metabolite BHB Created During the Keto Diet May Support CAR T-cell Therapy

Researcher Shan Liu, PhD, and colleagues from the University of Pennsylvania investigated whether specific diets could improve the effectiveness of CAR T-cell therapy.

After testing several diets, they found that the ketogenic diet showed promise in reducing tumor size in mice. The researchers believed a compound made during ketosis called beta-hydroxybutyrate (BHB) was the potential key factor for this impact.

Early data from laboratory studies showed that BHB improved CAR T-cells’ ability to multiply and enhanced their fitness. CAR T-cells could use BHB as an energy source to boost their anti-cancer activity.

It is important to note that you should never make significant changes to your diet or start any supplements without first discussing them with your healthcare team, who can review the potential benefits and risks based on your specific situation.

Evaluating BHB as a supplement in combination with CAR T-cell therapy has not yet been tested in humans. A clinical trial is now underway to review this for people with large B-cell lymphoma (LBCL). More research will help doctors fully understand BHB’s implications for patient care.

GLP-1 Medicines Decrease the Risk of Developing a Vein Blood Clot for People with Type 2 Diabetes

Although the research findings below involve a blood condition called venous thromboembolism, not blood cancer, we included them in the article summary because the insights from this condition may benefit you.

GLP-1 agonists, like semaglutide, appear to offer benefits beyond aiding in weight loss and supporting people with type 2 diabetes to manage blood pressure.

New research from junior medical resident Cho Han Chiang, MD, and colleagues at Mount Auburn Hospital shows that if you have type 2 diabetes, GLP-1 agonists may reduce your risk of developing a vein blood clot (venous thromboembolism [VTE]) by 20% more than people who use DPP-4 inhibitors (another type of medication used to treat type 2 diabetes).

Stay Tuned for More ASH 2024 Coverage

Stay tuned for more ASH coverage in the coming weeks as we share the results of new research in easy-to-understand articles. Access it here: HealthTree Conference Coverage.

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Sources:

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Myelofibrosis (MF) treatment is evolving rapidly, and a recent PeerView session at the start of the American Society for Hematology (ASH) conference shed light on the strides being made. HealthTree Foundation had the privilege of sponsoring the event.

While this session was tailored for healthcare professionals (HCPs), its content carries important implications for myelofibrosis patients and caregivers. Here’s a surface-level breakdown to help you understand the highlights and what they mean for myelofibrosis care.

The Event

The session, titled Mastering the Art of Myelofibrosis Care: Expert Guidance, Clinical Experience, & Innovation for More Personalized Disease Control, took place on Friday morning and featured a panel of global experts discussing the latest updates and strategies in myelofibrosis care. The interactive format allowed HCPs to share concerns, explore treatment innovations, and learn about the latest guidelines and studies.

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Key Takeaways for Myelofibrosis Patients and Caregivers

1. Personalized Treatment Selection Is Critical

One of the session’s main goals was to improve understanding of the factors that help tailor treatments for each patient. This involves looking at baseline health issues like anemia, blood counts, and spleen size, which can impact therapy decisions.

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Case Study Insights:
A high-risk patient was discussed to illustrate how personalized treatment decisions bring hope. These decisions often involve weighing JAK inhibitors (JAKi), stem cell transplants (HSCT), or other therapies.
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2. Treatment Options for Myelofibrosis

Myelofibrosis treatment has expanded significantly in the past decade, especially with the approval of four JAK inhibitors. Here’s a summary of the highlights discussed during the session:

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JAK Inhibitors:
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Pacritinib is effective in reducing spleen size.
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Ruxolitinib is another option, especially for those with low blood counts. It’s being tested in clinical trials at lower doses.
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Updates on Fedratinib (FREEDOM-2 trial) are coming soon, potentially providing more clarity for oncologists. This treatment could be really helpful for those with low blood counts.
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Stem Cell Transplants (HSCT):
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HSCT remains a cornerstone for patients with intermediate-1 or higher risk, offering long-term survival advantages.
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New guidelines emphasize the use of haplo-identical donors, which is crucial in diverse populations with fewer matching relatives.
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3. Addressing Anemia in Myelofibrosis

Anemia is a common and serious complication in myelofibrosis, often requiring transfusions. Reducing transfusion dependence is a key treatment goal.

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Emerging Therapies:
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The phase 3 INDEPENDENCE Trial is exploring the role of luspatercept in MF-associated anemia, with results expected next year.
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Lower-dose JAK inhibitors, treatment schedule adjustments, or transfusions can also help manage anemia.
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4. The Role of New Mechanisms and Combination Therapies

Patients who don’t respond to JAK inhibitors may need alternative approaches. For example:

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New Mechanisms of Action: Drugs like selinexor and elritercept could provide options outside of current JAKi therapies.
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Combination Therapies: While these hold promise, they are mostly limited to clinical trials today. Doublet or triplet therapies may become a viable option in the future as research progresses.
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5. Updated Guidelines and Innovations in HSCT

The session highlighted updates from the NCCN, including newer guidelines for stem cell transplants in MF. For older patients or those who don’t qualify for HSCT, alternative treatments like JAK inhibitors remain essential.

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What This Means for You

This session emphasized that myelofibrosis care is about more than just medications—it’s about developing a holistic and personalized treatment plan.

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Key Themes:
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A detailed baseline assessment ensures the most appropriate treatment.
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Exploring all available options, including clinical trials, is essential.
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Advances in combination therapies and new drugs signal hope for the future.
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Encouragement for Patients and Caregivers:
While managing myelofibrosis requires a great deal of care and consideration, the ongoing dedication to research and innovation provides hope for better outcomes.
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Looking Ahead

The discussion ended on an optimistic note, with a reminder that the field of myelofibrosis care continues to advance. New data, evolving guidelines, and innovative therapies pave the way for a brighter future. Patients and caregivers are encouraged to stay informed, advocate for personalized care, and consider clinical trials when possible.

By understanding the nuances of myelofibrosis treatment shared during this session, patients and caregivers can better engage with their healthcare teams and make informed decisions about their care.

Stay tuned for more ASH coverage in the coming weeks as we reveal the recent results of breaking research in easy-to-understand language! Check it out here: HealthTree Conference Coverage

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The American Society of Hematology (ASH) holds a yearly conference in December to allow researchers and doctors in the blood cancer community an opportunity to share their research related to the newest developments in treatments, technologies, and more for all of hematology.

This includes blood cancers like leukemias, lymphomas, multiple myeloma, myelodysplastic syndromes (MDS), and myeloproliferative neoplasms (MPN). The conference also includes research advances about other types of blood conditions like thrombosis (blood clots that form in blood vessels) and blood transfusions.

Last year’s 2023 attendance record showed that more than 32,081 people from 113 countries attended the conference.

Over 7,950 abstracts about hematology were accepted for this 2024 ASH conference. An abstract refers to a research publication. This demonstrates the number of scientific advancements currently happening in hematology.

When and Where is the ASH Conference Held?

This year, the conference will be held from December 7-10, 2024, in San Diego, California. We look forward to meeting with myelofibrosis specialists to cover the latest and greatest insights about care options. Following the event, expect to see HealthTree News articles sharing what we learned at ASH from myelofibrosis specialists.

We have found that patients who educate themselves about the cancer are better able to advocate for themselves and receive improved care and quality of life. Stay tuned for upcoming ASH content to learn about the latest in myelofibrosis research.

