You think you're fatigued now? Here comes Christmas!

First day of Advent, and, as Archie Bunker used to say, "The Christmas season is at our throats again." And that means increased fatigue. While doing research for my previous post, I learned that "cancer fatigue" is a real phenomenon that persists despite rest and sleep (though you certainly need both!). Patients with ET have that kind of fatigue. And that makes creating the "magic of Christmas" for your family a whole lot harder.

Fatigued? You're not alone

We live in tiring times. Google "Why am I so damn tired all the time?" and you'll get over 3 million hits. However, the results of a study in the journal Cancer in 2006 indicated that the fatigue factor for ET patients, even those considered "asymptomatic," is significantly higher than in the rest of the population.

Although the study is nine years old, drug therapy and treatment protocols for ET haven't changed much, so I think the results offer some interesting insights about how patients measure their fatigue and general quality of life. Certainly the study underscores the need for palliative care that improves quality of life as much as research in pharmaceutical cures.

So here's more about that study.

My self-improvement kick: Update #1

When I found out a year ago that my wonky mitral valve had progressed to moderate/severe regurgitation and the need for surgical repair was "probable," I started on a campaign to get myself in better shape before surgery might be needed. Then I got hit with the ET diagnosis a few months later.

Turns out, most of the things on my self-improvement list (below) are those the Mayo Clinic recommends for ET patients, too.

1. Lose weight (my BMI was 30.9)
2. Eat better (my glucose had spiked up)
3. Get more exercise to combat fatigue and back pain
4. Maintain healthy blood pressure
5. Reduce stress

Jakafi, oral chemo, and drug costs

Jakafi (ruxolitinib) is a relatively new drug on the market prescribed for some MPN patients who don't respond to other types of oral chemo. A recent study indicates it could be a good treatment for ET. (Right now, the FDA has approved Jakafi for myelofibrosis and polycythemia vera, two of ET's sister MPNs.).

Good as this news is, it raises concerns about the high cost drugs for rare diseases.

Welcome, fellow orphans!

Essential thrombocytosis/thrombocythemia is an "orphan disease," that is, a disease that is a) largely ignored by medical research because b) very few people have it, which means c) there's no money to be made treating it.

A National Institutes of Health article from the British Journal of Pharmacology explains the landscape for orphan diseases and treatments and why ET's designation as an orphan disease matters.

Need questions for your doc?

Don't know about you, but a trip to the hematologist at the regional cancer center usually gouges a good half day out of my schedule, what with driving in from the sticks and waiting around for the doctor to get done with the really sick people.

Writing down my questions ahead of time can get me the heck out of there faster. And, using my hyper-organized control freak super powers, I made a question tree to take with me to every visit. That way, my notes are all organized, and I'll be able to decipher them before my next visit.

You can make your own from the image provided here (click the image and it will enlarge). Or message me at facebook.com/ethrombo, and I'll be happy to send you a Word or PDF file.

Be well!

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Do you know what your platelet count means?

A platelet (aka thrombocyte) count measures how many platelets you have in a microliter (mcL) of your blood (which also contains red and white cells of various types). My last platelet count was 635. A normal platelet count is between 150 and 400 (sometimes the upper limit is set at 450 by different health centers and organizations). But here's the important thing: A platelet count of 635 means that you have 635,000 platelets per mcL.

Why is this important to know? Because if you don't understand what the number means and you learn that your platelets have jumped from 750 to OVER A MILLION you will be terrified and think you are dying. This happened to my dad because:

a) His lab tests were poorly explained to him, and/or
b) He was busy telling the nurse a story and wasn't listening.

... and I've got my brand spankin' new diagnosis

So the bone marrow and other tests done in October weren't a wash after all. (Just because you have access to your own online chart doesn't mean you can understand it.) Hematologist said today that the morphology was consistent with blah blah blah and etc. etc. Bottom line: essential thrombocytosis (aka thrombocythemia) is confirmed. I also learned some new things.