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47 with MDS
Hi,
It was first suspected that I had MDS in July of 2007. MDS, RA, monosomy 7 (kind of) and myelofibrosis (which makes BMBs unbelievably difficult and almost impossible to get the aspiration). I've been seen at Dana Farber primarily and they recommend SCT based on, as you say, Jill, the fact that I am young and healthy (both of those are relative terms). The fact is, I feel pretty great. I am on the maximum weekly Procrit dosage. My counts are relatively stable (WBC ~ 3.5; Crit ~28; platelets in the 70s). So, why would I voluntarily go through a SCT? That is what I have been struggling with. The fibrosis scares me. The monosomy 7 is seen in a relatively small number of cells. So far the only thing that I have heard consistently from the docs that I have seen (and I have had several "second" opinions now, looking for consensus) is that there are too few people like me to figure out the optimal course of action. Wait too long, you risk AML, or the fibrosis worsens. Too soon and give up a quality of life that I can't get back. Or worse. My sister is s perfect match, so that is something in my favor.
Anyway, Caroline, I am also out here and would love to be part of a group of "peers" dealing with this.
Thanks,
Beth
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