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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@ttown

I have been on hydroxyurea for 10 months now after getting a diagnosis of ET Jak2.....My mouth got sores on my tongue, down my throat, and on my lips initially. I was taking HU daily, and my oncologist/urologist, took me off for 5 days, then started me back at 3X a week for a 3 month period....then added a fourth pill that I take Saturday, Sunday, Tuesday, Thursday and after 3 months he increased my dosage to 5 one week and 4 the next. What I am saying is, that the gradual increase has worked to put my platelet count back in the normal range, and no more sores. We are going to hold at this level as long as my platelet count stays in the normal range.
Wanted to share my experience because it worked so well for me. Oh...and I had headaches initially as well, but not now with the gradual increase. Hoping this helps.
Wishing good things for everyone.
Ginger

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Replies to "I have been on hydroxyurea for 10 months now after getting a diagnosis of ET Jak2.....My..."

Sorry all - not important, but I caught it today that I wrote oncologist/urologist and of course it should have been oncologist/hematologist. Also, I would have edited the original post, but could not find that option.