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What are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (60)Comment receiving replies
Hi Kathy. Welcome to Connect! Thank you for sharing your husband’s experience about his 25 year with ET and MF.
Kudos to both of you taking matters into your hands to find a better doctor; one who puts the patient’s needs first and doesn’t let ego take center stage.
It’s very encouraging to see that your husband continues to do well with the Anegrelide keeping his platelet level under control.
I’m curious about how long ago the BMT was suggested. I realize no match was found but if that was 20 years ago, so much has changed since then. From my latest information there are over 41 million members and 803,000 cord blood units on the international donor registry. That has grown by 20 million since I had my BMT almost 6 years ago. So the prospects of finding a donor for your husband is much more vast than it was 20+ years ago.
Has there been any changes in his MF diagnosis?
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@loribmt asked about changes in my husband's ET & MF of 25 years ago.
There have been no changes in the diagnosis. He had low hemoglobin 2 years ago, so he had to have EPO injections twice. BUT....
BUT, his Hemo Doc and his Urologist a the same hosptial clearly were not reading med notes. He had prostate cancer a year before and proton therapy radiation. His Urologist had said the bleeding was normal (for a year!) but I finally pushed for a colonoscopy which found he was. bleeding from his large intestines. When the two bleeds were cauterized, his hemoglobin went back up.
Just because one has ET/MF doesn 't mean the issues are always due to that illness.