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Blood Cancers & Disorders | Last Active: 1 day ago | Replies (82)
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Thanks @shmerdloff .
I would have volunteered quickly for a BMB!! I was so short-of-breath for decades (tho it was subtle when I was younger). That dyspnea knocked me out of hiking (my favorite activity); eventually even long walks at sea level were a problem. I cycled thru (useless-for-me) asthma meds and cardiac trials. No help at all. I acquired the label "anxious." (Do men get that label? It is hard to shake. I was the most relaxed person in any group back when these problems started.)
Newly dx'ed with AML, I am a patient with a "complex karyotype and poor prognosis." My hem-onc doc has not applied a label; I have super-abundant mutations and a dozen or so weird cell markers. My BMB reports describe weird mutant combos not seen before (or not reported on at least), and new mutations of old mutations, etc. I will be lucky if chemo works. I feel certain that some of this damage was acquired decades ago. (Tho it only showed up with near-constant anemia, rare petechial rashes and chronic shortness-of-breath + extreme altitude intolerance.
How did other MDS patients get diagnosed earlier? (More severe symptoms? More abnormal labs? I am very curious. I have good insurance; seemed to have smart doctors....
Thanks!