Those of us living with rare bone marrow-based blood cancers (myeloproliferative neoplasms) can find helpful information and support through the MPD Foundation (www.mpdfoundation.org).
Based in Chicago, the MPD Foundation sponsors patient-physician symposia across the United States, stimulates research for new treatments (and eventually cures), and fosters collaboration in many ways. I'm a big fan of the organization -- not only its mission, but the people who make it happen. By website and by phone, the MPD Foundation was helpful and reassuring when I was first diagnosed with polycythemia vera.
On October 25th, the MPD Foundation hosted a patient educational symposium at the University of California San Diego Moores Cancer Center in La Jolla, California. They brought in experts from leading institutions to share the latest in the range of research, clinical trials, the patient experience.
One of the experts is a patient who went through a bone marrow transplant and now lives with chronic Graft vs. Host Disease. You can read more and view the symposium video on the MPD website.
This month, the MPD Foundation represented us patients at the American Society of Hematology meeting. Because the MPDs (I guess we need to get accustomed to calling them MPNs) are rare compared to all the other blood cancers, their presence reminds practitioners that PV, ET, and MF patients are in their communities. They also make practitioners aware of local MPD support groups across the country.
In other news...
I've seen a few queries on various MPD listservs and posts (and I asked this myself when I was diagnosed with Polycythemia Vera one year ago):
Is PV/ET/MF considered cancer?
The question may not seem important, but it is for several reasons:
1. health insurance and disability insurance coverages are impacted based on illness codes.
2. naming "it" helps you come to terms with what's going on in your body.
3. it simplifies the explanation to the casual inquirer.
And now it's official! You've got a Cancer.
The World Health Organization (WHO -- not to be confused with "The Who") officially reclassified the myeloproliferative "disorders" as "neoplasms" (meaning "malignancies" or the dreaded "cancer").
This reclassification will help patients who need the chemotherapies to survive get the coverage they need from their health insurance. Believe it or not, all insurers are not up to speed on indicators for polycythemia vera, essential thrombocythemia, and primary myelofibrosis; current standard treatments; and promising off-label treatments.
Fighting a disease and fighting a bureaucracy at the same time is doubly exhausting!
The good news is that we can be living testimony that "Cancer" does not set an immediate expiration date. While there is yet no cure, we can live with these pesky diseases for quite some time as long as we take special care of and listen to our bodies.
There is still some conflicting information on the web:
www.cancer.org (American Cancer Society) still refers to MPNs as "chronic disorders and diseases"
www.lls.org (Leukemia & Lymphoma Society) refers to them as "clonal diseases" but the fact sheets are in the leukemia category.
Funny / True Story:
Someone actually called me a few days after we had a conversation about my friend "Polly" and said, "Hey! I've got great news for you! I looked up polycythemia on the ACS website and it's a disorder, not a cancer!"
It was then I was reminded that words hold emotions for us all. While the word didn't change a single thing about my condition, this person felt a lot better. What should I say? I'm so happy for you? We hadn't spent a lot of time on the "C" word, so I was a bit surprised. I explained that I wasn't angling for the cancer label. The shift from "disorder" to "neoplasm" was fairly recent and because the MPDs don't afflict a large number of people, the news might not have reached the ACS webmaster yet.
It was then I was reminded that words hold emotions for us all. While the word didn't change a single thing about my condition, this person felt a lot better. What should I say? I'm so happy for you? We hadn't spent a lot of time on the "C" word, so I was a bit surprised. I explained that I wasn't angling for the cancer label. The shift from "disorder" to "neoplasm" was fairly recent and because the MPDs don't afflict a large number of people, the news might not have reached the ACS webmaster yet.
Sometimes it just is what it is...
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