What are the Parts of the ASH Conference?

The conference features a variety of sessions, including:

Research presentations: Here, doctors and researchers unveil their latest findings in myelofibrosis treatment and management. These presentations are often the culmination of extensive research and clinical trials. Research findings are presented in the following formats:\n
- Oral presentations: Researchers share their studies and data through formal speeches, often accompanied by visual aids like slideshows.
- Poster sessions: Researchers display their findings on posters, offering a more interactive format where attendees can engage directly with the presenters to discuss the research in depth.
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Educational sessions: These sessions aim to update medical professionals on the current best practices and new approaches in the treatment of myelofibrosis.
Networking events: These events provide a platform for myelofibrosis specialists to connect, discuss, and potentially collaborate on future projects.

Can Patients Come to ASH?

While the ASH conference is mainly for medical professionals, myelofibrosis patients can also attend if they register. However, it's important to note that the technical nature of the presentations might be challenging for non-medical professionals to understand well.

How Can I Access Research Presented at ASH?

Much of the research discussed at the conference is available on ASH’s website. To help make this information easy to understand for patients, HealthTree will be writing about topics discussed at the conference and sharing it with the myelofibrosis community in the form of HealthTree News. Stay tuned for upcoming ASH content.

Summary

The American Society of Hematology's annual conference is a significant event for the blood cancer community, including those involved in myelofibrosis research. This conference facilitates the sharing of groundbreaking research and developments in myelofibrosis. While primarily aimed at medical professionals, myelofibrosis patients are also welcome to attend once registered, though the technical nature of the presentations may be difficult to understand for non-specialists. HealthTree will help communicate important insights from the conference to the myelofibrosis patient and care partner community to ensure they have the best opportunity to educate themselves about the latest in myelofibrosis research.

Stay updated on myelofibrosis news with HealthTree. Subscribe to our newsletter today!

Myelofibrosis NEWSLETTER

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Janus kinase inhibitors (JAKis) are effective treatments to reduce myelofibrosis symptoms, such as an enlarged spleen size, but they have little impact on the disease itself. New, innovative treatments are needed to elicit deep responses.

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Dr. Naveen Pemmaraju (MD Anderson Cancer Center, Texas) discusses one of these novel treatments: Navitoclax (NAV, AbbVie), which is being tested for myelofibrosis patients in a Phase III (3) trial in combination with a JAKi, ruxolitinib (Jakavi, Novartis). In this specific abstract, ruxolitinib is referred to as RUX.

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This interview was obtained at the 2024 European Hematology Association Conference.

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TRANSFORM-1 Study Details

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The study, called TRANSFORM-1, involved adults with a specific type of blood cancer called myelofibrosis (MF).

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These participants were considered to be at intermediate-2 or high risk according to a scoring system called DIPSS+. They also had enlarged spleens and were generally in good physical condition (able to perform daily activities).

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The participants were divided into two groups:

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One group received a combination of a placebo (a substance with no active drug) and a drug called RUX.
The other group received the combination of navitoclax (NAV) and ruxolitinib (RUX).

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The starting dose of NAV depended on the participant's platelet count (a type of blood cell):

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If platelets were high (above 150), they started with a higher dose (200 mg/day).
If platelets were lower (150 or less), they started with a lower dose (100 mg/day) that could be increased to 200 mg/day.

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The primary goal of this study was to determine the number of participants who had a 35% or greater reduction in spleen size after 6 months of treatment.

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Secondary goals included:

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Changes in symptoms like fatigue and physical functioning.
Response in anemia (low red blood cells).
Patient-reported outcomes (how the patients felt about their symptoms and quality of life).

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Researchers also looked at genetic mutations in the participants and changes in these mutations over time.

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Key Findings from the TRANSFORM-1 Study

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The TRANSFORM-1 study showed that the combination of NAV and RUX was more effective than the combination of a placebo and RUX in reducing spleen size and improving some symptoms in patients with myelofibrosis. However, both treatments had a similar impact on fatigue and physical functioning.

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63% of participants in the NAV+RUX group had a 35% reduction in spleen size by week 24 compared to 32% in the placebo+RUX group. This result was statistically significant, meaning it was unlikely to be due to chance.

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Compared to the placebo+RUX group, more participants in the NAV+RUX group had positive changes in their symptoms and anemia response.

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Safety Profile and Side Effects

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Low platelet and red blood cell counts, diarrhea, and low white blood cell counts were common side effects in the NAV+RUX group. Serious side effects occurred in 28% of the NAV+RUX group and 38% of the placebo+RUX group.

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Conclusion

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The TRANSFORM-1 study highlights the statistically significant benefits of combining NAV with RUX in treating people with myelofibrosis who have never been treated with JAK inhibitors.

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This combination therapy led to a two-fold improvement in spleen volume reduction by week 24 compared to the placebo and RUX combination, even in patients with poor prognostic factors.

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The superiority of NAV+RUX was consistent across various subgroups throughout the study.

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Patient-reported outcomes showed that both treatment groups had similar symptoms and improvements in physical functioning. However, the NAV+RUX group experienced fewer serious side effects, and no new safety issues were found.

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These findings underscore the potential of the NAV+RUX combination as a strong treatment option for myelofibrosis, particularly for those yet to receive JAKis in their treatment.

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If you’re interested in participating in a clinical trial, find one that’s right for you today:

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Myelofibrosis Clinical Trials
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Sources:

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People with myelofibrosis often experience decreased red blood cells (anemia).

One of the points from their discussion that we'll focus on in this article is how to treat myelofibrosis-related anemia. Read their insights below.

Why Does Anemia Happen for Myelofibrosis Patients?

Many strategies exist for improving low red blood cell counts. Read about the methods agreed upon in the consensus program to alleviate myelofibrosis patients’ anemia.

When Should Anemia Treatment Start for Myelofibrosis Patients?

How Should Anemia Be Managed if Caused by Myelofibrosis or its Treatments?

Management of Treatment-Related Anemia

Some myelofibrosis treatments may cause anemia. If this is the case, your doctor may recommend reducing the current therapy dose for 4 to 6 weeks to manage the anemia.

Management of Myelofibrosis-Related Anemia

In severe cases where other treatments have failed, surgery to remove the spleen (splenectomy) may be considered.

See the below tables to learn more about these treatments.

The first table shows the current anemia treatments for myelofibrosis and how they work.

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\n Current Treatments \n	\n How it Works \n
\n Red blood cell transfusion \n	\n Receive an infusion of donor red blood cells to normalize levels \n
\n Recombinant ESA (erythropoiesis-stimulating agents) \n	\n Activate signals that create red blood cells \n
\n Danazol (androgens) \n	\n Stimulates the production of red blood cells \n
\n Remove the spleen (splenectomy) \n	\n Remove the spleen if it gets too big from trapped blood cells \n
\n Immunomodulatory (IMiD) treatments like thalidomide, lenalidomide, and pomalidomide \n	\n Helps the body produce red blood cells \n
\n JAK inhibitors like ruxolitinib, fedratinib, pacritinib, and momelotinib \n	\n Prevents overactive JAK signaling seen in myelofibrosis cells. Helps reduce spleen size \n

This next table shows emerging anemia treatments for myelofibrosis (those in clinical trials) and how they work.

