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Betty (@bettygsa)

JAK2 V617F positive, now what?

Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (9)

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@rjgregory440

It seems like a very long time since your TIA and your current diagnosis. Are you on any medication at all to keep the stroke risk down until your December appointment? At the very least low dose aspirin? Most on this site with your diagnosis ( myself included )are taking aspirin and oral Hydrea. A few folks seem to not be tolerant to the hydrea and are taking a new and much more costly medication. Hydrea has been around since the 1960's and is a very effective treatment. The most helpful things I can tell you are to take your med at the same time evey day, with food; Hydrate! Water is essential; And avoid prolonged exposure to the sun (hats and long sleeves/pants). I know of people who have lived many years with this specific condition. If we take our meds and monitor our health appropiately, the odds are great that it will be something else entirely that ends our lives.

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Replies to "It seems like a very long time since your TIA and your current diagnosis. Are you..."

Thank you. No medication has been requested or discussed yet. I've only seen my primary so far. I lost a lot of weight last year which prompted the bloodwork. I'm anxious to see Hematology to find out more. I appreciate all the advice.