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.

Learn more about what causes MF.

Image of David D, a Community Voice Champion

…I noticed an unexpected lump in my abdominal region, which my doctor informed me was an enlarged spleen. This ultimately led to my diagnosis of myelofibrosis (MF)... –David D, Community Voice Champion

How Common Is MF?

About 16,000 to 18,500 people in the United States are living with MF.

Graphic of the U.S. with text that says - About 16k-18.5k PEOPLE IN THE U.S. CURRENTLY have MF - 50+ MORE COMMON IN PEOPLE OVER 50 Graphic of the U.S. with text that says - About 16k-18.5k PEOPLE IN THE U.S. CURRENTLY have MF - 50+ MORE COMMON IN PEOPLE OVER 50

Learn how myelofibrosis is diagnosed

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.

Get myelofibrosis resources and support.

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:

  • Age
  • 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.

Understand Your MF State of Mine

As you work with your Healthcare Professional to understand and assess your condition, it’s important to be aware of how you feel and how MF affects your daily life. Your symptoms, your blood counts, even your feelings can help you identify your MF State of Mine—or where you are on your journey with MF.

Regularly evaluating your myelofibrosis—and understanding your MF State of Mine—may help you recognize when something isn’t right. This can empower you to talk to your Healthcare Professional about your condition.

View helpful MF resources to help you get the conversation started

VIEW TRANSCRIPT

The doctor called me, and he told me that, yes, I did have myelofibrosis.

When I got my diagnosis, we were starting to realize the future was not going to look like what we thought it would.

I thought it would be like, you know, Sunday dinners and going to the ball games and things like that. But, it is going to be different.

(onscreen text) This is Marilyn’s MF STATE OF MINE…where she is on her journey with MF.

And I decided that I needed to choose to do something with it.

I’m Marilyn. I have a husband named Jack and one daughter and three grandchildren, currently down in Florida.

(onscreen text) Essential thrombocythemia (ET) is part of a group of rare, chronic blood cancers called “myeloproliferative neoplasms,” or MPNs.

I had ET for 30 years, and when I got diagnosed, the treatment for ET was take an aspirin and go on with your life.

I never knew that ET could turn into something that would be so serious…

(onscreen text) Myelofibrosis is also an MPN.

…and I had never heard about myelofibrosis.

(onscreen text) MF can occur on its own or as a result of progression from another MPN, like ET.

About three years ago, I was getting really tired. I couldn’t eat very well. We were on vacation there and we had been sleeping in this pullout bed, and my daughter looked at me and said, “What's the matter with the back of your legs?” And I was bruised from my knees to my ankles.

I kind of freaked out a little bit, and I knew enough to know about my blood disorder from the ET that that’s not normal bruising, and added to the fact how tired and how sweaty I was. There was just a lot of circumstances that made me stop and think that something's changing.

I knew I was sick. I mean I could feel it. I made an appointment to get my blood rechecked.

(onscreen text) An enlargement of the spleen is known as splenomegaly (splee-nuh-MEG-uh-lee).

They told me my spleen was enlarged.

My hematologist, he says, “I think it’s time we do another bone marrow biopsy.”

(onscreen text) In 2017, Marilyn was diagnosed with MF.

I did go to a specialist. They confirmed my diagnosis.

Most people don’t understand my disease—that I’m really sick.

(onscreen text) Myelofibrosis affects each person differently. Talk with your Healthcare Professional about your disease.

Physically, I’m able to get around, I go shopping, I do things like that. But, the parts that they don’t see, that Jack does see. He sees that I can’t walk up and down the stairs.

Physically, I’m able to get around, I go shopping, I do things like that. But, the parts that they don’t see, that Jack does see. He sees that I can’t walk up and down the stairs.

The hardest thing for me to do was give up my teaching job because I had to take a disability from school, and it was hard for Jack, you know, because he could see how I was hurting. It took me a couple months to get into a new normal.

(onscreen text) Your Healthcare Professional is always the best source for any medical advice or questions.

So, I was able to join this Facebook support group, and I found that very beneficial with connecting with people that had the disease. I started to realize that this isn’t a one-year sentence—that I had more life to go—and I can either choose to do something with it or I can sit here and feel sorry for myself.

For my current management plan, I get blood work done every month. I see my MPN specialist every three months, and I track my symptoms.

Just trying to maintain a healthy lifestyle helps me a lot manage the MF.

Measuring my spleen is a regular part of my exam. He just palpates under my rib cage and he measures to see how far out he's able to feel that spleen. It still causes me some issues.

Fatigue is my main symptom, and people are pretty good about, they know. I have friends that I go quilting with and we go away for the weekend. They know I may not be able to stay up as late as they do. And it’s okay.

Having myelofibrosis has made me look at things differently. You don't take as much for granted anymore. It's also provided me with opportunities that I didn't even know were possible.

I just try to keep my little head into the present because nobody is really guaranteed and nobody knows what's going to happen. I don’t want the disease to change who I am. I still want to go on my quilting weekends. I still want to do things with my husband. I still want to enjoy going places.

If I don’t make an effort to put myself out there and stay normal, they quit asking you to do things, and I don’t want that.

I would give someone newly diagnosed, I would tell them to learn what they can, but take a breath. I don’t know if I’m going to have 2 years or 10 years, but I don’t want people feeling sorry for me. I just want to be Marilyn.

(onscreen text) Understand your MF State of Mine.

Talk to your Healthcare Professional about where you are on your journey with MF.

Get free resources to help you talk to your Healthcare Professional about MF and also join the Voices of MPN community.

Visit VoicesofMPN.com

You can also visit Voices of MPN on Facebook, Twitter, Pinterest, and YouTube.

This video is sponsored by Incyte Corporation.

Voices of MPN and the Voices of MPN logo are registered trademarks of Incyte.

© 2019, Incyte Corporation. MAT-HEM-01189 11/19

Learn how Marilyn’s essential thrombocythemia (ET) transformed to myelofibrosis (MF).

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