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\n Emerging Treatments in Clinical Trials \n	\n How it Works \n
\n Luspatercept and KER-050 (TGF-β ligand traps) \n	\n Helps young red blood cells mature \n
\n Pelabresib (epigenetic modulators) \n	\n Reduces inflammation in the bone marrow to reduce anemia \n
\n PRM-151 (antifibrotic agents) \n	\n Reduces bone marrow scarring seen in myelofibrosis and supports the body’s regulation process of red blood cells \n
\n Imetelstat (telomerase inhibitors) \n	\n Helps red blood cells produce normally \n
\n Navitoclax (BCL-2/BCL-xL inhibitors) \n	\n Halts red blood cells from self-destructing to maintain mature red blood cell levels \n

Summary

If you don’t have a myelofibrosis specialist, consider adding one to your healthcare team today: Myelofibrosis Specialist Directory.

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Stay updated on myelofibrosis news with HealthTree. Subscribe to our newsletter today!

Myelofibrosis Newsletter

Sources:

Caregivers, share this article with your loved ones so they know how they can help!

Ways to Help Blood Cancer Caregivers

Unspoken Simple Tasks

Sometimes, the most meaningful acts of service include simple actions that care partners weren't even aware they needed.

These could include:

Bringing in/out the trash or recycling bins on trash day
Shoveling snow
Bringing gift cards (or, when requested, food)
Treat drop-offs to let you know you were thinking of them
Mowing the lawn

Pre-Arranged Tasks

If you know of a loved one who is taking care of someone with blood cancer, consider offering to do one of these pre-arranged tasks.

Rides to treatment
Errands/chores
Sunshine basket (care baskets with crosswords, hygiene products, snacks, etc. for hospital stays)
Freezer/crockpot meals
Take care of pets
Pick up prescriptions
Sign up for UPS/FedEx deliveries requiring signatures
Make hotel and flight reservations
Negotiate price with airline due to \"medical flight\" status
Help resolve insurance issues

Nail appointments
Hair/spa appointments
Walks or other forms of exercise
Movie

Spiritual Check-ins

You could consider:

Checking in with people from your religious circle
Sharing you are praying for them and ask if there are any specific prayer requests they have
Share inspiring and comforting scriptures to remind them they are not alone

Mental Health Check-ins

Consider sharing the following:

Share encouraging words
Validation of emotions: Letting the caregiver know it's ok to feel the way they feel
Keep them included: Even if they're not available, keep inviting them to book clubs, parties, dinners, and get-togethers so they feel included
Care plan: Create checklists for them to ensure they are taking care of themselves. Supportively hold them accountable for their own health
Be an ear to vent to
Remember important days and “celebrate” or acknowledge them
Do a non-cancer activity together (stream a movie, craft, play games, etc.)
Shared caregiving responsibilities like loved ones taking “shifts” to care for patients in/out of the hospital

Think Twice Before Doing This for Caregivers

While we know that you have good intentions, you may want to think twice before doing the following when trying to help blood cancer care partners:

Pushing food or delivering food without asking
Sharing unwanted/unasked-for medical advice
Sharing doubt about diagnosis
Sharing horror stories about diagnosis or other sicknesses/cancers

While improving the quality of life of blood cancer patients is important, let's also work to improve the lives of blood cancer care partners.

Summary

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Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

Learn insights on managing this role.

How Can the Caregiver Role Change?

Sometimes, your role as a caregiver can include being a walking/exercise partner. Other times, it can include being an appointment keeper or secretary at certain appointments.

Tips for Managing the Caregiver Role

Maci Chance, a blood cancer care partner, shared the following advice for others in similar roles. Watch the video below or read the summary highlights to learn her advice:

Summary

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Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

New Myelofibrosis Treatments

How effective and safe is fedratinib (Inrebic by BMS) for people with myelofibrosis who have low platelets?
If you have previously relapsed or become refractory to a JAK inhibitor, how effective is the MDM2 inhibitor navtemadlin (by Kartos Therapeutics)?
If ruxolitinib (Jakafi by Incyte) stops working, how effective is rovadicitinib (by Chia Tai Tianqing Pharmaceutical)?
How safe and effective is the next-generation JAK2/FLT3 inhibitor called flonoltinib maleate (by Chengdu Zenitar Biomedical Technology)?

Advancements in Treating Myelofibrosis

People with myelofibrosis experienced improved blood counts and other benefits when treated with elritercept (by Keros Therapeutics) by itself and in combination with ruxolitinib.
Updates on the treatment combination of imetelstat (Rytelo by Geron) and ruxolitinib for people with intermediate and high-risk myelofibrosis.
Treatment results of a pan-LOX inhibitor called pxs-5505 (by Syntara) with ruxolitinib.
For people with myelofibrosis who have previously received treatment with ruxolitinib, specialists review how effective and safe the combination of selinexor (Xpovio by Karyopharm) and ruxolitinib is.

Additional Popular Topics

Other myelofibrosis research highlights from ASH 2024 that we'll write more about include:

How effective a donor (allogeneic) stem cell transplant is for someone 70 years or older with myelofibrosis.
Things that should be discussed to effectively personalize myelofibrosis treatment.
How the myelofibrosis treatment ruxolitinib may affect patients’ anemia.
People with myelofibrosis report how anemia and needing blood transfusions impact their quality of life.
Early data reviewing how effective the treatments pacritinib or momelotinib may be.

Stay Tuned!

HealthTree Conference Coverage

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The Best of ASH is a selection of research abstracts that highlight the most cutting-edge science presented in the oral sessions during the annual American Society of Hematology (ASH) meeting.

This year’s session was presented by the 2024 Scientific Program Co-Chairs Drs. Jennifer Trowbridge and Sant-Rayn Pasricha.

New mechanisms of cancer cell selection and dominance in cancer blood cell formation
Emerging treatment strategies in acute myeloid leukemia (AML)
Prevention and intervention therapies in multiple myeloma and myeloproliferative neoplasms (MPN)
Considerations for standard-of-care in lymphocytic leukemia and lymphoma

The Best of ASH for Blood Cancers

1. Targeted protein degradation reveals a repressive role of MECOM at the CEBPA Locus to prevent differentiation in high-risk acute myeloid leukemia (AML)

What are the therapeutic implications of this study?

Targeting MECOM could be a new and effective way of treating AML.

To explore this abstract, click here.

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2. Development of a first-in-class CAR-T therapy against carleticulin-mutant neoplasms and evaluation in the relevant human tissue environment

To explore this abstract, click here.

3. Phase 3 randomized study of daratumumab monotherapy versus active monitoring in patients with high-risk smoldering multiple myeloma: primary results of the AQUILA study

We cover more details in the following articles:

4. Fixed-duration acalabrutinib + venetoclax with or without obinutuzumab vs chemoimmunotherapy for first-line treatment of chronic lymphocytic leukemia (CLL): interim analysis of the multicenter, open-label, randomized, phase 3 AMPLIFY trial

We cover more comprehensive details from the session given by the lead investigator here.

5. Ibrutinib-rituximab is superior to rituximab chemotherapy in previously untreated older mantle cell lymphoma patients: results from the international randomized controlled trial, ENRICH

This finding has the potential to significantly improve outcomes for elderly patients with mantle cell lymphoma.

To explore this abstract, click here.

6. Real-world outcomes of CD19 CAR-T cell therapy in adult patients with relapsed and refractory transformed indolent lymphoma

The conclusion is that the results of this study suggest that CD19 CAR-T is highly effective for treating transformed indolent lymphoma.

