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← Return to New to Hydrea for ET
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Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (146)
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Hi circawdm,
I would agree with what you said if one has ET. My O/H told me 1/10/25 I had ET, but changed my diagnosis to Myelofibrosis 2/10/25. With me taking nothing, my platelets dropped 400 and my hemoglobin went to anemia on one lab test. Strangely enough, next three labs have shown no anemia but high platelets. I really do not know what I have except CALR1 mutation.
Replies to "Hi circawdm, I would agree with what you said if one has ET. My O/H told..."
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Hi again,
If your doctor doesn't know several other things by now, especially after a BMB and perhaps consulting with a real MPN specialist, you maybe should seriously think about getting a second opinion and perhaps changing doctors. I don't know how close or far you are from one of the several cancer centers in the US - Sloan Kettering, MD Anderson, Mayo Clinic, Johns Hopkins, etc., but if you can it might very well be worth it to look at them online and call and see when you could get an appointment.
From reading hundreds of online posts in various groups, people who went to a place with more doctors specializing in MPNs found answers.
That's what I think as a conclusion to what you have told us about your path with this disease, what you are getting and not getting, and what is still left unanswered.