Living with Myelofibrosis

Today is Myelofibrosis Awareness Day, but what is Myelofibrosis, anyway?

Myelofibrosis (MF) is considered to be a rare form of blood cancer, and a chronic, progressive disease. “Fibrosis” indicates scarring within bone marrow, which results in an interference to blood cell production. While it is a cancer, MF is often treated as a chronic disease would be – with frequent monitoring and attention to quality of life while living with the disease.

An MF diagnosis may be for primary or secondary myelofibrosis, however, symptoms for both diagnoses are similar:

  • Shortness of breath and feelings of fatigue due to low red blood cell count (anemia).
  • Easy bruising or bleeding (thrombocytopenia) due to decreased platelet production
  • Distended abdomen and pain below lower left rib due to enlarged spleen
  • Bone or joint pain
  • Weight loss

People with Myelofibrosis may show few, if any, symptoms at the time of their diagnosis and for this reason, may be told by their doctor to “watch and wait” before beginning any treatment. While this seems counter-intuitive, the strategy can benefit the patient’s quality of life, due to the side effects of conventional cancer treatments like chemo or radiation, as well as MF-specific treatment, which can include removal of the spleen and/or bone marrow transplants.

There are now drug therapies that exist for patients with MF, which can help alleviate symptoms as the disease progresses, and many doctors will also recommend changes in diet and exercise. If you have more questions about the symptoms, diagnosis, treatment options, side effects and resources for living with MF, you can download a free copy of Frankly Speaking About Cancer: Myelofibrosis here. You can also join the MPN Education Foundation’s online support group and watch a video about one woman’s journey with Myelofibrosis.

About Ivy Ahmed

Ivy Ahmed is the Vice President of Education and Outreach at the Cancer Support Community. In this position she oversees the development, promotion and implementation of national CSC education programs. She also oversees the development of online educational materials and national professional outreach related to education programs. Ivy has over 15 years in public health and has worked in both the private and public sectors promoting cancer education. She served as a health educator and case manager with the District of Columbia’s Breast and Cervical Cancer Program and as the health communications manager with Lockheed Martin on a contract to support to the NCI’s Cancer Information Service. Ivy holds two degrees from the George Washington University, a Bachelor in Literature and a Master of Public Health.

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