To check out this abstract, click here.

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7. In Vivo barcoded CRISPR-Cas9 screen identifies Ncoa4-mediated ferritinophagy as a dependence in Tet2-deficient hemopoiesis

What are the therapeutic implications of this study?

Understanding the role of iron metabolism can lead to therapies that target it. NCOA4 could mitigate the growth advantage of TET2-mutant cells, offering a new path for therapeutic intervention in clonal hematopoiesis and related blood disorders.

To read more on this abstract, click here.

8. DnmT3a controls hematopoietic stem cells via DNA methylation-independent regulation of telomeres

Read more about this abstract by clicking here.

With Healthtree, You Can Contribute to Research Too!

By joining a clinical trial, you can accelerate life-saving research and help bring innovative therapies to others battling blood cancers.

Join HealthTree, the platform that powers life-saving research!

CREATE MY FREE ACCOUNT

A press briefing hosted at the 2024 ASH conference shared insights from several studies on how lifestyle choices influence people with blood cancer. Read summaries from the research highlights below.

A High-Fiber Diet After a Stem Cell Transplant Reduces the Risk of GVHD

The study challenges the typical post-transplant low-fiber dietary guidelines, which might be counterproductive by harming microbiome health and reducing gut microbial diversity.

High-Fiber Plant-Based Diet May Slow Cancer Progression to Multiple Myeloma

To support Dr. Shah in advancing this research, click here to review your eligibility to join the NUTRIVENTION3 study.

Smoking Correlated with Gene Mutations that Worsen MDS

Metabolite BHB Created During the Keto Diet May Support CAR T-cell Therapy

Researcher Shan Liu, PhD, and colleagues from the University of Pennsylvania investigated whether specific diets could improve the effectiveness of CAR T-cell therapy.

GLP-1 Medicines Decrease the Risk of Developing a Vein Blood Clot for People with Type 2 Diabetes

GLP-1 agonists, like semaglutide, appear to offer benefits beyond aiding in weight loss and supporting people with type 2 diabetes to manage blood pressure.

Stay Tuned for More ASH 2024 Coverage

Stay tuned for more ASH coverage in the coming weeks as we share the results of new research in easy-to-understand articles. Access it here: HealthTree Conference Coverage.

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The Event

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Key Takeaways for Myelofibrosis Patients and Caregivers

1. Personalized Treatment Selection Is Critical

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Case Study Insights:
A high-risk patient was discussed to illustrate how personalized treatment decisions bring hope. These decisions often involve weighing JAK inhibitors (JAKi), stem cell transplants (HSCT), or other therapies.
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2. Treatment Options for Myelofibrosis

Myelofibrosis treatment has expanded significantly in the past decade, especially with the approval of four JAK inhibitors. Here’s a summary of the highlights discussed during the session:

\n
JAK Inhibitors:
\n

\n
Pacritinib is effective in reducing spleen size.
\n
\n
Ruxolitinib is another option, especially for those with low blood counts. It’s being tested in clinical trials at lower doses.
\n
\n
Updates on Fedratinib (FREEDOM-2 trial) are coming soon, potentially providing more clarity for oncologists. This treatment could be really helpful for those with low blood counts.
\n

\n
Stem Cell Transplants (HSCT):
\n

\n
HSCT remains a cornerstone for patients with intermediate-1 or higher risk, offering long-term survival advantages.
\n
\n
New guidelines emphasize the use of haplo-identical donors, which is crucial in diverse populations with fewer matching relatives.
\n

3. Addressing Anemia in Myelofibrosis

Anemia is a common and serious complication in myelofibrosis, often requiring transfusions. Reducing transfusion dependence is a key treatment goal.

\n
Emerging Therapies:
\n

\n
The phase 3 INDEPENDENCE Trial is exploring the role of luspatercept in MF-associated anemia, with results expected next year.
\n
\n
Lower-dose JAK inhibitors, treatment schedule adjustments, or transfusions can also help manage anemia.
\n

4. The Role of New Mechanisms and Combination Therapies

Patients who don’t respond to JAK inhibitors may need alternative approaches. For example:

\n
New Mechanisms of Action: Drugs like selinexor and elritercept could provide options outside of current JAKi therapies.
\n
\n
Combination Therapies: While these hold promise, they are mostly limited to clinical trials today. Doublet or triplet therapies may become a viable option in the future as research progresses.
\n

5. Updated Guidelines and Innovations in HSCT

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What This Means for You

This session emphasized that myelofibrosis care is about more than just medications—it’s about developing a holistic and personalized treatment plan.

\n
Key Themes:
\n

\n
A detailed baseline assessment ensures the most appropriate treatment.
\n
\n
Exploring all available options, including clinical trials, is essential.
\n
\n
Advances in combination therapies and new drugs signal hope for the future.
\n

\n
Encouragement for Patients and Caregivers:
While managing myelofibrosis requires a great deal of care and consideration, the ongoing dedication to research and innovation provides hope for better outcomes.
\n

Looking Ahead

By understanding the nuances of myelofibrosis treatment shared during this session, patients and caregivers can better engage with their healthcare teams and make informed decisions about their care.

Stay tuned for more ASH coverage in the coming weeks as we reveal the recent results of breaking research in easy-to-understand language! Check it out here: HealthTree Conference Coverage

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Why the SENTRY Trial Matters

Unmet Needs in Myelofibrosis Treatment

\n
Less than half of patients on approved JAK inhibitors achieve the benchmark of a 35% spleen volume reduction (SVR35), and many eventually stop responding.
\n
\n
Myelofibrosis remains a challenging condition with limited treatment options for managing progressive symptoms and improving long-term outcomes.
\n

Encouraging Phase 1 Results

Nearly 80% of patients treated with selinexor plus ruxolitinib achieved SVR35 compared to less than 50% with ruxolitinib alone.

Improved Trial Design

The trial is actively enrolling 350 patients and aims to report top-line results in the second half of 2025.

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What Sets Selinexor Apart

The combination therapy has demonstrated a favorable safety profile, with no new adverse signals in early trials.

Expert Perspectives

\n
Dr. Raajit Rampal, Memorial Sloan Kettering Cancer Center, shares, “The doubling of SVR35 rates and the substantial improvements in Abs-TSS seen in the Phase 1 trial are meaningful and provide strong justification for the Phase 3 SENTRY trial.”
\n

Another myelofibrosis expert weighs in on the recent clinical trial endpoint change:

\n
“The shift to Abs-TSS as a co-primary endpoint better represents the cumulative benefit patients experience, aligning with their treatment goals,” says Dr. Ruben Mesa, Atrium Health Levine Cancer Institute.
\n

Looking Ahead and Enrolling

If you’re interested in enrolling in this clinical trial, click below to learn more:

SENTRY Trial Enrollment

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Sources:

\n
Karyopharm Announces Favorable Change in Co-Primary Endpoint for Pivotal Phase 3 SENTRY Trial in Myelofibrosis - Oct 31, 2024
\n

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Last year’s 2023 attendance record showed that more than 32,081 people from 113 countries attended the conference.

When and Where is the ASH Conference Held?

What are the Parts of the ASH Conference?

