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Originally Posted by PaulS
Hi - I've never posted before but have found the forums enormously helpful. I am 55 and was diagnosed with low risk MDS slightly over two years ago. Have been watching and waiting since, but in the last several months, after a bout of diverticulitis - my HG has declined to as low as 6 and I've needed several transfusions. We are planning to start lower intensity Vidaza treatment (5 days instead of 7) - and I am very nervous and not especially optimistic. If that fails they are thinking transplant. What should I expect from Vidaza - am I missing something or does it only work in a small percentage of patients? Anyone else go this route? Anything other thoughts/ideas? Thanks.
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I noticed on your post that you had/have recurring skin nodules. My late husband also had those for a while. Before his death in 2013, he was diagnosed with thrombocytopenia/pancytopenia at age 58 in 2006. In 2012, this changed to MDS which quickly changed to acute myeloid leukemia. He died in 2013 from complications of the chemo he was receiving in an attempt to prepare him for a bone marrow transplant. You may be aware that MDS, if no family history, is usually caused by environmental toxins. My husband was exposed to Agent Orange 1968-1969. Are you a Vietnam veteran, or do you have an occupational history which could have exposed you to toxins (like benzene and dioxin)? MDS is currently not on the presumptive list for AO, but many in the medical profession feel it should be. My husband also had diabetes and heart disease (both of which are on the list for AO).