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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Jul 18 8:22am | Replies (622)Comment receiving replies
@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
Replies to "@jodyjazz Did your oncologist reduce the HU dosage or was that your decision? I'm about to..."
@mw2023
First, I just quit, and didn't ask anybody, for one week, then I got scared of a stroke, so negotiated the evo day schedule.
New blood work suggest a rise in platelets to 441, which they did not see as alarming. I go back in May to check again.
It is your life and your body, but! For me the risk of having a stroke and NOT dying is horrifying. So I will put up with hair loss if need be I guess.
@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.
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@mw2023
With ET, every single day, we're churning out too many platelets.
That makes us exhausted, gives us headaches, wears out our bone marrow, and puts us at risk for blood clots.
Every single day.
Please don't make changes to your HU dose without consulting your oncologist.