The conference features a variety of sessions, including:

Research presentations: Here, doctors and researchers unveil their latest findings in myelofibrosis treatment and management. These presentations are often the culmination of extensive research and clinical trials. Research findings are presented in the following formats:\n
- Oral presentations: Researchers share their studies and data through formal speeches, often accompanied by visual aids like slideshows.
- Poster sessions: Researchers display their findings on posters, offering a more interactive format where attendees can engage directly with the presenters to discuss the research in depth.
\n
Educational sessions: These sessions aim to update medical professionals on the current best practices and new approaches in the treatment of myelofibrosis.
Networking events: These events provide a platform for myelofibrosis specialists to connect, discuss, and potentially collaborate on future projects.

Can Patients Come to ASH?

How Can I Access Research Presented at ASH?

Summary

Stay updated on myelofibrosis news with HealthTree. Subscribe to our newsletter today!

Myelofibrosis NEWSLETTER

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Sources:

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Important Changes to Medicare, Federal, and Private Drug Plans for 2025

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How the Changes Affect Blood Cancer Patients

If any cancer treatment drugs are excluded from your specific plan, you’ll be required to pay the full price out-of-pocket. Consider asking for a generic of the drug if possible. Additionally:

\n
Costs for non-formulary drugs won’t count toward your maximum out-of-pocket (MOOP) limit of $2,000.
\n
\n
The MOOP cap only applies to prescriptions covered by your plan.
\n

What About Private Insurance Plans?

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What You Can Do Now

Here are steps you can take to prepare for these changes and ensure continued access to your medications:

Understand Formulary vs. Non-Formulary Drugs: A formulary is your plan’s list of covered medications. Drugs on the formulary may be divided into tiers, with higher tiers often costing more. Non-formulary drugs are not covered by your insurance plan, meaning you’ll have to pay their full price out-of-pocket. Review your plan to determine which tier your medication falls under or if it’s covered at all.
Review Your Plan Changes: You should have received a Summary of Plan Changes in September. Read it carefully and identify any potential issues with your coverage.
Contact Your Insurance Provider: Contact your plan for details about drug coverage changes, including alternatives like generics.
Work with Your Doctor: Discuss with your healthcare provider to request prior authorizations or exceptions for \"medically necessary\" prescriptions.
Don’t Wait: Avoid finding out about coverage issues at the pharmacy. Start now to prevent treatment gaps.
Ask for an Alternative: If your prescribed drug is not in your Plan formulary, request a generic if possible. Still, check to make sure it is also a Plan formulary-covered drug.

Seek Assistance If Needed

Another helpful resource is CMS.gov, which can help you review your Medicare plan.

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Act Now to Avoid Catastrophic Costs

Extra Resources on the Subject:

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Learn about ruxolitinib, a non-chemotherapy treatment for people with polycythemia vera (PV).

What is Ruxolitinib?

How Effective is Ruxolitinib for PV?

Controlling Red Blood Cell Levels

60% of PV patients who took ruxolitinib kept their red blood cell levels (hematocrit) under control without blood draw treatment (phlebotomy).

This is an improvement compared to only 19% of patients taking other treatments who maintained control over their red blood cell levels.

Reducing Spleen Size

40% of PV patients who took ruxolitinib saw at least a 35% reduction in their spleen size. This is an improvement compared to less than 1% of PV patients who took other therapies.

Other Insights of Ruxolitinib for PV Patients

A large research analysis looked at additional benefits and impacts of ruxolitinib for PV patients. The data showed:

Ruxolitinib significantly reduces your risk of developing blood clots in blood vessels (thromboembolism).
PV patients overall have improved symptoms (measured by the Myeloproliferative Neoplasms-Symptom Assessment Form).
Ruxolitinib was, however, linked to increased rates of nonmelanoma skin cancer, anemia, and herpes zoster infections.

What are the Common Side Effects of Ruxolitinib for PV Patients?

Common side effects that may be experienced while taking ruxolitinib include low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea.

To read more about the potential side effects of ruxolitinib for PV patients, click here. If you have concerns about how side effects are managed during treatment, please contact a PV specialist.

Summary

There are possible side effects from this treatment, as mentioned above. Contact a PV specialist to discuss how to manage treatment-related side effects.

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

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If you notice any of these stress indicators, consider the following advice from fellow blood cancer care partners on how to reduce burnout.

Eight Tips to Reduce Caregiver Burnout

Blood cancer care partners shared the following tips for how they reduce burnout while supporting their loved one.

Set boundaries with the patient around what they want help with. Even if it is out of love, be willing to let go of nagging them on areas they don’t want help with.
Get outside (weather permitting). Go for a walk, run, bike ride, garden, or just a break sitting outside and breathing in the fresh air.
Show yourself compassion about the learning curve. Don’t try to cram all the information in at once. If you get a specialist on your team, trust their input up front, and you can learn more about the cancer over time.
Give yourself the validation that it is okay to take frequent breaks from thinking about cancer. Spend time doing a hobby you would have enjoyed pre-diagnosis.
Keep up with your own health care. Putting your health first will help reduce resentment. Your well-being will also impact your ability to care for others.
Take a break from depressing social media posts. Also, when searching for information, seek it out from credible sources, such as specialists.
Even if you feel like you need to be strong for your loved one, you need to take time to feel your emotions. Otherwise, they will build up over time and negatively impact your health. Seek out a mental health professional to support you as needed.
Even though there are bad days, when the good moments come, give yourself permission to enjoy those too. It does not all have to be doom and gloom.

Conclusion

Connect to Other Caregivers!

Visit one of the links below to learn from and speak to other blood cancer care partners. HealthTree groups we have so far include:

If you would like to share your story or tips about being a blood cancer caregiver, please email info@healthtree.org.

Sources:

It's important to consult with an attorney who specializes in estates, especially if your situation is complex, such as having a blended marriage or caring for a special needs individual.

Disclosure: I am only providing an overview of estate planning. Please consult with an attorney to address specific concerns you may have.

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What Is an Estate?

An estate, simply, is everything that you own that is in your name. Your estate is responsible for any debt owed at your death.

It is important to prepare well in advance. This planning will help you feel more secure about your future and confident that your loved ones will be taken care of after you pass.

Many people don’t understand that estate planning can assist you in tax mitigation before death.

Many of the issues that can be addressed in an estate plan are:

Providing for a spouse or children
Preserving assets for future generations
Supporting your favorite charity
Ensuring all of your assets that pass through a beneficiary designation will be distributed per your wishes
Minimize taxes and expenses
Ensuring the persons you name to handle your estate or make decisions on your behalf are put on record
Make sure your heirs can manage their wealth or have a resource to assist them in place
Ensure that anyone you are responsible for financially, such as those with special needs, is taken care of
Assure that anyone you want to leave assets to is assigned, including entities such as charities
Allow you to provide protection of assets from ex-spouse/s or creditors

Common Documents and Descriptions for the Estate Plan

Here are the most common documents and descriptions of the documents used to help you carry out an Estate Plan:

Will: This is a legal document used to outline how you want your assets and property to be distributed after you die. It can also help you name guardians for your children, dependents, or pets, as well as the person (executor) who will handle these affairs after your death.
Durable Power of Attorney: Allows you to name someone (agent) to handle your financial affairs if you’re unable to do so.
Power of Attorney for Healthcare: It allows you to appoint a trusted family member or friend to make decisions about your medical care if you are unable to make them yourself.
Privacy Releases: These are documents that are offered to you when seeking medical attention. It gives permission for someone on your behalf to access information and documents necessary to represent you in healthcare matters. Many healthcare POAs have this included. Check with your healthcare providers, as they may have their own privacy waivers.
Living Will (Advanced Medical Directive): This document requires careful thought when naming someone to make decisions on your behalf with your healthcare providers as to how you are to be medically treated when you are unable to make the decisions yourself.
Trust: There are many types of trust to help you manage your assets. They are often used as part of an estate plan to help minimize or eliminate transfer taxes, as well as other opportunities unrelated to taxes to help solidify an estate plan.

