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Your Questions
Kelly,
Hope your visit to Hopkins went well or as well as you expected. I was diagnosed with low grade MDS RA with Multilineal Dysplasia. Interesting enough Gore looked at my bone marrow slides and doesn't necessarily agree with the Dysplasia portion. He ordered a couple of more tests and actually said that I may not have MDS but something else closely related. Results back in about a week. Said that it was a little unusual that the only thing he is seeing with me are the very low platelet counts while everything else is at or close to nomal.
As far as treatments I'm trying to get into a NIH phase 2 trial for something new that Amgen is testing that is specific to platelets. Gore said he had heard good things about it and he was the one that actually told me about it. My doc in Phila also agreed. If I don't get into trial then Gore has suggested something else and basically told me that what the doc in Philly suggested next was not going to anything but waste 3 months. Been there and done that - so I guess I'll have to make some decisions about that in the not to distant future - but going for the trial right now.
The way I look at it now I really think you need to be at a teaching and research hospital with the best people available. If I can end up at Penn and Hopkins I certainly think I'll be in good hands and they will be aware of anything cutting edge. Penn is doing a ton of work on stem cells and devouting lots of resources.
The one very obvious thing to me - we have to be informed and we have to manage what's next. The Docs even the the good ones don't have all of the answers. Maybe soon but not right this moment. Hope you are doing well!
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