Living with Myelofibrosis
By Cancer Clinical Trial Specialist / Myelofibrosis Neoplasms Blog / 2 Comments

Living with Myelofibrosis

Living with myelofibrosis can mean dealing with uncomforting symptoms, uncertainty, and treatment side-effects. Myelofibrosis is a rare blood cancer that affects the way the body produces blood cells. It starts in the bone marrow, a spongy tissue inside the bones that creates blood cells, and causes scars called fibrosis, which affect blood cell production. Myelofibrosis progresses slowly and sometimes will not show symptoms, making it hard to diagnose early.

For some patients living with myelofibrosis, painful symptoms can occur suddenly and indicate that something is wrong. For people with persistent indicators and symptoms that are worrisome, it is important to make an appointment with a doctor. To help the doctor diagnose what is wrong, or if you think you could have myelofibrosis, writing down all signs and symptoms that are experienced can help move things along.

Myelofibrosis Symptoms

In its early stages, it is common for myelofibrosis to develop slowly and show no signs or symptoms, but as normal blood cell production is interrupted the following symptoms can occur:

  • Fatigue and shortness of breath due to anemia (Lack of red blood cells)
  • Pain in the body (ribs, bones, joints)
  • Itchy skin
  • Easily bleeding and bruising
  • Weight loss
  • Fever
  • Blood clots
  • Swollen spleen
  • Nausea
  • Hair loss
  • Night sweats

Myelofibrosis Diagnosis and Causes

Myelofibrosis happens when bone marrow cells develop mutations in their DNA. It is not clear what causes this, but as red blood cells, white blood cells and platelets divide, the mutation is passed along, causing problems with blood production, usually resulting in a lack of red blood cells and overproduction of white blood cells.

Risk factors for myelofibrosis include:

  • Being over the age of 50
  • Having another blood cell disorder, such as essential thrombocythemia or polycythemia vera
  • Exposure to industrial chemicals like toluene and benzene
  • Radiation exposure

Myelofibrosis is diagnosed with a physical exam, blood tests, and bone marrow tests.

During a physical exam, a doctor may notice signs of the disease such as swollen lymph nodes, pain in the stomach indicating an enlarged spleen, and irregular blood pressure.

The doctor may also do a complete blood count (CBC) to see if the red blood cell level is normal. If the red blood cell level is below normal, and white blood cell and platelet counts are elevated, it could be an indication of myelofibrosis. Other blood tests that look for high levels of uric acid, lactate dehydrogenase, and bilirubin are also done. Elevated levels of these substances can also be an indication of myelofibrosis.

Two bone marrow tests, bone marrow aspiration and bone marrow biopsy, can help a doctor confirm a myelofibrosis diagnosis. They can be done at the same time.

  • Bone marrow aspiration: A needle is used to remove a small sample of bone marrow
  • Bone marrow biopsy: A needle is used to remove a small piece of bone filled with marrow from the hip

Living with Myelofibrosis & Myelofibrosis Treatments

Myelofibrosis is often treated based on symptoms. Two common inhibitor drugs used to treat myelofibrosis are fedratinib (Inrebic) and ruxolitinib (Jakafi). These drugs can ease symptoms that occur from this disease.

If a patient experiences anemia, these treatments can help:

  • Androgen therapy
  • Blood transfusions
  • Chemotherapy
  • Erythropoietin
  • Immunomodulators
  • Interferon alfa-2a
  • Steroids


Mayo Clinic




  • Louise Warren

    What statistics do you have showing who lives longer – those who get SCT’s, and those who don’t?

    • Cancer Clinical Trial Specialist

      Hello, thank you for reaching out to us, survival and outcomes really depend on a patient’s individual case, there are a few options available including clinical trials, one of our patient advocates would be happy to speak with you to go over those options. We can be reached by telephone 844-627-7246 or by email:

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