What Happens If You Die Without Any of These Documents?

There are three types of planned gifts:

Outright gifts that are given of appreciated assets, such as stocks as a substitute for cash
There are gifts that return income or other financial benefits to the donor in return for the contribution
Gifts that are donated after the death of the donor

Charitable remainder unitrust and annuity trust are individually managed trusts that pay beneficiaries either a fixed percentage of trust income or a fixed dollar amount.

A huge benefit of gifting is the tax benefits to the donor depending on the type of gift:

A donor can realize a charitable deduction for the real market value of the asset where the donor will not pay capital gains tax on the transfer of the appreciated asset, such as securities or property.
A tax benefit to the donor can be realized for donated life-income gifts. The donors will receive an income tax deduction for the full, fair market value of the assets contributed minus the present value of the income interest retained. If the gift is appreciated property, they pay no upfront capital gains tax on the transfer.
Bequests are gifts donated at the donor's death, such as a life insurance policy or a retirement account. They don’t generate a lifetime income tax deduction for the donor; however, they are exempt from estate tax.

They will also help you manage the gifting and maximize the tax benefits while minimizing tax consequences.

Triage Cancer is a good place to start educating yourself and finding the resources you may need to start the process.

HealthTree has information to help you understand Estate and Legacy planning and provide you with opportunities to include the HealthTree Foundation in your planning. Learn more here: Legacy Giving

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Learn how a new polycythemia vera (PV) treatment in clinical trials called rusfertide is showing promise in helping patients reduce the number of blood draws they need each year to manage the cancer.

What is Rusfertide for PV?

Rusfertide is a new medicine for people with polycythemia vera (PV) being evaluated in a phase 3 clinical trial called the VERIFY study. The trial is active, but it is no longer recruiting.

Phase 3 refers to comparing the new treatment to standard PV therapy. To learn about how clinical trials work in general, click here.

As a person with PV, decreasing the number of blood draws you receive can help reduce side effects associated with blood draws, like fatigue, brain fog, and traveling to visit a doctor.

How Effective is Rusfertide for PV?

Data from phase 2 of the REVIVE study showed for 70 PV patients who took rusfertide in addition to their ongoing treatment:

The majority of patients experienced a significant reduction in the number of blood draws required. Most patients went from 9 blood draws a year to only 1 blood draw a year.
Patients were supported in maintaining healthy red blood cell levels (hematocrit) without a blood draw for more than two years.
PV-related symptoms like fatigue, night sweats, brain fog, and itching decreased.
The most common side effect experienced was an injection site reaction of itching and swelling. These cases were usually mild and decreased over time.

The pharmaceutical companies Protagonist, in collaboration with Takeda, plan to submit rusfertide’s FDA approval application in 2025.

Summary

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

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Myeloproliferative neoplasms (MPNs) are a group of blood cancers that originate in the bone marrow, leading to an overproduction of blood cells. The conditions classified as MPNs include:

Chronic myelogenous leukemia (CML)
Polycythemia vera (PV)
Essential thrombocythemia (ET)
Primary myelofibrosis (PMF)

What Are Interferons?

Specifically, interferons:

Act as a first line of defense against viruses and cancer by blocking their growth and spread.
Trigger immune cells to identify and destroy abnormal cells.
\"Interfere\" with the multiplication of harmful cells, hence their name.

In the context of MPNs, interferons, such as pegylated interferon (e.g., Pegasys), are commonly used for long-term disease control.

Is There a Shortage of Interferon?

It's important to note that interferon alpha-2a (non-pegylated) was discontinued in the United States in 2021, further limiting treatment options.

Healthcare teams, including pharmacists and clinicians, are actively working to manage supplies and identify alternative treatments to minimize disruption to patient care.

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What Are the Alternatives?

What makes Besremi different?

It is a pegylated interferon, meaning it is attached to a compound (polyethylene glycol) that prolongs its effects in the body.
It is injected under the skin every two weeks and is designed for long-term use.
Besremi works by binding to bone marrow receptors, signaling a reduction in the overproduction of blood cells.

Important Note: Interferon therapies, including Besremi, are not suitable for individuals with severe liver disease or autoimmune hepatitis, as these conditions may worsen with treatment.

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Are There Side Effects from Interferon Use?

Interferon therapies, while effective, can have side effects. These include:

Common Side Effects:

Flu-like symptoms: fever, muscle aches, chills, fatigue, headache, joint pain, nausea.
Injection site reactions: bruising, redness, swelling, bleeding.
Hair loss, dizziness, dry mouth, skin changes, and weight fluctuations.

Serious Side Effects:

Heart problems: cardiac arrhythmias, cardiomyopathy.
Organ failure: liver or kidney failure.
Neurological issues: polyneuropathy (nerve damage).
Myelosuppression: decreased bone marrow activity, leading to fewer blood cells.

Patients should report any severe or persistent side effects to their healthcare team immediately.

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Conclusion

Sources:

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Myeloproliferative neoplasms (MPNs) are a group of blood cancers that originate in the bone marrow, leading to an overproduction of blood cells. The conditions classified as MPNs include:

Chronic myelogenous leukemia (CML)
Polycythemia vera (PV)
Essential thrombocythemia (ET)
Primary myelofibrosis (PMF)

What Are Interferons?

Specifically, interferons:

Act as a first line of defense against viruses and cancer by blocking their growth and spread.
Trigger immune cells to identify and destroy abnormal cells.
\"Interfere\" with the multiplication of harmful cells, hence their name.

In the context of MPNs, interferons, such as pegylated interferon (e.g., Pegasys), are commonly used for long-term disease control.

Is There a Shortage of Interferon?

It's important to note that interferon alpha-2a (non-pegylated) was discontinued in the United States in 2021, further limiting treatment options.

Healthcare teams, including pharmacists and clinicians, are actively working to manage supplies and identify alternative treatments to minimize disruption to patient care.

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What Are the Alternatives?

What makes Besremi different?

It is a pegylated interferon, meaning it is attached to a compound (polyethylene glycol) that prolongs its effects in the body.
It is injected under the skin every two weeks and is designed for long-term use.
Besremi works by binding to bone marrow receptors, signaling a reduction in the overproduction of blood cells.

Important Note: Interferon therapies, including Besremi, are not suitable for individuals with severe liver disease or autoimmune hepatitis, as these conditions may worsen with treatment.

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Are There Side Effects from Interferon Use?

Interferon therapies, while effective, can have side effects. These include:

Common Side Effects:

Flu-like symptoms: fever, muscle aches, chills, fatigue, headache, joint pain, nausea.
Injection site reactions: bruising, redness, swelling, bleeding.
Hair loss, dizziness, dry mouth, skin changes, and weight fluctuations.

