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What to Do If You’ve Been Diagnosed
with an MPN

 

Knowledge image

Myeloproliferative neoplasms (MPNs) are a closely related group of progressive blood cancers in which the bone marrow typi­cally overproduces one of the mature blood elements. Other shared features include tendencies toward blood clot­ting or bleeding, organ enlargement, bone marrow scarring (fibrosis), and a possibility of transformation. Although MPNs can strike anyone at any age, most people are affected in the sixth decade of life or later.

Stem cell transplants may offer a cure for some people with myelofibro­sis. But there are no known cures for most MPNs. However, people with MPNs can experience few or no symp­toms for extended periods of time, and many people who have MPNs can enjoy longevity with proper monitoring and treatment. The identification of the JAK2 gene marker in 2005 and the CALR gene marker in 2013 have led to significant advances in the diagnosis, understanding of disease processes, and treatment of MPNs.

Types of MPNs
There are three blood cancer types that are categorized as “classic” MPNs:
♦ Primary Myelofibrosis (MF) – Most commonly seen in men and women over the age of 60, MF is a chronic blood cancer in which the bone marrow func­tion is impacted by scarring. People with MF often have associated symptoms and an enlarged spleen. MF can occur in people with no prior history of an MPN (primary MF) or as a progression of polycythemia vera or essential thrombocythemia.
♦ Essential Thrombocythemia (ET) – ET is a blood malignancy that is typically characterized by an elevation of plate­lets in the blood. It is most prevalent in women over the age of 50, and common symptoms include blood clotting and bleeding. People with ET have a later risk of progression to MF.
♦ Polycythemia Vera (PV) – Character­ized by an elevation of red blood cells, PV is most commonly diagnosed in men over the age of 60. People with PV often exhibit elevated white blood cell and platelet counts, as well as an enlarged spleen.

MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve.

Tips for the Newly Diagnosed
An MPN diagnosis can be a confusing and emotional experience. Here are 7 prac­tical tips that may be useful for people newly diagnosed with an MPN, as well as others who are struggling to cope with an MPN.

1 Become informed about your disease.
MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve. Rather than feel­ing overwhelmed, take it day by day and be sure to ask your doctor for help.

2 Keep track of important informa­tion in a paper or electronic file.
It’s not unusual for people diagnosed with an MPN to be treated by multiple doctors. To stay on top of your treatment routine, it’s critical to record notes from doctor appointments, questions for and answers from your physician, dates of appointments, test results, blood cell counts, medications and dosing sched­ules, prescription refills, and other information.

3 Find a mentor.
Peer-to-peer match­ing programs can be valuable for identifying a seasoned mentor who can help you walk through the initial stages of an MPN diagnosis. As you become more knowledgeable about the chal­lenges people diagnosed with an MPN face, you may eventually consider becoming a mentor for others.

4 Get a second opinion if you need one.
Make sure you consult with a physician who has experience treat­ing MPNs. Don’t be afraid to seek a second opinion. There are resources available to help you find a doctor or treatment facility that understands the unique needs of MPN survivors.

5 Find a support group.
Many MPN survivors and their families find that it’s helpful to talk about their dis­ease with other survivors. Find an online or in-person support group to talk about MPNs with people who understand your concerns and emotions.

6 Find out about clinical trials.
On­going research is being conducted to find new treatments for MPNs. When new treatments are discovered, they must be tested to determine proper dosage, side effects, and effectiveness. By learn­ing about clinical trials, you can uncover opportunities that advance MPN treat­ments and possibly benefit your personal prognosis. Consult your physician to discover if clinical trials are an advisable course of action for you.

7 Research your options.
Information is an important part of changing your MPN prognosis. The more you know, the more empowered you become in your fight against the disease.

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If you’ve been diagnosed with an MPN, it’s im­portant to know that you’re not alone. The MPN Research Foundation provides comprehensive support for people with MPNs and their families. To learn more, visit MPNResearchFoundation.org.

Reprinted with permission from the MPN Research Foundation, mpnresearchfoundation.org

This article was published in Coping® with Cancer magazine, May/June 2016.