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High Risk Myelodysplastic Syndrome: What to Expect?
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (32)Comment receiving replies
We're going to start with what the doctor advises: 1 week of the Vidaza, then 3 weeks off, with 2 blood draws per week to monitor how things are going. My partner is prepared, however, to call it quits with the Vidaza if, in her estimation, she continues to go downhill. The way she's feeling right now (in spirit), she wants to get some sort of therapy underway, although she'll not be shy about telling her doctor let's stop this or change this or try something else. We had a phone chat earlier with the doctor's nurse; the nurse is very forthcoming––pulls no punches––which my partner and I both appreciate. ––Ray
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@ray666
Hi Ray. I was diagnosed 8 months ago at KU in Kansas city when my hemoglobin was at 4. I was told I was high risk because my blasts were 10% from a bone marrow biopsy. I am not a candidate for a BMT so this is my routine for the rest of my life. I am 71 with A-fib and Emphysema.
I did two 7 day courses of azacitidine and venetaclax 4 weeks apart. I had over a dozen blood transfusions to bring my hemoglobin up, plus one infusion of platelets.
I then went to MD Anderson for a consult with one of the premier Leukemia physicians in the world. After they did another biopsy my blasts had fallen to 1%. He told me that KU had me on the best course of treatment, so I have continued that. My hemoglobin is holding steady at 12 now and my I do treatments 5 weeks apart instead of 4.
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That’s great… Moms doctor was very forthcoming with her about what treatment “could” look like… both ends of spectrum…. Mom immediately knew she didn’t want any of it…
The doctor’s only question was if she was being pressured by family opinions either way…. She politely told him… “it’s my decision only” and he didn’t try to sway her whatsoever.