Serious Side Effects:

Heart problems: cardiac arrhythmias, cardiomyopathy.
Organ failure: liver or kidney failure.
Neurological issues: polyneuropathy (nerve damage).
Myelosuppression: decreased bone marrow activity, leading to fewer blood cells.

Patients should report any severe or persistent side effects to their healthcare team immediately.

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Conclusion

Sources:

Myelofibrosis (MF) is a type of blood cancer that affects the bone marrow, leading to abnormal production of blood cells. Over time, scar tissue forms in the bone marrow, reducing its ability to make healthy blood cells. This can cause a wide range of symptoms, including fatigue, an enlarged spleen, and difficulty fighting infections. Myelofibrosis can develop on its own (primary MF) or as a progression from other conditions like polycythemia vera (PV) or essential thrombocythemia (ET).

While each case is unique, several important factors have been shown to impact how myelofibrosis develops and how patients respond to treatment.

If you've been diagnosed with myelofibrosis, you may have wondered what factors can potentially influence your health, disease progression, and outcomes. Understanding these factors can help you feel more informed and engaged in managing your health.

Recent Data for Myelofibrosis Risk Factors

A recent retrospective study published in the Annals of Hematology evaluated data from two sources:

\n
The SEER database (2000-2021), 5,403 myelofibrosis patientsMontefiore Medical Center (2000-2023),, 84 cases.
\n

The study examines how social and demographic factors impact survival in myelofibrosis, a rarely studied topic.

It shows that social and demographic factors, including sex, race, marital status, and income, are associated with survival in myelofibrosis. Addressing these social and demographic factors is key to improving overall health outcomes and providing fair care for all myelofibrosis patients.

What are the Main Findings from SEER Data?

The SEER database analysis (2000-2021) included 5,403 myelofibrosis patients, with a median age of 69 years. The majority (82%) were non-Hispanic White.

\n
Survival Rates:
\n

\n
2-year survival: 69%
\n
\n
5-year survival: 42%
\n

\n
Factors Linked to Worse Survival:
\n

\n
Older age
\n
\n
Male sex
\n
\n
Diagnosis before 2011 (prior to ruxolitinib approval)
\n

\n
Predictors of Worse Overall Survival:
\n

\n
Non-Hispanic Black ethnicity
\n
\n
Unmarried status
\n
\n
Lower income
\n

\n
An Interesting Observation:
Married patients tended to have better treatment adherence, psychological support, and healthier eating habits, all of which contributed to improved outcomes.
\n

What are the Main Findings from the Single-Center Analysis?

The analysis (2000-2023) included 84 myelofibrosis patients treated at Montefiore Medical Center.

\n
Survival Rates:
\n

\n
2-year survival: 90%
\n
\n
5-year survival: 61%
\n

\n
Factors Linked to Survival:
\n

\n
Age was a significant predictor of worse survival.
\n
\n
Non-Hispanic Black patients had the lowest median survival, although the difference was not statistically significant.
\n

\n
Socioeconomic Observations:
Non-Hispanic Black and Hispanic patients resided in areas with higher socioeconomic stress compared to Non-Hispanic White patients.
\n

What Influences Myelofibrosis Outcomes?

Several factors may affect how myelofibrosis progresses, along with your overall health, and the effectiveness of treatments. These include genetic mutations, age, blood counts, symptoms, and other underlying health conditions.

Genetic Mutations

Some patients have specific mutations linked to a more aggressive form of the disease. The most common mutations include:

\n
JAK2 (Janus kinase 2) mutations, found in about 50-60% of patients.
\n
\n
CALR (calreticulin) mutations, found in about 20-30% of patients.
\n
\n
MPL (myeloproliferative leukemia protein) mutations, found in a smaller percentage of patients.
\n

These mutations can influence how myelofibrosis progresses and how it responds to certain treatments.

Age

A patient’s age is a key factor for predicting how myelofibrosis will affect people and which treatment strategies will work best for them. For example, in myelofibrosis, older patients are prone to have more complications, and for younger patients, it may progress more slowly.

Blood Counts

Are essential for monitoring myelofibrosis progression and assessing prognosis.

\n
Anemia (low red blood cell count) can be one of the first indicators of myelofibrosis and may be associated with a more aggressive form of the disease.
\n
\n
Leukocytosis (high white blood cell count) or leukopenia (low white blood cell count) can also affect outcomes because it interferes with the immune response.
\n
\n
Thrombocytopenia (low platelet count) may indicate a more advanced disease and can lead to complications like bleeding.
\n

$\"\"$

Spleen Size

Is increased in many myelofibrosis patients, known as splenomegaly, which can cause discomfort, early satiety, and a range of other symptoms. A larger spleen size often suggests a more advanced stage of your myelofibrosis. The size of your spleen can also impact treatment choices, as certain medications or procedures may be recommended to reduce spleen size.

Symptoms

Fatigue, night sweats, bone pain, and weight loss can provide insight into the evolution of myelofibrosis. Monitoring and managing these symptoms is key to improving one's quality of life.

Bone Marrow Fibrosis

The degree of scarring or fibrosis in the bone marrow is another factor that can affect outcomes. More advanced fibrosis is often associated with poorer survival rates. Regular monitoring through bone marrow biopsies may be needed to assess the extent of fibrosis.

Other Health Conditions

Such as heart disease, diabetes, or kidney problems, can also affect how well you respond to treatment. Patients with multiple health issues may have a more challenging time managing myelofibrosis and may experience more complications.

Cytogenetics

Chromosomal changes have been linked to more aggressive disease and worse outcomes. For example, patients with complex karyotypes, such as in ASXL1, SRSF2, EZH2, or IDH1/2 tend to have a higher risk of progression.

Prognostic Scoring Systems

Doctors use prognostic scoring systems to help predict outcomes and guide treatment decisions. One of the most widely used tools is the Dynamic International Prognostic Scoring System (DIPSS), which considers factors like age, hemoglobin levels, white blood cell counts, and the presence of symptoms. The DIPSS score places patients into different risk categories (low, intermediate, or high), helping doctors estimate survival and recommend appropriate therapies.

Another tool is the MIPSS70 (Mutation-Enhanced International Prognostic Scoring System), which evaluates genetic mutations like JAK2, CALR, and MPL. This system may provide a more detailed understanding of your disease risk based on genetic factors.

What Can Your Role Be in Managing Myelofibrosis?

While many factors influencing myelofibrosis outcomes are outside your control, there are ways you can take an active role in managing your health:

\n
Regular checkups with your healthcare provider allow for early detection of changes in your condition and timely adjustments to your treatment plan.
\n
\n
Maintaining a healthy lifestyle with a balanced diet, regular exercise, and stress management can support your overall well-being and help you cope with the physical and emotional challenges of the disease.
\n
\n
Stay informed about new treatment options and clinical trials. Medical research is ongoing, and emerging therapies may offer new hope for patients with myelofibrosis.
\n

How Can Treatments Affect Outcomes?

Various treatment options are available for myelofibrosis, and the treatment choice can impact your outcomes.

\n
JAK inhibitors like ruxolitinib (Jakafi) are often used to manage symptoms and reduce spleen size. The study highlighted that the approval of ruxolitinib in 2011 significantly improved survival outcomes for myelofibrosis patients, highlighting the importance of access to new treatments.
\n
\n
Stem cell transplantation offers the potential for a cure but is usually only an option for younger, healthier patients due to its risks.
\n
\n
Supportive therapies such as blood transfusions or medications to address anemia, infection risk, and symptoms are commonly used to help manage myelofibrosis’s effects.
\n

Final Thoughts

Understanding the factors that can affect your outcomes with myelofibrosis can help you make informed decisions about your treatment and care. While it’s natural to feel anxious about your diagnosis, staying informed, working closely with your healthcare team, and taking steps to manage your health can empower you to navigate your health. Always discuss your concerns and options with your doctor, who can help you choose the best path forward based on your unique situation.

