When Polycythemia Vera Becomes Myelofibrosis
Author: Voices of MPN
Being diagnosed with a rare disease like polycythemia vera (polly-sigh-THEE-me-ah-VAIR-Ah), or PV, can be scary. It can also raise many questions about what PV is and what you might expect while living with it. In short, PV is a rare, chronic blood cancer that is part of a group of diseases called myeloproliferative neoplasms, or MPNs. In PV, the bone marrow produces too many red blood cells. PV is a progressive condition, meaning that it may get worse over time.
When PV Transforms into MF
If you’re living with PV, you may wonder what will happen over time. While PV is different for everyone, the condition can usually be managed effectively for long periods of time. In a small percentage of patients, however—about 10%—PV can worsen, changing—or transforming—into myelofibrosis (my-ah-lo-fye-BRO-sis), or MF, which is another type of MPN. PV that changes into MF is referred to as post–polycythemia vera myelofibrosis (PPV-MF).
MF is also a rare, chronic blood cancer. People with MF have a defect in their bone marrow that results in an abnormal production of blood cells, causing scar tissue to form. It’s worth noting that MF does not turn back into PV, and patients whose initial diagnosis is MF don’t develop PV later.
Who Is at Risk for PPV-MF?
PV can transform into MF despite treatment. Over the years, a person with PV may find that instead of producing too many red blood cells, his or her red blood cell count has dipped below normal (a condition known as anemia). The spleen may also become enlarged or further enlarged.
The exact reason why PV turns into MF is not fully known. There are certain factors that may be associated with an increased risk for developing PPV-MF, including:
- Older age (60 years or older)
- High white blood cell count
- Scarring in the bone marrow
- Enlarged spleen
- High platelet count
There are certain things your Healthcare Professional can keep an eye on—such as your blood cell count and spleen size—to gauge whether your PV may be progressing. Regular monitoring of your blood counts along with routine medical care can help detect whether your PV is changing.
Take Control
It’s important to know that you, too, play an important role in managing your condition. Be sure to work closely with your Healthcare Professional to monitor your PV. Keep track of how you feel and discuss any changes you notice. Don’t be afraid to ask whether your PV is changing or transforming or where you can go for additional information and support.
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