What Is MF?
Myelofibrosis (MF) is a rare, chronic blood cancer. It can also "progress," or get worse over time. For example, new symptoms may appear or existing symptoms may get worse.
MF is part of a group of diseases called "myeloproliferative neoplasms," or MPNs. Healthcare Professionals sometimes call this condition a bone marrow cancer or blood cancer. Bone marrow is a spongy tissue inside of the bone, and is the primary place where blood cells are made. People with MF have a defect in their bone marrow that results in an abnormal production of blood cells, causing scar tissue to form.
MF can result from a progression of other bone marrow diseases or it can occur on its own. This is known as primary myelofibrosis.
Don't be afraid to talk to your doctor. You have to be proactive. You need to inform them what's going on in your life. You need to tell them how you're feeling. –Louise, MF Community Member
How Common Is MF?
About 16,000 to 18,500 people in the United States are living with MF.
How Is MF Managed?
To try to help control the signs and symptoms of MF, Healthcare Professionals use therapies such as blood transfusions, radiation, removal of the spleen, and stem cell transplantation. People with MF may be prescribed other treatments, including but not limited to chemotherapy drugs.
What Is the Prognosis for People With MF?
Each individual journey with MF is unique, and how it may change over time can vary from person to person. It often develops slowly, which may allow some people to live with MF for years without symptoms. However, in other people it may worsen over time. Regular monitoring and medical supervision can help identify signs of disease progression and help minimize the risk of complications.
Factors that may be used to help Healthcare Professionals estimate survival can include:
- Symptom burden
- Blood counts (including hemoglobin, white blood cells, and circulating blast cells)
Prognosis is based upon your individual risk level.
Your medical situation should be evaluated by your Healthcare Professional, who is the best source of information about life expectancy with MF.
Speak Up—and Spell Out How Your MF Makes You Feel
When you’re living with MF, you may find yourself saying that you’re fine—even when you might not be. But when you don’t speak up and share how you really feel, you may miss out on the opportunity to get the care and support that you need and deserve.
Remember, changes in your MF symptoms could be a sign that your MF is changing, too. So be sure to spell out how you really feel. Because fine is not enough.