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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Thank you so much for sharing your experience. It is so important that we share with one another, as this seems to be a rather rare disease, and connecting like this makes one feel less alone in the process. I am holding off on taking HU for now. My most recent numbers are in the 570-650 range, however, being under 60 hopefully reduces my risks. I take aspirin each day and would like to know more information on how this may put me ( us) at risk in case we have an accident etc. The bleeding seems to be the issue with blood thinners, but we need them to manage ET. Thank you again for your response. Helpful.
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@eansgardengirl
You raise an excellent point, about an injury. I’ve been concerned with this as well. I used to play pickleball, but because I’m … less than graceful 😏, I’ve had numerous falls with substantial bruising. So I stopped playing. Your cycling must give you similar concerns. So it’s the bleeding concern due to the aspirin, but also-and even more concerning-is having a clot form because of a bruise where perhaps the aspirin wasn’t quite adequate enough in preventing a clot. A conundrum, for sure…best of luck to you.