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MDS and anemia

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (82)

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Profile picture for blakeman @blakeman

How did you get your MDS diagnosis? I have had increasing dyspnea for decades. Plus severe reactions to altitudes over 500 feet. Finally it was years of "refractory anemia" and abnormally low #s of RBC's. IV iron was only slightly helpful. No one would investigate more. No bone marrow biopsies (my Hgb was 10-ish). Suddenly I had dangerous pancytopenias Marrow biopsy revealed AML. Now I am getting chemo for dozens of mutations and bizarre cell abnormalities. I have a "complex karyotype" and a "poor prognosis." I am still baffled that no doctor would look earlier for marrow mutations. What was the screening test that I missed? I complained to dozens of doctors at various major medical centers. Other organs were tested - year after year after year. Never my bone marrow. What went wrong???

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Replies to "How did you get your MDS diagnosis? I have had increasing dyspnea for decades. Plus severe..."

@blakeman
It was my blood numbers after my cancer treatment that was concerning. I had my oncologist go to another hospital, so i got a referral to a hematologist. City of Hope studies genetics, so my breast lump showed brca2 and a TP53 mutation. The hematologist looked at my blood as of that day getting lower numbers and not better after treatment and ordered a bone marrow biopsy.
I was a low to mid for AML. I had a bone marrow transplant April 9, 2024.

@blakeman
bone marrow biopsy