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Hi, Kristen.
The thing with Dr. List was pretty convoluted. I have a friend who works with companies that develop drugs, and she met with a guy (Greg Berk) in California whose company is developing something with a relation to MDS. Sorry, I don't recall the details of the drug. In any event, she told him about my situation and since he knows List, he volunteered to see if List would do a phone consult. I never saw List, but he didn't add anything to what I already knew about my situation, either, which at the time was "we don't know." He is very well known in MDS treatment circles.
As for the BMB and fibrosis, in my own situation, the inability to get the aspirate does mean that the findings from the BMB are of little use. Particularly because of my questionable monosomy 7. Only the aspirate makes for a good sample from which to do the FISH testing that shows what is happening with the chromosomes. They have tried with the bone sample and even with peripheral blood, but the results have been unclear.
I go back in two months for another BMB and hope hope hope it is worth all of the pain and time and energy. I hope the same for your mom, as well.
Best,
Beth
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