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MDS2018,
I didn't pay as much attention to RBC as I did to hemoglobin-just another way of measuring the same thing really. Both look at red blood cells. The lowest I went with hgb was 8, until the AML. That is rather unusual though. I had a really easy way of it with MDS.
Even now, although I have what's considered "the worst type of Leukemia with the poorest prognosis," I am really doing well. My hemo transfuses me whenever my hgb goes below 8. I stay home when my ANC goes below 500. And I've only needed platelets once, and then only because I was a little low for my port surgery.
It really varies from person to person. Some people start the 5q- MDS journey needing several transfusions then Revlimed stabilizes them. Others like me go years not needing anything. I never had the need to go on Revlimed. I'm doing decitabine now in preparation for a transplant.
I don't believe your wife's counts are unusual. What about those of you who have done Revlimed, how low did your RBC or hgb go while on Revlimed?
Blessings,
Barb
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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