New Myelofibrosis Diagnosis - What to Expect

This video explains myelofibrosis in three basic steps: diagnosis, risk assessment, and treatment.

Read the full video transcript below:

In this video, we'll talk about three key steps that patients and families with a new diagnosis of myelofibrosis should understand: diagnosis, risk assessment, and treatment.

First let’s answer the question: what is myelofibrosis?  Myelofibrosis or MF, is a rare type of blood cancer that affects bone marrow, the spongy tissue inside bones where the body makes blood cells. In myelofibrosis, the bone marrow gets replaced by scar tissue, which interferes with the production of blood cells.

Symptoms of MF can vary, but common ones include fatigue, weakness, and a feeling of fullness or discomfort on the left side of your belly caused by an enlarged spleen. Some people may also have night sweats, fever, or unexplained weight loss. In the earliest stages, some people may not even have any symptoms, which makes it harder to diagnose right away.

During diagnosis, doctors start with a blood test to check for abnormal blood cell counts. If the results suggest a problem, a bone marrow biopsy may be ordered. In this procedure, a small sample of bone marrow is taken from the hip bone to look for scar tissue and other signs of the disease. Imaging tests, like an ultrasound or CT scan, may also be used to check for an enlarged spleen or other abnormalities.

Unlike many cancers, there is no staging system for myelofibrosis.  Instead, doctors use a scoring system to assess how aggressive the disease will behave.  One of the most common scoring systems is called MIPSS70, and includes factors like certain genetic mutations, blood counts, symptoms and bone marrow appearance under the microscope.  

Some patients who are low risk on MIPSS70 may be able to avoid treatment.  While patients who are high risk require more intense treatment.

JAK inhibitors are medications that interfere with the chemical signaling pathways that fuel the progression of myelofibrosis. These medications are commonly used to treat MF and can improve quality of life and survival.  

Sometimes other medications like hydroxyurea, interferon alpha or other anemia medications are used to help with symptoms.

Finally, a bone marrow, or allogeneic stem cell transplantation is the only potential cure for patients with MF.  It is typically only offered to younger, healthy patients with intermediate or high risk disease. 

This video is for educational purposes only. This is not medical advice. Talk to your doctor before making any medical decisions.