Myelofibrosis Patient Stories

Myelofibrosis Stories

Myelofibrosis is a rare cancer of the bone marrow that starts with an abnormal production of blood cells. It’s one of three of the most common myeloproliferative neoplasms or MPNs.

Myelofibrosis, commonly referred to as “MF,” often leads to severe lack of healthy red blood cells, also known as anemia. That’s why common first symptoms of myelofibrosis include fatigue and weakness.

Explore below to hear from myelofibrosis patients on their experiences and top myelofibrosis specialists who share the latest in promising and emerging MF treatments and clinical trials.

What is myelofibrosis?

Myelofibrosis is a rare cancer of the bone marrow. Learn more about myleofibrosis symptoms, diagnosis, treatment and more.

→ Read more

Myelofibrosis patient stories

Stacy S.

Stacy S.

Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant
Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
Natalia's Myelofibrosis Story
Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.

Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)
Kristin D.

Kristin D.

Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant
Joseph C. feature profile

Joseph C.

Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.

Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Holly S.

Diagnosis: Primary myelofibrosis
Symptoms: Severe fatigue, throbbing pain in left calf, significant weight loss, itching and rashes, bruising, and shortness of breath
Treatment: Oral chemotherapy: hydroxyurea, Immunotherapy injections: peginterferon
Doug A. feature profile

Doug A.

Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)
Cathy T. feature profile

Cathy T.

Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant
Ben H.

Ben H.

Symptoms: None; caught at a routine blood test
Treatments: Hydroxyurea & aspirin, ruxolitinib
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids