{"_101pages":[{"data":{"bannerImageTitle":"How Is Myelofibrosis Diagnosed?","bannerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2F101%20Diagnosed_81be942c-fe5b-4e7d-a602-b6d4dc33e8b7.jpg?alt=media","createdAt":{"_type":"Date","value":"Sat Aug 12 2023 20:31:42 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"disease101":true,"htmlContent":"

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. A precise myelofibrosis diagnosis requires blood, bone marrow, imaging, genetic tests, physical examination by a medical professional, and directed questioning to discover details that can lead to an accurate diagnosis.

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What are the Blood Tests for Myelofibrosis?

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The blood tests are usually performed by a nurse who draws blood with a needle from a vein, usually in the arm. This blood sample is then sent to the lab to be analyzed according to your doctor’s indications. The most common blood tests indicated when analyzing myelofibrosis are:

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Complete blood count (CBC): This test reports the number of red blood cells, white blood cells, and platelets in your blood. In myelofibrosis, the number of these cells can be abnormal.
Blood smear: A blood sample is examined under a microscope. Myelofibrosis can cause changes in the appearance of your blood cells.
Blood chemistry: This test may be indicated to assess the metabolism of blood cells with bilirubin and uric acid, amongst other values. It can also be used to look for inflammation indicators like lactate dehydrogenase.

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What are the Bone Marrow Tests for Myelofibrosis?

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The bone marrow aspiration and biopsy tests involve taking a small sample of the bone marrow in your hipbone to be examined under a microscope. This test will confirm a myelofibrosis diagnosis because, in this condition, the bone marrow is often fibrous and scarred.

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What are the Genetic Tests for Myelofibrosis?

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The genetic analysis of the abnormal blood or bone marrow cells looks for mutations related to myelofibrosis, such as JAK2, CALR, and MPL. Your attending oncologist indicates these tests, and each of them is performed differently in a lab, but the sample required can be a blood sample or a bone marrow biopsy. The genetic tests that analyze the fibrous tissue or abnormal blood cells are:

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Immunohistochemistry
Flow cytometry
FISH (Fluorescent In Situ Hybridization)
Karyotype
Cytogenetics
NGS (Next Generation Sequencing)
PCR (Polymerase Chain Reaction)

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The goal of these tests is to find out what has caused the scarring tissue to form in the bone marrow and if there aren’t other causes that may explain it after thorough questioning by your doctor. They will determine which tests are more efficient in finding the problem.

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What are the Imaging Tests for Myelofibrosis?

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When doctors suspect myelofibrosis, sometimes, before performing a bone marrow biopsy, they will ask for an imaging test to look at the internal structure of the bones or organs they might feel differently in the physical examination. For example, the spleen, when enlarged, is palpable.

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Ultrasound: This is indicated to analyze the spleen, which is commonly enlarged in myelofibrosis. It can measure the size, shape, and circulation of the blood vessels.
Computed Tomography (CT) scan: This test creates detailed pictures of your body. It can help identify any abnormalities in your spleen or liver, and sometimes, it can help determine the extent of bone marrow affected by fibrosis. And is sometimes useful when performing a bone marrow biopsy.
X-ray: It’s the oldest diagnostic imaging method; for myelofibrosis diagnosis, it can be used to examine parts of the body where the bone seems affected.
Magnetic resonance imaging (MRI): Can help to measure the damage from myelofibrosis in the bone marrow, as it can show the marrow inside bones and the soft tissues around, including blood vessels and nerves.

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Diagnosing myelofibrosis involves a comprehensive evaluation that includes blood tests, bone marrow tests, and imaging tests, along with a detailed physical examination and medical questioning by a doctor. The diagnostic tests help identify the characteristic signs of myelofibrosis, such as abnormal blood cells, fibrous bone marrow, and an enlarged spleen. The results of these tests, along with your symptoms and medical history, are used to make a diagnosis.

