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Hello Mary E,
I am new to this forum as well, and it is actually your question that made me register. I too am previous Acute Myeloid Leukemia patient, diagnosed and treated with chemo only in 2013. Then I lived healthy for two and a half years, until June this year, when my CBC:s slowly started to decline. In August after a bonemarrow aspiration I was diagnosed with tMDS (therapy related MDS, caused by one of the chemo drugs used to "cure" the first blood cancer).
When reading your post my first thought was whether the MDS you have is not therapy related as well? A hematologist can usually tell based on chromosome mutations that are common in therapy related MDS/AML, diagnose supported by the time passed since the first treatment.
I don't know about vitamins or any diet that could help long term. If it is therapy related, then prognosis is generally bad in comparison to de novo MDS.
In my case, I'm in my early forties, my doctors immediately decided I should have a transplant if possible. In the meantime I received another AML like induction chemotherapy cycle (amsacrine, cytarabine, etoposide, since daunurubicin, which I had had the first time, was ruled out due to heart toxicity). Luckily my marrow responded and I went from 9% blasts in marrow to only 1%. I am now receiving Vidaza as bridging towards transplant. As I understand it Vidaza is not a cure, it works well for some, but even then it can stop working any time and you won't know when that is. Depending on your situation, current state of health, age and many other things Vidaza may be a good option for you.
What I really wanted to say was: find out whether this MDS of yours is therapy related or not, and if it is, what options you have!
I wish you all the best.
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