Myelofibrosis: Prognosis and Life Expectancy (2024)

Life expectancy for myelofibrosis varies based on age, blood cell counts, and symptoms. Some experience rapid progression, while others may live longer without symptoms. Treatment can help extend your life span.

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.

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
  • stretching
  • 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:

  • nausea
  • dizziness
  • pain or tingling in the hands and feet
  • fatigue
  • shortness of breath
  • fever
  • 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 the above criteria, excluding age, are considered in the low risk category and have a median survival of over 15 years.

A 2022 study that examined the effect of treatment on MF also found that treating with Janus Kinase (JAK) inhibitors led to a median overall survival of 84 months, which is an improvement from about 64 months a decade ago.

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 also 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 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 of someone with myelofibrosis?

The life expectancy for a person with myelofibrosis depends on individual risk factors, including age, disease progression, and response to treatment. According to a 2022 study, treatment can add as much as 7 years to a person’s lifespan.

Is myelofibrosis a critical illness?

MF can progress quickly or slowly depending on genetic factors, age, and disease progression. Symptoms may include fever, fatigue, and changes in blood cell counts. As the disease advances, it causes bone marrow scarring and can lead to serious complications such as blood clots, anemia, and excessive bleeding. In about 20% of cases, MF can progress to AML.

What is the best treatment for myelofibrosis?

The only treatment that can cure MF is a stem cell transplant. However, this procedure comes with many risks, especially for older adults and people with additional health conditions. Otherwise, medications are available to manage the symptoms.

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.

Myelofibrosis: Prognosis and Life Expectancy (2024)

FAQs

Myelofibrosis: Prognosis and Life Expectancy? ›

The approximate life expectancy for those with MF is as follows: 15.4 years for low risk individuals. 6.5 years for intermediate-1 (INT-1) risk individuals. 2.9 years for INT-2 risk individuals.

What is the end stage of myelofibrosis? ›

The end result is usually a lack of red blood cells — which causes the anemia characteristic of myelofibrosis — and an overabundance of white blood cells and varying levels of platelets. In people with myelofibrosis, the normally spongy bone marrow becomes scarred.

How aggressive is myelofibrosis? ›

Myelofibrosis is aggressive cancer with a median survival rate of six years.

What are the signs myelofibrosis is getting worse? ›

You may be able to live with it for years without a problem. But some people's condition changes more quickly and causes symptoms that need to be treated. These include: Fatigue, weakness, shortness of breath, or pale skin because of a low number of red blood cells (anemia)

How long can a person live with myelofibrosis? ›

What is the life expectancy for someone with myelofibrosis? Myelofibrosis is aggressive cancer with a median survival rate of six years. A median is a midpoint, which means that some people live less than six years, and about the same number of people live longer than six years.

What is death from myelofibrosis like? ›

The most common causes of death in patients with MF include infection, hemorrhage, cardiac failure, mortality following splenectomy, and transformation of MF to acute myeloid leukemia (AML). Other reported causes of mortality include renal failure, hepatic failure, and thrombosis.

What causes death in primary myelofibrosis patients? ›

The common causes of death in patients with primary myelofibrosis are infections, hemorrhage, cardiac failure, postsplenectomy mortality, and transformation into acute leukemia. Leukemic transformation occurs in approximately 20% of patients with primary myelofibrosis within the first 10 years.

How painful is myelofibrosis? ›

Inflammation is high in myelofibrosis, and that can make people not feel very well and cause joint aches, muscle aches, just a feeling of not really a well-being feeling. Also, patients can experience bone pain because myelofibrosis is a disease of the bone marrow.

What is the most severe symptom of idiopathic myelofibrosis? ›

Complications of Myelofibrosis

These growths can cause gastrointestinal bleeding, coughing or spitting up blood, seizures, or spinal cord compression. Bleeding If your platelet counts drop, you may experience bleeding complications.

Does myelofibrosis run in families? ›

No one knows exactly what triggers the start of myelofibrosis or other myeloproliferative neoplasms. In the majority of cases, myelofibrosis is not inherited genetically — you cannot pass the disease on to your children or inherit it from your parents (although some families do demonstrate a clear predisposition).

What foods should you avoid with myelofibrosis? ›

Myelofibrosis can cause inflammation and other health problems in the body. It is necessary to avoid unnatural foods such as processed foods, red meat, fast food, high alcohol, high-sugar foods and beverages, excessive salt, and trans fats.

Can myelofibrosis go into remission? ›

In the case of progression to AML, the only chance of long-term survival is to get patients to remission so that they can undergo allogeneic hematopoietic cell transplantation. New therapeutic approaches are needed to achieve better outcomes in patients with advanced myelofibrosis when they progress on ruxolitinib.

What are the four hallmarks of myelofibrosis? ›

These findings were presented in an oral presentation at the 65th American Society of Hematology (ASH) Annual Meeting and Exposition in San Diego, California. Myelofibrosis is characterized by four hallmarks: an enlarged spleen, anemia, bone marrow fibrosis and disease-associated symptoms.

What is the longest someone has lived with myelofibrosis? ›

“There certainly have been individuals who have lived 20, 30, or more years with myelofibrosis and sadly, others who present with very advanced disease that may have a shorter life span; however, I think the theme overall is that survival is increasing with the further benefit of current therapies,” Dr. Mesa said.

What are the signs that myelofibrosis is progressing? ›

Myelofibrosis Progression
  • Bleeding in your stomach or esophagus, caused by increased blood pressure in your liver.
  • Easier bleeding with a hard time stopping it, as clotting becomes harder.
  • Pain in your belly area as your spleen gets bigger and tries to make up for your bone marrow not working right.

What is the life expectancy of someone with bone marrow failure? ›

Life expectancy for people with bone marrow failure can range from months to a full lifespan. Life expectancy varies by a person's: Specific bone marrow condition. Severity of disease.

How fast does myelofibrosis progress? ›

Takeaway. 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.

What happens when myelofibrosis progresses? ›

As the disease gets worse or progresses, you may have new symptoms. These could include: Bleeding in your stomach or esophagus, caused by increased blood pressure in your liver. Easier bleeding with a hard time stopping it, as clotting becomes harder.

What are the final stages of leukemia before death? ›

In the last days of their loved one's lives, caregivers may notice an increase in symptoms, such as:
  • slowed breathing, with increasing intervals between breaths.
  • dry mouth and lips.
  • rattling or gurgling breathing.
  • dark, bluish, or pale skin.
  • skin and body may be cool to touch.
  • loss of bladder and bowel control.

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