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Expanding knowledge 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 myelofibrosis so that patients’ outcomes can be improved.

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If you want to stay updated with myelofibrosis treatment advances, join our newsletter!

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Subscribe to NEWSLETTER

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Source:

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https://ashpublications.org/blood/article/141/16/1954/493326/Myelofibrosis

\n","metaDescription":"Myelofibrosis is diagnosed with blood, bone marrow, and imaging tests which help identify abnormal blood cells, fibrous bone marrow, and an enlarged spleen.","metaTitle":"How Is Myelofibrosis Diagnosed?","ogTitle":"How Is Myelofibrosis Diagnosed?","seoKeywords":"Myelofibrosis Diagnosis,Blood Tests for Myelofibrosis,Bone Marrow Tests for Myelofibrosis,Imaging Tests for Myelofibrosis,Complete Blood Count,Blood Smear,Genetic Testing,Bone Marrow Aspiration and Biopsy,Cytogenetic Analysis,Ultrasound,Computed Tomography Scan,Abnormal Blood Cells,Fibrous Bone Marrow,Enlarged Spleen,Diagnosing Myelofibrosis,Myelofibrosis Symptoms,Myelofibrosis Medical History","slug":"how-is-myelofibrosis-diagnosed","status":"ACTIVE","tags":"Myelofibrosis Diagnosis,Blood Tests for Myelofibrosis,Bone Marrow Tests for Myelofibrosis,Imaging Tests for Myelofibrosis,Complete Blood Count,Blood Smear,Genetic Testing,Bone Marrow Aspiration and Biopsy,Cytogenetic Analysis,Ultrasound,Computed Tomography Scan,Abnormal Blood Cells,Fibrous Bone Marrow,Enlarged Spleen,Diagnosing Myelofibrosis,Myelofibrosis Symptoms,Myelofibrosis Medical History","title":"How Is Myelofibrosis Diagnosed?","updatedAt":{"_type":"Date","value":"Thu Aug 08 2024 23:15:51 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/pages/QujhjUpZWqPuC7o1B6mN"},"snapshot":{"exists":true,"id":"QujhjUpZWqPuC7o1B6mN","ref":{"_type":"DocumentReference","path":"apps/community/pages/QujhjUpZWqPuC7o1B6mN"}}},{"data":{"bannerImageTitle":"What are Treatments for Myelofibrosis?","bannerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2FTreatments_d12d8b64-cafa-46f1-9b06-3d1f23f65913.jpg?alt=media","createdAt":{"_type":"Date","value":"Fri Sep 01 2023 15:49:43 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"disease101":true,"htmlContent":"

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 can lead to symptoms like weakness and fatigue. Common findings in lab tests or physical examination include anemia and an enlarged liver and spleen.

Myelofibrosis is a chronic disease that can impact in quality of life. However, with appropriate management and treatment, symptoms can be controlled. Treatment options for myelofibrosis include medication, blood transfusions, stem cell transplants, and other supportive therapies.

What Medications are Approved for Myelofibrosis?

Medications are often used to manage symptoms and improve the quality of life for patients with myelofibrosis. But they are also helpful in eliminating abnormal cells or targeting specific sites of the cell that may be causing myelofibrosis to spread.

Ruxolitinib (Jakafi): This was the first drug approved by the FDA specifically for myelofibrosis. It works by blocking the JAK1 and JAK2 enzymes, which regulate blood and immune cell production. Ruxolitinib can reduce spleen size, alleviate symptoms, and improve survival in patients with myelofibrosis.
Fedratinib (Inrebic): is a JAK inhibitor approved by the FDA for treatment of adult patients with intermediate-2 or high-risk primary or secondary myelofibrosis
Momelotinib (Ojjaara): Is also a JAK inhibitor which function is to increase the red blood cell production and reduce inflammation that could lead to more fibrosis in the bone marrow. To know more about momelotinib we have a comprehensive article here.
Pacritinib (Vonjo): is for patients who have myelofibrosis and low platelet levels (thrombocytopenia)
Interferon-α: This therapy can help reduce the size of the spleen and potentially stop the bone marrow from becoming fibrotic. It's often used in younger patients with a lower risk of disease progression. To know more about interferons role in myelofibrosis click here.
Hydroxyurea: This chemotherapy drug can help control an enlarged spleen and high white blood cell counts in myelofibrosis.

