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Essential Thrombocytosis General Questions
Blood Cancers & Disorders | Last Active: Apr 4 1:29pm | Replies (36)Comment receiving replies
@janemc I was first diagnosed with high platelets (~900) when I had the stroke in Apr 2023 and by September my platelets were down around 450. I have never actually made it into the "normal" range. The closest I have ever been is 404. I started out for the first 6 months have blood tests every week (which was very difficult since they can never find a vein!), and for the last year and a half I go for tests every 4 weeks (still can't find a vein! LOL) . So I feel I am being well monitored.
I didn't know we were the hardest to manage. How are you doing?
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@kapow
I'm really glad they're keeping a close eye on you . . . very sorry the blood draws are so difficult, though.
HU has helped me tremendously, but I have to take 6500 mg a week to keep my count 400/450ish. Thank goodness I tolerate it well.
As we were working towards an effective dose, my oncologist said the MPL variant is more challenging to get under control.
Our risk of blood clots is high too. Was your stroke caused by a clot? What a terrible way to find out you have ET.