Keep track of your health by creating a free HealthTree account!

If you want to keep track of your labs, even if they were at different facilities, you can look at them all in one place by securely connecting your records to HealthTree. Or create a free account to see personalized treatment options, find clinical trials, connect with other myelofibrosis patients, and so much more for free!

CREATE MY FREE ACCOUNT

Source:

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Learn how Besremi works, how effective it can be, and possible side effects.

What is Besremi?

Besremi is currently one of the only PV treatments that targets the source of the cancer.

How is Besremi Administered?

You can receive a Besremi injection every three weeks. The starting dosage may differ for adults with PV who are not on hydroxyurea or transitioning from hydroxyurea, known as the titration phase.

How Effective is Besremi for PV?

80% of PV patients taking Besremi experienced their blood counts returning to normal.

What are the Side Effects of Besremi?

Conclusion

Stay Updated on the Latest Polycythemia Vera News

Are you interested in learning more about polycythemia vera? Click on the button below to read PV news articles.

Read PV News

Sources:

People with myelofibrosis often experience decreased red blood cells (anemia).

One of the points from their discussion that we'll focus on in this article is how to treat myelofibrosis-related anemia. Read their insights below.

Why Does Anemia Happen for Myelofibrosis Patients?

Many strategies exist for improving low red blood cell counts. Read about the methods agreed upon in the consensus program to alleviate myelofibrosis patients’ anemia.

When Should Anemia Treatment Start for Myelofibrosis Patients?

How Should Anemia Be Managed if Caused by Myelofibrosis or its Treatments?

Management of Treatment-Related Anemia

Some myelofibrosis treatments may cause anemia. If this is the case, your doctor may recommend reducing the current therapy dose for 4 to 6 weeks to manage the anemia.

Management of Myelofibrosis-Related Anemia

In severe cases where other treatments have failed, surgery to remove the spleen (splenectomy) may be considered.

See the below tables to learn more about these treatments.

The first table shows the current anemia treatments for myelofibrosis and how they work.

\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 Current Treatments \n	\n How it Works \n
\n Red blood cell transfusion \n	\n Receive an infusion of donor red blood cells to normalize levels \n
\n Recombinant ESA (erythropoiesis-stimulating agents) \n	\n Activate signals that create red blood cells \n
\n Danazol (androgens) \n	\n Stimulates the production of red blood cells \n
\n Remove the spleen (splenectomy) \n	\n Remove the spleen if it gets too big from trapped blood cells \n
\n Immunomodulatory (IMiD) treatments like thalidomide, lenalidomide, and pomalidomide \n	\n Helps the body produce red blood cells \n
\n JAK inhibitors like ruxolitinib, fedratinib, pacritinib, and momelotinib \n	\n Prevents overactive JAK signaling seen in myelofibrosis cells. Helps reduce spleen size \n

This next table shows emerging anemia treatments for myelofibrosis (those in clinical trials) and how they work.

\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 Emerging Treatments in Clinical Trials \n	\n How it Works \n
\n Luspatercept and KER-050 (TGF-β ligand traps) \n	\n Helps young red blood cells mature \n
\n Pelabresib (epigenetic modulators) \n	\n Reduces inflammation in the bone marrow to reduce anemia \n
\n PRM-151 (antifibrotic agents) \n	\n Reduces bone marrow scarring seen in myelofibrosis and supports the body’s regulation process of red blood cells \n
\n Imetelstat (telomerase inhibitors) \n	\n Helps red blood cells produce normally \n
\n Navitoclax (BCL-2/BCL-xL inhibitors) \n	\n Halts red blood cells from self-destructing to maintain mature red blood cell levels \n

Summary

If you don’t have a myelofibrosis specialist, consider adding one to your healthcare team today: Myelofibrosis Specialist Directory.

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Stay updated on myelofibrosis news with HealthTree. Subscribe to our newsletter today!

Myelofibrosis Newsletter

Sources:

The Event

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Key Takeaways for Myelofibrosis Patients and Caregivers

1. Personalized Treatment Selection Is Critical

\n
Case Study Insights:
A high-risk patient was discussed to illustrate how personalized treatment decisions bring hope. These decisions often involve weighing JAK inhibitors (JAKi), stem cell transplants (HSCT), or other therapies.
\n

2. Treatment Options for Myelofibrosis

Myelofibrosis treatment has expanded significantly in the past decade, especially with the approval of four JAK inhibitors. Here’s a summary of the highlights discussed during the session:

\n
JAK Inhibitors:
\n

\n
Pacritinib is effective in reducing spleen size.
\n
\n
Ruxolitinib is another option, especially for those with low blood counts. It’s being tested in clinical trials at lower doses.
\n
\n
Updates on Fedratinib (FREEDOM-2 trial) are coming soon, potentially providing more clarity for oncologists. This treatment could be really helpful for those with low blood counts.
\n

\n
Stem Cell Transplants (HSCT):
\n

\n
HSCT remains a cornerstone for patients with intermediate-1 or higher risk, offering long-term survival advantages.
\n
\n
New guidelines emphasize the use of haplo-identical donors, which is crucial in diverse populations with fewer matching relatives.
\n

3. Addressing Anemia in Myelofibrosis

Anemia is a common and serious complication in myelofibrosis, often requiring transfusions. Reducing transfusion dependence is a key treatment goal.

\n
Emerging Therapies:
\n

\n
The phase 3 INDEPENDENCE Trial is exploring the role of luspatercept in MF-associated anemia, with results expected next year.
\n
\n
Lower-dose JAK inhibitors, treatment schedule adjustments, or transfusions can also help manage anemia.
\n

4. The Role of New Mechanisms and Combination Therapies

Patients who don’t respond to JAK inhibitors may need alternative approaches. For example:

\n
New Mechanisms of Action: Drugs like selinexor and elritercept could provide options outside of current JAKi therapies.
\n
\n
Combination Therapies: While these hold promise, they are mostly limited to clinical trials today. Doublet or triplet therapies may become a viable option in the future as research progresses.
\n

5. Updated Guidelines and Innovations in HSCT

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What This Means for You

This session emphasized that myelofibrosis care is about more than just medications—it’s about developing a holistic and personalized treatment plan.

\n
Key Themes:
\n

\n
A detailed baseline assessment ensures the most appropriate treatment.
\n
\n
Exploring all available options, including clinical trials, is essential.
\n
\n
Advances in combination therapies and new drugs signal hope for the future.
\n

\n
Encouragement for Patients and Caregivers:
While managing myelofibrosis requires a great deal of care and consideration, the ongoing dedication to research and innovation provides hope for better outcomes.
\n

Looking Ahead

By understanding the nuances of myelofibrosis treatment shared during this session, patients and caregivers can better engage with their healthcare teams and make informed decisions about their care.

Stay tuned for more ASH coverage in the coming weeks as we reveal the recent results of breaking research in easy-to-understand language! Check it out here: HealthTree Conference Coverage