When Should Myelofibrosis Patients Receive a Blood Transfusion?

Blood transfusions can help alleviate anemia symptoms like weakness, fatigue, easy bruising, or difficulty breathing. Transfusions of red blood cells or platelets can help alleviate symptoms and prevent bleeding problems. However, not all patients will receive transfusions. The indication for it depends on lab values and other chronic conditions for example, if the hemoglobin levels are less than 5 g/dL and if a patient has risk factors like heart failure, heart disease, arrhythmia, and COPD or lung failure, they can receive a transfusion if their hemoglobin is less than 6 g/dL.

Can Myelofibrosis Be Cured With a Stem Cell Transplant?

Stem cell transplant, also known as bone marrow transplant, is the only treatment currently known to potentially cure myelofibrosis. This procedure involves replacing your diseased bone marrow with healthy bone marrow from a donor. However, stem cell transplants come with significant risks, including graft-versus-host disease and infections, and are typically reserved for younger patients and those with severe disease.

What are the Supportive Therapies for Myelofibrosis?

Supportive therapies aim to relieve symptoms and improve quality of life. These may include:

Erythropoiesis-stimulating agents: These drugs can help stimulate the bone marrow to produce more red blood cells
Iron chelation therapy: This treatment is used to remove excess iron from the body, a common problem in patients who require frequent blood transfusions
Immunomodulators: like thalidomide, lenalidomide and pomalidomide can be used to improve anemia and spleen size, however they require close monitoring because of the side effects and withdrawal reactions.
Androgens: hormones like nandrolone, fluoxymesterone, methandrostenolone, and oxymetholone improve anemia in 30% to 60% of patients. They are particularly helpful in patients who don’t have a spleen and can also help improve low platelet levels

Want to Learn More About Myelofibrosis?

Expanding knowledge for all patients and discovering the best time to start treatment is possible thanks to research. And you can actively participate by staying informed with the latest myelofibrosis news, recruiting trials, surveys and more!

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Myelofibrosis is a serious bone marrow disorder that disrupts the body's normal production of blood cells. The result is extensive scarring in your bone marrow, leading to severe anemia, weakness, fatigue, and often, an enlarged liver and spleen. The signs and symptoms of myelofibrosis usually develop slowly and may include:

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Fatigue and weakness: This is due to anemia, which is a shortage of red blood cells. This can make you feel tired and weak
Shortness of breath: This is also a result of anemia. Your body may not have enough red blood cells to deliver oxygen to your tissues, causing you to feel short of breath
Pale skin: A decrease in red blood cells can cause your skin to look paler than normal
Easy bruising or bleeding: This is due to a decrease in platelets, which are needed for blood clotting
Fever: This can be a sign of infection, which can occur because the disease weakens the immune system
Bone pain: This is a less common symptom, but some people with myelofibrosis experience pain in their bones or joints
Night sweats: These can be a result of the body trying to fight off an infection or due to hormonal imbalances caused by the disease
Enlarged spleen (splenomegaly): When the bone marrow can't make enough normal cells, the spleen helps out by starting to produce them, causing the spleen to grow larger. This can result in pain or a feeling of fullness below the ribs on the left side

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Seek Care For Your Myelofibrosis

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Seeking medical attention promptly if you are experiencing symptoms related to your myelofibrosis is of utmost importance. Prompt initiation of treatment is essential to achieve the best possible outcomes. Delaying treatment can allow the myelofibrosis to progress, making it more challenging to achieve remission.

