Your life expectancy with myelofibrosis can depend on factors such as age, blood cell counts, and other symptoms.
Myelofibrosis (MF) is a type of bone marrow cancer. This condition affects how your body produces blood cells. MF is a progressive disease that affects each person differently. Some people may have severe symptoms that progress quickly. Others may live for years without experiencing any symptoms.
Read on to learn more about MF, including the factors that may affect the outlook for this disease.
Some people may go years without experiencing symptoms of MF, while others may experience symptoms earlier.
One of the most common symptoms of MF is pain. Causes vary and can include:
- gout, which can lead to bone and joint pain
- anemia, which also results in fatigue
- a side effect of treatment
If you’re in a lot of pain, talk with a doctor about medications or other ways to manage it.
You may be able to reduce pain at home with:
- light exercise
- getting enough rest
Treatment side effects depend on many different factors. Not everyone will have the same side effects. Reactions depend on variables such as your age, treatment, and medication dosage. Your side effects may also relate to other health conditions you have or have had.
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 usually go away after your treatment is completed. If you’re concerned about your side effects or have trouble managing them, talk with your doctor or another member of your care team about other options.
If a hematologist-oncologist, a doctor specializing in diagnosing and treating blood cancers, determines that you are low risk and if you do not have symptoms, you may not require treatment until symptoms develop.
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 with MF. These factors are used in the international prognosis scoring system (IPSS) to help doctors predict average years of survival.
“Myelofibrosis management has come a long way in the last 10 years. The list of effective myelofibrosis drugs is growing. These medications help patients live longer with fewer symptoms and better quality of life.”
— Ivy Altomare, MD
It’s important to note that these survival estimates are based on survival averages and currently available treatments. As newer treatments are developed, survival rates may also change.
Meeting one of the factors below means the average survival rate is about six years. Meeting three or more can lower the expected survival rate to around one and almost three years. These factors include:
- being over age 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
- needing a transfusion
- having a specific chromosomal abnormality
A 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 15 years.
MF is a chronic, life-altering disease. Coping with the diagnosis and treatment can be difficult, but your doctor and healthcare team can help. Communicating with them openly can help you feel comfortable with the care you’re receiving and recommend additional support, such as therapy or support groups. If you have questions or concerns, consider writing 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 others 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.
The following includes common questions about myelofibrosis.
What is the end stage of myelofibrosis?
Myelofibrosis, unlike other types of cancer, does not use a staging system. Instead, it uses risk categories to estimate average survival rates.
About 10-20% of MF cases develop into acute myeloid leukemia (AML), which is challenging to treat and associated with a poor outcome.
What is the life expectancy of a person with fibrosis of the bone marrow?
The life expectancy for a person with myelofibrosis may range from 1 year to 15 years or more. This can depend on individual risk factors, including age, disease progression, and response to treatment.
How aggressive is myelofibrosis?
Myelofibrosis can vary widely in how quickly it progresses. Certain genetic risk factors, a person’s age, and how much the disease has progressed can all inform an individual’s outcome. Some people can live with myelofibrosis for 15 years or more.
What are the signs that myelofibrosis is progressing?
As myelofibrosis progresses, you may develop symptoms that affect your entire body, including fever and fatigue. Doctors may also conduct tests to monitor your red and white blood cell counts and how many immature white blood cells are circulating in your blood and bone marrow. A low red blood cell count (anemia) or a very high white blood cell count may indicate progression.
A person’s outlook with myelofibrosis can vary from around 1 year to more than 15 years, depending on individual risk factors and disease progression. Some people may go years without developing symptoms, while others may have a more rapid progression.
Treatment may help reduce symptoms, slow disease progression, and improve your quality of life.