Managing Myelofibrosis

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Myelofibrosis (MF), is a type of myeloproliferative neoplasm (MPN), which is a type of blood cancer. Myelofibrosis is a rare blood cancer that is chronic, meaning that it may stay with you throughout your life. This type of blood cancer occurs when scar tissue forms in your bone marrow and impairs its ability to produce normal blood cells.

What causes MF?

MF is linked to changes in certain genes where the bone marrow produces abnormal stem cells due to a mutation in the DNA. As the cells divide, they pass along the mutation into new cells and eventually, the abnormal cells overpower the normal cells and disrupt the production of your red cells, white cells and platelets. MF is most common is people over the age of 50.

If you think you may have MF, it is important to address symptoms immediately as more serious complications such as heart attack, stroke, infections, portal hypertension, bleeding complications may result.

How is MF diagnosed?

MF is diagnosed through blood tests, ultrasounds, MRIs, bone marrow biopsies or genetic testing. It is monitored through routine blood work and documenting symptoms to catch any changes in the disease over time. If you notice your symptoms changing, immediately report them to your doctor.

To feel prepared as you go into your appointments for monitoring MF, many patients find it helpful to write down their questions ahead of time and bring a friend or family member to take notes. By doing this, you can ensure that you get all the information you need to feel confident in your journey with the disease.

Important questions you may want to ask are:

  • How often will I come in for blood work?
  • What types of tests and procedures will be needed?
  • Should I see a specialist?
  • What symptoms or problems should I look for?
  • Should I call you if one of these problems comes up?
  • Are there certain foods I should be eating?
  • Can I exercise?
  • What information should I keep track of daily?
  • What are potential complications of my condition?

Myelofibrosis affects each person differently – your care team will create a care plan that is right for you. More information can be found in this fact sheet.

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