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Medical attention can help manage and alleviate your symptoms and side effects and allow doctors to tailor a myelofibrosis treatment plan that allows you to live as comfortably as possible. Doctors can adjust treatment as needed and provide supportive care to manage treatment-related side effects and complications. Coping with a cancer diagnosis is emotionally and psychologically challenging. You don't have to deal with side effects alone. In addition to discussing with your medical team, if you are experiencing myelofibrosis symptoms and want to know what has worked for other blood cancer patients, visit HealthTree's Side Effect Solutions tool. Here you can search for the symptoms you are experiencing and read about what's worked (and what hasn't worked) for patients just like you.

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Want to Learn More About Myelofibrosis?

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Keep reading HealthTree for Myelofibrosis's 101 pages!

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What Is Myelofibrosis?
How Is Myelofibrosis Diagnosed?
How Long Will I Live With Myelofibrosis?
How Is Myelofibrosis Staged And Classified?
What Are Treatments For Myelofibrosis?

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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. Staging and classifying myelofibrosis is based on the severity of symptoms, complications, and the patient's overall health status. The International Prognostic Scoring System (IPSS) and the Dynamic International Prognostic Scoring System (DIPSS) are commonly used to stage and classify myelofibrosis.

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International Prognostic Scoring System (IPSS)

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Commonly referred to as IPSS, is used by doctors when first diagnosing myelofibrosis to predict the disease course and create the best treatment strategy for patients. This score is based on the following risk factors:

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Age over 65 years
Presence of constitutional symptoms
Hemoglobin level less than 10 g/dL
Leukocyte count greater than 25 x 10^9/L
Circulating blasts 1% or greater.

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Each risk factor a patient has is assigned one point, and the total score determines the risk category: low (0 points), intermediate-1 (1 point), intermediate-2 (2 points), and high (3 or more points).

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Dynamic International Prognostic Scoring System (DIPSS)

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The DIPSS re-evaluates the myelofibrosis stage at any time after diagnosis. This is useful for patients monitoring their treatment outcomes and overall health. This scoring system includes the same risk factors as the IPSS but assigns two points for hemoglobin levels less than 10 g/dL and for circulating blasts 1% or greater.

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DIPSS-plus classifies patients with myelofibrosis into 4 risk categories:

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Low risk (0 points), with a median survival of 15.4 years
Intermediate-1 risk (1 point), with a median survival of 6.5 years
Intermediate-2 risk (2-3 points), with a median survival of 35 months (2.9 years)
High risk (4-6 points), with a median survival of 16 months (1.3 years)

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Besides IPSS and DIPSS other scoring systems help doctors stage a patient according to the genetic findings, allowing a more accurate prognosis and a better treatment strategy that focuses on a patient’s individual characteristics.

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Mutation-Enhanced International Prognostic Scoring System (MIPSS70)

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MIPSS70 classifies patients with myelofibrosis as being at low, intermediate, or high risk according to the following 3 genetic and 6 clinical risk factors:

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Absence of CALR type 1/like mutations
Presence of any high-molecular-risk mutation, such as in ASXL1, SRSF2, EZH2, or IDH1/2
Presence of 2 or more high-molecular-risk mutations
Hemoglobin level below 10 g/dL
Leukocyte count above 25 × 10 ⁹/L
Platelet count below 100 × 10 ⁹/L
Percentage of circulating blasts of 2% or higher
Bone marrow fibrosis grade 2 or higher
Symptoms like: fever, lack of appetite, headache and muscle or bone pain, general body discomfort

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Genetically Inspired Prognostic Scoring System (GIPSS)

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GIPSS is based exclusively on genetic risk factors:

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VHR karyotype
Unfavorable karyotype
Absence of CALR type 1/like mutation
Presence of ASXL1, SRSF2, and U2AF1 Q157 mutations

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GIPSS can help with prognosis and guide treatment decisions. Patients at low risk may be managed with long-term observation, whereas an allogeneic stem cell transplant may be considered for patients at high risk.

