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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (281)Comment receiving replies
Replies to "@roughanne I am so sorry to hear about your terrible ordeal with the bone marrow biopsy...."
@janemc hi. I have ET triple negative. I also have some “scarring” or fibrosis. I think I am a 1 or maybe 1+. It is uncommon to have fibrosis with ET I am told, but a low level of fibrosis is not alarming. Also, keep in mind that a bone marrow sample is a localized sample, the character of your bone marrow elsewhere may be different. I appreciate that all this is worrisome because we don’t know how this will turn out, but try not to let it take over. That is no help either. Sorry your bone marrow biopsy was so painful. I am taking HU, 500 mg daily. It took awhile, but it brought my platelets down and I actually feel better. My symptoms are less now than before treatment. The symptoms took longer to improve than the platelet number. In the order of 6 months or so. Hang in there and remember there are other treatments if you cannot tolerate HU.
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@janemc thanks so much for your thoughtful reply for sure I hope to hear from someone with the same experience of the bone marrow results, I was told it wasn’t bad news or good news but medium news whatever that entails I’m losing faith in doctors communicating results in non medical speak but hopefully someone can give me a clearer explanation of my results just to put my mind at ease and to stop overthinking everything my thoughts and prayers are with everyone going through complicated medical issues 🙏