What is myelofibrosis?

Myelofibrosis (MF) is a type of bone marrow cancer. This condition affects how your body produces blood cells. MF is also a progressive disease that affects each person differently. Some people will have severe symptoms that progress quickly. Others may live for years without showing any symptoms.

Read on to find out more about MF, including the outlook for this disease.

Managing the pain that accompanies MF

One of the most common symptoms and complications of MF is pain. Causes vary, and can include:

  • gout, which can lead to bone and joint pain
  • anemia, which also results in fatigue
  • side effect of a treatment

If you’re in a lot of pain, talk with your doctor about medications or other ways to keep it under control. Light exercise, stretching, and getting enough rest can also help manage pain.

Side effects of treatment for MF

Treatment side effects depend on many different factors. Not everyone will have the same side effects. Reactions depend on such variables as your age, treatment, and medication dosage. Your side effects may also relate to other health conditions you have or have had in the past.

Some of the most common treatment side effects include:

Side effects usually go away after your treatment is completed. If you’re concerned about your side effects or you have trouble managing them, talk with your doctor about other options.

Prognosis for MF

Predicting the outlook for MF is difficult and depends on many factors.

Although a staging system is used to measure the severity of many other types of cancer, there’s no staging system for MF.

However, doctors and researchers have identified some factors that can help predict a person’s outlook. These factors are used in what’s called the international prognosis scoring system (IPSS) to help doctors predict average years of survival.

Meeting one of the factors below means the average survival rate is eight years. Meeting three or more can lower the expected survival rate to around two years. These factors include:

  • being over the age of 65
  • experiencing symptoms that affect your entire body, such as fever, fatigue, and weight loss
  • having anemia, or a low red blood cell count
  • having an abnormally high white blood cell count
  • having circulating blood blasts (immature white blood cells) greater than 1 percent

Your doctor may also consider genetic abnormalities of the blood cells to help determine your outlook.

People who don’t meet any of the above criteria, excluding age, are considered in the low-risk category and have a median survival of over 10 years.

Coping strategies

MF is a chronic, life-altering disease. Coping with the diagnosis and treatment can be difficult, but your doctor and healthcare team can help. It’s important to communicate with them openly. This can help you feel comfortable with the care you’re receiving. If you have questions or concerns, write them down as you think of them so you can discuss them with your doctors and nurses.

Being diagnosed with a progressive disease like MF can create additional stress on your mind and body. Make sure to take care of yourself. Eating right and getting mild exercise like walking, swimming, or yoga will help give you energy. It can also help take your mind off the stress involved in having MF.

Remember that it’s OK to seek support during your journey. Talking with your family and friends can help you feel less isolated and more supported. It will also help your friends and family learn how to support you. If you need their help with daily tasks like housework, cooking, or transportation — or to even just listen to you — it’s all right to ask.

Sometimes you may not want to share everything with your friends or family, and that’s fine too. Many local and online support groups can help connect you with other people living with MF or similar conditions. These people can relate to what you’re going through and offer advice and encouragement.

If you begin to feel overwhelmed by your diagnosis, consider talking with a trained mental health professional like a counselor or psychologist. They can help you understand and cope with your MF diagnosis on a deeper level.