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It classifies patients with myelofibrosis into 4 risk categories:

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Low (0 points), with a median survival of 26.2 years (94%)
Intermediate-1 risk (1 point), with a median survival of 8 years (73%)
Intermediate-2 risk (2 points), with a median survival of 4.2 years (40%)
High (3 or more points) with a median survival time of 2 years (14%)

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Myelofibrosis can be divided into three phases: prefibrotic, overtly fibrotic, and advanced phase.

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How Does Myelofibrosis Develop?

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Myelofibrosis typically develops in three stages, each with varying severity and associated symptoms. Understanding these stages—from the initial prefibrotic phase to advanced myelofibrosis—can help patients and caregivers better anticipate the progression of the disease and explore treatment options tailored to each phase

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Prefibrotic Myelofibrosis

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In the prefibrotic phase, There is minimal or no noticeable bone marrow fibrosis (scarring). The bone marrow is hypercellular; patients may have mild anemia and splenomegaly. This phase can last for several years.

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Overtly Fibrotic Myelofibrosis

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Sometimes referred to as primary myelofibrosis if there is no other cause attributing to scarring in the bone marrow. In this phase, the bone marrow becomes fibrotic, and the production of blood cells is impaired. Patients may have severe anemia, thrombocytopenia, and marked splenomegaly. This phase can last for several years to decades.

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Advanced Myelofibrosis

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In advanced myelofibrosis, the disease progresses to acute myeloid leukemia (AML). Patients may have severe anemia, thrombocytopenia, and leukocytosis. The survival rate is often low for these patients, but continuous research is required to offer them more treatment options to improve their survival.

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If you want to stay updated with myelofibrosis treatment advances, join our newsletter!

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SUBSCRIBE TO NEWSLETTER

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\n","metaDescription":"Learn about the staging and classification of myelofibrosis. Understand the IPSS and DIPSS scoring systems and the disease's three phases.","metaTitle":"How is Myelofibrosis Staged and Classified?","migrated":true,"migratedSource":"ai-create-diseases","ogTitle":"How is Myelofibrosis Staged and Classified?","seoKeywords":"Staging of Myelofibrosis,Classification of Myelofibrosis,Myelofibrosis bone marrow disorder,International Prognostic Scoring System,IPSS,Dynamic International Prognostic Scoring System,DIPSS,Risk factors of Myelofibrosis,Phases of Myelofibrosis,Prefibrotic Phase,Overtly Fibrotic Phase,Advanced Phase of Myelofibrosis,Acute myeloid leukemia,Symptoms of Myelofibrosis,Complications of Myelofibrosis,Myelofibrosis diagnosis,Myelofibrosis treatment,Myelofibrosis survival rate","slug":"how-is-myelofibrosis-staged-and-classified","status":"ACTIVE","tags":"Staging of Myelofibrosis,Classification of Myelofibrosis,Myelofibrosis bone marrow disorder,International Prognostic Scoring System,IPSS,Dynamic International Prognostic Scoring System,DIPSS,Risk factors of Myelofibrosis,Phases of Myelofibrosis,Prefibrotic Phase,Overtly Fibrotic Phase,Advanced Phase of Myelofibrosis,Acute myeloid leukemia,Symptoms of Myelofibrosis,Complications of Myelofibrosis,Myelofibrosis diagnosis,Myelofibrosis treatment,Myelofibrosis survival rate","title":"How is Myelofibrosis Staged and Classified?","updatedAt":{"_type":"Date","value":"Mon Aug 19 2024 18:54:27 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/pages/VpkoGQowjlD3S6VxRcx6"},"snapshot":{"exists":true,"id":"VpkoGQowjlD3S6VxRcx6","ref":{"_type":"DocumentReference","path":"apps/community/pages/VpkoGQowjlD3S6VxRcx6"}}},{"data":{"bannerImageTitle":"How Long Will I Live With Myelofibrosis?","bannerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2FHow%20Long%20Will%20I%20Live_f7aa3239-a649-4e51-a47b-7470f242d92e.jpg?alt=media","createdAt":{"_type":"Date","value":"Wed Aug 16 2023 16:38:49 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"disease101":true,"htmlContent":"

What is the Life Expectancy for Someone with Myelofibrosis?

