Saturday, December 25, 2010

Thrombosis Risk Rises in Women With Myeloproliferative Disorders - OncologySTAT

I found this on-line resource, OncologySTAT, that provides news articles (most likely press releases) and other current information on a broad range of cancers, current research, upcoming trials, and conferences of oncologists and researchers.
The site requires registration (free) with an email address to view the full articles.

TIP #1  for patients:    create a free email account that you use just for your health research (like you hopefully do for your on-line contests) to prevent too much junk filling up your personal email account.

TIP #2 for patients:    just because something is in print, doesn't make it true (or true for you).    Especially with these diseases, science is working hard to catch up.

Thrombosis Risk Rises in Women With Myeloproliferative Disorders - OncologySTAT

When you register with the website, you can select the type(s) of cancers you'd like more information about (including MPDs and rare cancers!).

Let me know if this is helpful for you.

Thursday, December 16, 2010

Migraines -- a real pain

I learned a new word: Migraineur. Not to be confused with one who creates new business ventures (entrepreneur), a migraineur is one who regularly suffers from migraine headaches.

I am such a person. They started when I was a teen, and seemed linked to my monthly hormonal cycle. A migraine headache is not easily confused with a run-of-the-mill sinus headache... and no offense to the cute gal who pushes Excedrin Migraine on TV... but that pill does NOT knock out a migraine!  It's just got a bit more caffeine in it.

While a dull headache doesn't phase me, the pulsing, piercing pains that make a guillotine look like a refreshing alternative to a pillow.  

A real migraine makes me feel nauseous, sensitive to sound and light, dizzy, and the pain is so intense that I can't think straight.  And it is all confined in this small space on top of my neck!  I want to scream but the noise of my screaming would be annoying.  When it happens in a public place (like at work), it's horrible.
And if others are around when a migraine strikes, I'm likely to use my less cultivated vocabulary to describe how I'm feeling and what they can do to help me.

When I was pregnant and for several years thereafter, the migraines ceased.  I enjoyed 15 years with less than one migraine per year.   But now, they are baaaack.   Possibly linked to the polycythemia vera.

An MRI of my brain shows several white spots that are consistent with migraine damage (no surprise to my brothers that I have brain damage) from days gone by.

We've spent this year trying various medications to keep them at bay.  So far, the prednisone (steroid) I take for the Behcet's Disease works the best.  But I can't stay on the steroid long term, as it is not good for bones (and I already have degenerative disk disease in my spine).

So now I've started Topiramate, a medicine for epilepsy which is also used for migraines.  One of the side effects is loss of appetite.  I'm hoping this counteracts the side effects of the steroid (munchie activator and fluid retention).  We'll see.

The National Migraine Association's website has links to many sites and sources of great information for migraine sufferers.  Check out the website:

Friday, December 10, 2010

MPD Foundation's latest Symposium & Other Good News

Those of us living with rare bone marrow-based blood cancers (myeloproliferative neoplasms) can find helpful information and support through the MPD Foundation (

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: (American Cancer Society) still refers to MPNs as "chronic disorders and diseases" (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.
Sometimes it just is what it is...