Myelofibrosis (MF) is a progressive disease that affects each person differently. Some people will have very severe symptoms that progress quickly. Others may live for years without showing any symptoms.
While your doctor can talk to you about your symptoms and concerns, here are some common complications of MF that you may encounter.
One of the most common symptoms and complications of MF is pain. This can include:
- bone and joint pain caused by gout
- pain and fatigue caused by anemia
- pain caused by a 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 all help manage pain.
Treatment side effects
Treatment side effects depend on many different factors, and not everyone will have the same side effects. Reactions depend on factors such as your age, your treatment, and your 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:
- pain or tingling in the hands and feet
- shortness of breath
- temporary hair loss
Side effects are usually temporary and will 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 your options.
Predicting the prognosis, or outcome, of MF is very difficult and depends on many factors.
For many other types of cancer, a staging system is used to measure the severity of the disease. However, there’s no staging system for MF. Still, doctors and researchers have identified some factors that can help predict prognosis, such as:
- 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
- circulating blood blasts greater than 1 percent
Your doctor may also consider genetic abnormalities of the blood cells to help determine the prognosis of MF.
These factors are used in the IPSS, or international prognosis scoring system, to help doctors predict the average years of survival. 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 ten years. Meeting one of the criteria above reduces the survival to eight years, and meeting three or more can lower the expected survival to around two years.
Long-term outlook and 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 and honestly. This can help you feel as comfortable as possible with the care you’re receiving. If you have questions or concerns, write them down as you think of them and talk with your doctors and nurses.
Being diagnosed with a progressive disease like MF can put a lot of additional stress on your mind and body, along with the physical stress of being sick. Make sure to take care of yourself. Eating right and getting mild exercise like walking, swimming, or yoga will help give you as much energy as possible. It can also help take your mind off of the stresses of 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 even just someone to 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 the same 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.