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Myelofibrosis is a type of myeloproliferative neoplasm (MPN) with a median survival of 6 years. A median is a midpoint, which means that some people live less than six years, and about the same number of people can live longer than six years. Overall, fewer than 20% of patients with myelofibrosis are predicted to survive longer than 10 years. However, current advancements in myelofibrosis treatment are improving patient prognosis.

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The prognosis for myelofibrosis varies widely depending on several factors:

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Disease stage: Myelofibrosis has different stages, ranging from early to advanced stages. Patients with early-stage disease generally have a better prognosis than those with advanced-stage disease.
Age: Age can impact prognosis, with older patients potentially facing more complications and challenges in managing the disease. Most patients are diagnosed at approximately 65 years.
Symptoms and complications: Prognosis is influenced by the severity of symptoms and complications, such as an enlarged spleen or recurrent infections.
Genetic mutations: Specific genetic mutations, such as mutations in genes like JAK2, CALR, or MPL, can significantly impact prognosis by affecting disease progression and treatment response.
Other health conditions, like cardiovascular diseases, can complicate the management of myelofibrosis and impact overall health.
Response to treatment: Advances in treatment options, such as targeted therapies and bone marrow transplantation, have led to better outcomes for many people with myelofibrosis. However, individual responses to treatment can vary, and how well a person responds to and tolerates the treatment can greatly impact their prognosis.
Transformation to acute leukemia: In some cases, myelofibrosis can transform into acute leukemia, which typically has a poorer prognosis.

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What Causes Death in Myelofibrosis?

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The most common causes of death in patients with myelofibrosis include infection, bleeding, heart failure, mortality following spleen removal surgery, and myelofibrosis transforming into acute myeloid leukemia (AML). Other causes of mortality include kidney failure, liver failure, and blood clots. Most causes of death are disease or treatment-related; however, others are related to pre-existing conditions.

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How Do Age and Sex Impact Prognosis?

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Although myelofibrosis can occur at any age, it primarily affects individuals older than 50 years, with a median age at diagnosis of approximately 65 years. Older age correlates with shorter survival in patients with myelofibrosis. Patients aged 60 or younger at diagnosis generally have a less severe form of the disease, making them more likely to survive for over 20 years. However, patients diagnosed with intermediate or high-risk primary myelofibrosis will have a poorer prognosis (usually less than 5 years survival), regardless of age.

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It has been observed a higher diagnosis of primary myelofibrosis in men than in women, with a 3:2 ratio. Amongst patients with better prognoses, women with primary myelofibrosis survived longer than men.

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How Does Prognosis Change When Patients Have Other Diseases?

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Since myelofibrosis mainly impacts an older population, it is often accompanied by chronic health conditions, also referred to as comorbidities.

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Some of these pre-existing conditions are linked with the most impactful effects on treatment selection and overall survival, including high blood pressure, high cholesterol, smoking, hepatitis C, diabetes, kidney disease, and lung disease.

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A recent study on patients with primary and secondary myelofibrosis examined the impact of common comorbidities on patient survival. The study showed that, in some cases, the presence of these comorbidities directly affected risk assessment and treatment selection. For example, it could mean that a patient may not be eligible for bone marrow transplantation, which is currently considered the only potential curative option.

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The diseases that have a greater impact on reduced survival are kidney disease and other renal complications, severe infectious complications, and cardiopulmonary conditions such as pulmonary hypertension.

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Primary and Secondary Myelofibrosis Have Different Prognosis?

