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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Aug 20 4:11pm | Replies (311)

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Hi,
Is this discussion still active?

I just found the website yesterday and have been reading threads, but most seem to be old ones. Are there current active ones too?

I was diagnosed with ET in April, JAK2 positive, everything else normal, no symptoms. Other causes ruled out with tests but no bone marrow biopsy done. Platelet count has been steadily rising for a couple of years, now 581. Specialist put me on low-dose aspirin daily and said if count goes over 600k, which it likely soon will, he'll put me on Hydrea. I don't like the idea of that but I don't want to have a stroke or heart attack from a blood clot. He said that's the biggest danger with ET and that I'm high risk for clots. He said most tolerate Hydrea well. He said I'll need to get blood drawn every 3 months but he will alternate with my regular doctor, who always does lab work anyway.

I've always been healthy and this new medical issue is a bit unsettling, but I'm trusting the Lord to get me through it. I know I'm very blessed to not have this issue at a younger age. I have to go back to him in Sept.

I've already found this forum to be helpful and reassuring, but I would like to join an active discussion. Best wishes and thanks to all.

J. (cec2)

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Replies to "Hi, Is this discussion still active? I just found the website yesterday and have been reading..."

We're sorry about your diagnosis, but happy you've found us!

Really glad to hear you were diagnosed before having a stroke or heart attack
I, too, am Jak 2 positive but wasn’t diagnosed until I had a stroke and two dvds while recovering. Initially had two phlebotomies but once I was on Hydroxyurea no longer needed. Been on since 2018 and no side effects (no itching). Know everyone us different
Did have bone marrow biopsy once diagnosed, which showed no damage to bone marrow Wishing you the very best. Keeping informed is great