Living With Myelofibrosis: How to Manage the Day-to-Day

Creator: SurvivorNet Staff
Published: 2023-03-20T11:16:32-04:00

Details
Transcript
Save This Video

Managing Myelofibrosis

How myelofibrosis is managed depends on how aggressive the disease is.
Some patients present with no (or very few) symptoms and can simply be monitored initially.
Patients who are eligible may undergo a potentially curative bone marrow transplant but it is a very harsh treatment and is not possible for many patients.
For symptoms related to myelofibrosis, such as fatigue, pain, and easy bruising/bleeding, doctors have a few treatment approaches to improve quality of life.

How myelofibrosis affects your life will depend on the characteristics of your disease and how you are being treated. Myelofibrosis is a rare type of bone marrow cancer that can cause scarring in the bone marrow and anemia, in which the body does not have enough healthy blood cells. It is part of a group of diseases known as myeloproliferative neoplasms.

Some patients have no, or very few, symptoms from the disease and do not require immediate treatment, while others may require an aggressive approach.

“Very few patients are fortunate enough where there is not significant symptom burden from their disease, and they may not require therapy,” Dr. Abdulraheem Yacoub, a hematologist at University of Kansas Medical Center, tells SurvivorNet. “Some patients have low-risk disease and no symptoms and they can be managed without any medical therapy … but that is the minority of patients. The majority of patients with myelofibrosis have symptoms that interfere with their daily living, and their quality of life and they would benefit from interventions.”

Dr. Yacoub adds that there are many tools that can be used to treat these patients and improve their quality of life.

What are the treatment options for myelofibrosis?

A bone marrow transplant could be a potential cure for myelofibrosis . However, this is a very aggressive treatment and not all patients are eligible.

“Curative therapy with a bone marrow transplantation is an option that patients should consider, especially if they’re in good health, especially if their age is young, and especially if their disease is high-risk,” Dr. Yacoub says. “Now for the majority of patients who are not eligible for transplant … for those patients, we focus on the daily struggles for the disease rather than treating the disease itself.”

Patients tend to gradually advance when they have myelofibrosis. Even if they are diagnosed at low-risk, Dr. Yacoub notes that over time, their blood counts are likely to get worse, the spleen will enlarge, and symptoms will progress.

How can myelofibrosis symptoms be managed?

Patients who are not experiencing serious symptoms may simply be monitored initially. Those who are dealing with symptoms may be given non-curative treatments to manage them.

Common symptoms of myelofibrosis include:

Fatigue, shortness of breath (typically due to anemia)
Pain or fullness below the ribs (due to an enlarged spleen)
Easy bruising/bleeding
Night sweats
Fever
Bone pain

According to the Mayo Clinic, anemia-related symptoms may be treated with blood transfusions, androgen (hormone) therapy, or a drug regiment (including lenalidomine – brand name Revlimid).

Symptoms related to an enlarged spleen may be treated with targeted therapy, chemotherapy, surgery, or radiation.

Learn more about SurvivorNet's rigorous medical review process.