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The terms primary and secondary differentiate cases of myelofibrosis that develop on their own from those that originate from other blood cancers, such as polycythemia vera and essential thrombocythemia, both types of MPN.

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The mortality risk of secondary myelofibrosis (sMF) is higher than in patients diagnosed with primary myelofibrosis (PMF). Polycythemia vera and essential thrombocythemia are generally considered to be less aggressive MPN than primary myelofibrosis. However, there are differences in genetic mutations between patients with secondary myelofibrosis that affect the disease progression.

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Other risk factors can contribute to a poorer prognosis of primary myelofibrosis. For example, transformation into leukemia occurs in 10% to 20% of patients with primary myelofibrosis within the first 10 years. On the other hand, approximately 70% of patients with primary myelofibrosis show an increased density of the bone marrow's smallest blood vessels, which is also associated with poor survival.

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What Tools Can Help Predict the Risk and Survival of a Patient with Myelofibrosis?

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Myelofibrosis can progress differently for each person. To help predict your individual outlook, doctors use risk stratification scores. These scoring systems combine various factors, including age, blood counts, symptoms, and genetic mutations, to estimate your risk of developing serious complications, the probability of relapse, needing further treatment, or your overall survival. While these scores are valuable tools, they have limitations, and it's important to work with your medical team to interpret them in the context of your own health journey.

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In myelofibrosis, several scoring systems are used and continuously reviewed for accurate risk stratification of patients: the International Prognostic Scoring System (IPSS), the DIPSS-plus, the Mutation-Enhanced International Prognostic Scoring System (MIPSS-70, used to evaluate potential candidates for allogeneic stem cell transplant), and the Genetically Inspired Prognostic Scoring System (GIPSS).

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Continue reading about each myelofibrosis risk score system:

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How Does Treatment Response Impact Life Expectancy?

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The only potentially curative treatment for myelofibrosis is a stem cell transplant. The cure rate with this treatment can be between 30% and 65%, but this comes at an increased mortality risk. The 3- to 5-year survival rate for patients with myelofibrosis who underwent a stem cell transplant ranges from 45% to 70%; relapse and transplant-related mortality typically occur within the first 2 years after treatment.

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To continue learning about myelofibrosis, subscribe to HealthTree for Myelofibrosis newsletter!

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Stay updated with the latest advances with our news articles, register for our patient webinars, and explore all our free resources.

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SUBSCRIBE TO HEALTHTREE FOR MYELOFIBROSIS

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Sources:

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What Is Myelofibrosis?

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Myelofibrosis is a rare and chronic bone marrow disorder. It is characterized by the abnormal development and growth of blood cells in the bone marrow, leading to the formation of scar tissue (also called fibrosis) within the marrow. This disrupts the normal production and function of blood cells.

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In myelofibrosis, there is a mutation in the stem cells, which are responsible for producing red blood cells, white blood cells, and platelets. This mutation causes an overproduction of abnormal blood cells, particularly megakaryocytes (a type of bone marrow cell that produces platelets). These abnormal cells release growth factors that trigger the deposition of fibrous tissue in the bone marrow.

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As the fibrosis progresses, it replaces the healthy bone marrow, which impairs its ability to produce an adequate number of blood cells. Consequently, the bone marrow attempts to compensate by moving the production of blood cells to other organs, such as the spleen and liver, leading to their enlargement.

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In advanced stages, it can also lead to complications such as portal hypertension (high blood pressure in the portal vein that carries blood from the intestines to the liver) and an increased risk of developing acute leukemia.

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What are the Different Types of Myelofibrosis?

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Different types of myelofibrosis are primarily categorized based on their origin and progression. The two main types are:

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Primary myelofibrosis (PMF): It is often called idiopathic myelofibrosis, meaning its cause is unknown. It is considered a primary disease of the bone marrow.
Secondary myelofibrosis: Some cases of myelofibrosis may develop as a secondary condition in patients who previously had bone marrow scarring conditions or blood cell cancers that affect the bone marrow; in this category, polycythemia vera and essential thrombocytopenia are considered important triggers for developing myelofibrosis.

