Researchers have made important improvements in the treatment of myelofibrosis over the past several years. This fact sheet explains this diagnosis and provides ways to manage symptoms to help patients and their loved ones cope with myelofibrosis.

Overview of Myelofibrosis

Myelofibrosis is a type of chronic leukemia that causes blood cells to grow uncontrollably, creating scar tissue in a person’s bone marrow. The scar tissue slows the production of blood cells, causing patients to develop anemia. The disease can lead to an enlarged spleen and liver.

The origins and risk factors for myelofibrosis are unknown. The condition is rare, affecting 3,000 to 4,000 people in the U.S. each year. Several academic institutions across the U.S. have established centers of excellence to help patients diagnosed with myelofibrosis.

To address serious itching associated with the disease, antihistamines or UV light can provide relief. Some patients have also benefited from antidepressants that have anti-itching effects, such as paroxetine (Paxil) or sertraline (Zoloft).

Myelofibrosis Symptoms

Myelofibrosis usually develops slowly. In its very early stages, many people don’t experience any symptoms. But as blood cell production increases, some symptoms may include:

• Feeling tired, weak or short of breath, usually because of anemia
• Pain or fullness below your ribs on the left side, due to an enlarged spleen
• Pale skin
• Easy bruising and/or bleeding
• Excessive sweating during sleep
• Fever
• Frequent infections
• Bone pain

Most of these symptoms can be managed with medications and other techniques. Talk with your doctor about any symptoms you are experiencing.

Treatments for Anemia

If myelofibrosis is causing severe anemia (low red blood cell counts), your health care team may consider treatments such as:

Blood transfusions. Periodic blood transfusions can increase red blood cell count and ease anemia symptoms such as fatigue and weakness. Sometimes, medications can help improve anemia.

Androgen therapy. Taking a synthetic version of the male hormone androgen may promote red blood cell production and may improve severe anemia in some people.

Thalidomide and related medications. Thalidomide (Thalomid) and the related drugs lenalidomide (Revlimid) and pomalidomide (Pomalyst) may help improve blood cell counts and may also relieve an enlarged spleen. These drugs may be combined with steroid medications. This type of treatment is being studied in clinical trials.

Treatments for an enlarged spleen. If an enlarged spleen is causing complications, your doctor may recommend treatment. Your options may include:

  • Surgical removalof the spleen (splenectomy). If the size of your spleen becomes so large that it causes you pain and begins to cause harmful complications—and if you don’t respond to other forms of therapy— you may benefit from having your spleen surgically removed.

  • Chemotherapy. Chemotherapy drugs may reduce the size of an enlarged spleen and relieve related symptoms, including pain.

  • Radiation therapy. Radiation uses high-powered beams, such as X-rays, to kill cancer cells. Radiation therapy can help reduce the size of the spleen when surgical removal isn’t an option.

Follow-Up Care

If you aren’t experiencing symptoms and don’t show signs of anemia, an enlarged spleen or other complications, treatment often isn’t necessary. Instead, your doctor is likely to monitor your health closely through regular check-up’s and exams, watching for any signs of disease progression. Some people remain symptom-free for years.

Your Support Team

When you are diagnosed with myelofibrosis, you’re faced with a series of choices that will have a major effect on your life, and you may not be sure where to turn. But help is available. Your health care team, family members, and friends will likely be an invaluable source of support at this time.

Oncology social workers also provide emotional support for people with cancer and their loved ones. These professionals can help you cope with the challenges of myelofibrosis and connect you with resources. CancerCare offers free counseling from oncology social workers who understand the challenges faced by people with myelofibrosis. They will work with you one-on-one to develop strategies for coping.

To learn more about how CancerCare helps, call us at 800-813-HOPE (4673) or visit www.cancercare.org.

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This fact sheet was made possible by Incyte Corporation.

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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