About that high LDH and enlarged platelets (and more) ...

Global Handwashing Day. It's a thing! It was October 15.
But EVERY day can be handwashing day. And should be
if you have ET. 

Sunday I met with five other folks in my area to ask questions about ET blood tests and research.  Dr. Robyn Scherber, MPN expert from the Mayo Clinic, spoke to us by phone for about half an hour. MPN Advocacy &Education International (link at right; please check it out!) sponsored the meeting and the call with Dr. Scherber.

I've been puzzled by two things that show up in my bloodwork, and if you have ET, you've probably noticed it too. I asked Dr. Scherber about high LDH (lactate dehydrogenase) levels and the exciting news that "enlarged platelets detected" now appears on my CBC. Randomly googling these things will scare the hell out of you because you may think you're in liver failure or that your platelets have stopped working.

This is not the case.

LDH indicates how quickly your body is turning over blood cells. Pretty fast in our case, because we have too many platelets. So think of this test as a marker that helps doctors make your diagnosis.

Same thing with enlarged platelets. They're another marker that indicate you have ET. Think of enlarged platelets (megakaryocytes, if you want to impress your friends) as big, dumb platelets that don't work right. There may be quite a few of them hanging around in your bloodstream, but they and your elevated LDH are somewhat normal for those of us with ET and not something to freak out about.

Do keep an eye on those numbers, however, and let your doctor know if you see changes in that worry you.

One of the other MPN "orphans" at our meeting who has had polycythemia vera for decades, also attested to what most of us know: Our blood counts jump around, and stress and routine illnesses can affect them. He suggested that getting your blood tests at the same time of day at the same lab every time can give you more accurate counts. Good tip.

In other news:

• The FDA seems poised to approve Jakafi for ET patients sometime next year. (Right now, Jakafi is approved only for MF and PV patients, though some hematologists are prescribing it off-label for ET.) Remember that Jakafi is very expensive (upwards of $10K per month). If you are having trouble paying for your meds, please check out the Patient Alliance Network. Their link is also at right.

• MPN researchers are doing more work on the factors that might be associated with "disease progression," or what some of us call morphing from ET to PV or MF. The American Society of Hematology (ASH) meets in January every year, and more info from that conference may shed light on this issue. Stay tuned for more info.

• Dr. Scherber also confirmed what a lot of us have suspected: A compromised immune system is part of the territory with MPNs. So, yup, we are more prone to getting sick or getting sicker than other folks. I have used this info to browbeat the rest of my family members to get their flu shots (I already got mine). You may want to pass the word on to yours.

• Good time to remind everyone to wash hands frequently. I teach college students and work in the tutoring center one-on-one with students. I try to wash my hands every time I pass the ladies loo. I also don't touch door handles with my bare hands. This is a pretty easy maneuver. I often wear a long scarf, and it's easy to slip it between my hand and the door handle like a hot pad. I've also used paper towels or Kleenex for the same purpose. 

• MPN Advocacy & Education is thinking of an event in Novi, Michigan, sometime in 2017. Not sure this will be a conference or some other type of meeting, but will post when I have details. 

Meantime, here in the Great Lakes, the weather has been crisp and clear. I'm getting over my lung/bronchial bug (and I got a LOT done thanks to two weeks on Prednisone!). I hope it's nice wherever you live, and that you're enjoying some time outdoors. 

Be well!

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