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Collectively known as myeloproliferative neoplasms, or MPNs, these rare blood cancers are, well, very rare.
About 20,000 Americans are diagnosed with an MPN each year.
María Medem
Thankfully, you dont have to face your diagnosis alone.
Expert care teams and advocacy groups can help provide treatment and support.
Here are some helpful things to remember as you start your research and talk to doctors about your options.
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You may not experience any symptoms.
MPNs are resulting from mutations in the stem cells found in your marrow, a.k.a.
the soft, spongy tissue in the center of each bone.
If you recall from science class, stem cells hang out there and develop into blood cells and platelets.
(This is one of the many reasons you should always get anannual physical exam.)
If someone with a rare blood cancerdoeshave symptoms, theyre often random and nonspecific.
Your cancer may not be treated immediately.
Most of the time, if you are diagnosed with cancer, doctors begin treatment right away.
But thats not usually the case with MPNs.
Not needing to undergo treatment may seem shocking since this iscancer, after all.
But rare blood cancers occur on a spectrum.
If the medication works, many people can eventually return to being monitored without treatment, Dr. Lamanna says.
Despite the name, a transplant doesnt involve going under the knife.
In a few months, the person has a completely new blood system, she adds.
Clinical trials may be an option.
But there is still work to be done.
We dont have great answers for all these diseases, Dr. Rampal says.
The only way we make progress is by doing clinical trials.
For example, phase I trials look at a brand new drug that has not yet been FDA-approved.
These trials are great for somebody less heavily treated or perhaps relapsed after one treatment.
The new drug may not work or have some side effects.
The decision [to join a clinical trial] needs to be made very carefully, Dr. Rampal says.
Advocacy groups can be super helpful.
Although these diseases are rare, youre not alone.
Plus, theyll understand exactly what youre going through, which can be emotionally beneficial.
Dr. Lamanna says advocacy groups can also help you find a specialist or get a free consultation.
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