Why does it matter?
Myeloproliferative Neoplasms (MPNs), are not typically well understood by hematologists (or oncologists) at the local level.
Once diagnosed, one of the top questions many patients ask is “Is this cancer?” You may be told that you have a rare “blood disorder” or a rare disease with no mention of the Big C. This is typically caused by one or two things – Either the doctor does not want to scare the patient or he may be unaware that MPNs are a leukemia/blood cancer.
“From the time of discovery through the balance of life, any individual diagnosed with cancer is a survivor”
How you were “born into the MPN World” and your level of symptoms may determine your view, but it is always beneficial to become knowledgeable about your MPN (PV, ET or MF). If you were diagnosed during a routine exam via a blood test and have few symptoms, the thought of cancer may be worlds away. On the other hand, doctors may not discover MPN until after a serious complication has occurred. If your journey began with a frightening trip to the Emergency Room or a serious complication, the cancer classification becomes real. Either way, there is a real need for more education.
Potentially serious complications of PV/ET/MF include:
In order to receive Proper Treatment you should see an MPN Specialist.
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Ischemic stroke, a stroke caused by loss of blood supply to the brain (stroke)
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Pulmonary embolism, a blood clot in the the lung
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Heart attack
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Deep vein thrombosis (DVT)
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Possible progression to Acute Myeloid Leukemia (AML)
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End stage Myelofibrosis
Get Help
Our goal is for improved patient care by recognizing that MPNs are a cancer (A blood cancer) and focusing on greater MPN Awareness. If you are diagnosed with MPN, go get help! We are here for you.
With diagnosis of MPN (Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis) as a cancer patient, there are many programs and benefits available to ease your burden. Many of these programs are offered for free or at greatly reduced rates at Cancer Centers around the country. Examples include: Support counseling (group or one on one therapy), financial support, insurance assistance, fitness programs, gym memberships (YMCA/YWCA), yoga/tai chi, mind, body techniques to enhance healing, nutrition counseling, and music therapy.