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Why Do People Get Myelofibrosis?

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There is no direct cause because developing myelofibrosis can be the result of combined elements. Certain factors are believed to increase the risk of developing this disease, including:

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Age: Myelofibrosis is more commonly diagnosed in older adults, with the majority of cases occurring in individuals over the age of 50
Gender: Males are slightly more likely than females to get myelofibrosis
Genetic mutations: Certain genetic mutations have been associated with an increased risk of developing myelofibrosis. Mutations in genes such as JAK2, CALR, and MPL are commonly found in individuals with myelofibrosis
Previous blood disorders: Individuals who have had other myeloproliferative neoplasms (MPNs), such as polycythemia vera (PV) or essential thrombocythemia (ET), may be at an increased risk of developing myelofibrosis
Exposure to radiation or chemicals: Prolonged exposure to high levels of radiation or certain chemicals may increase the risk of developing myelofibrosis
Family history: A family history of myeloproliferative disorders or blood cancers may contribute to an individual's susceptibility to myelofibrosis
Immune system disorders: Some autoimmune diseases or disorders that affect the immune system may be associated with an increased risk of myelofibrosis

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It's important to note that having one or more risk factors does not mean that a person will definitely develop myelofibrosis. Many people with these risk factors never develop the disease, and many people who do develop myelofibrosis have no known risk factors.

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Is Myelofibrosis Considered Cancer?

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Yes, it is considered a type of cancer under the umbrella of myeloproliferative neoplasms, a group of diverse cancers that affect normal bone marrow function. Hematologists and oncologists study and treat myelofibrosis.

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Is Myelofibrosis a Type of Leukemia?

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Although it is officially classified as a type of myeloproliferative neoplasm, it can be considered a chronic leukemia due to the characteristics of disease evolution and because it affects the bone marrow, which is a blood-forming tissue.

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Join the HealthTree for Myelofibrosis Community!

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Awareness of your health status, a biweekly newsletter for your disease, attend patient webinars, access to free resources to learn about self-advocacy and the latest on myelofibrosis treatment, and more!

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subscribe to myelofibrosis newsletter

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Want to Learn More About Myelofibrosis?

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Keep reading HealthTree for Myelofibrosis's 101 pages!

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In partnership with HealthTree, chapters provide support, education, and raise revenue to cure diseases","title":"Join a local chapter","url":"https://healthtree.org/myelofibrosis/community/chapters"},{"callToAction":"Donate to HealthTree","description":"Our core mission is to provide as many patient resources possible to any and all underserved communities in the US and eventually worldwide.","title":"Donate to HealthTree, a nonprofit organization","url":"https://give.healthtree.org/give/628617/#!/donation/checkout?c_src=website_donate_button"}],"news":[{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/dtN24frUcPS1CRElyXh1"},"category":{"_type":"DocumentReference","path":"apps/community/categories/j4bWXiDzhdlhMFvaeXoc"},"createdAt":{"_type":"Date","value":"Mon Dec 16 2024 19:09:18 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},"diseases":[{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"}],"headerImageUrl":"https://healthtree.org/images-resize?imageUrl=https%253A%252F%252Ffirebasestorage.googleapis.com%252Fv0%252Fb%252Fhealthtree-production.appspot.com%252Fo%252Fgallery%25252Fpublic%25252FASH%252520conference_32d843e6-1c22-4dd1-83f8-0d26ec8eb062.JPG%253Falt%253Dmedia","htmlContent":"

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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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.
\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:

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JAK Inhibitors:
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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:

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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

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.

\n
Key Themes:
\n

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A detailed baseline assessment ensures the most appropriate treatment.
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\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

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 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.
\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.

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.”
\n

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.
\n

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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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.
\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?

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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Sources:

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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:

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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

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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

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

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.

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

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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

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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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.
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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?

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: