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Thanks!
Thanks so much Greg and Berry. Very good advice! Thanks for the links, Greg -- I have checked them out and they are extremely helpful. I have been reading all I can about this disease (or diseases -- really a complex of syndromes with so much individual variation), but there are times when I am overwhelmed by all the info. At the end of the day though, I am ultimately better informed, and better equipped to go forward. I am seeing a doctor at Beth Israel Deaconess Medical Center in Boston, whom I like very much, and seems very well informed. Dana Farber is, obviously, the big gun in the area, but with Harvard (and its affiliated hospitals -- Dana Farber and Beth Israel are two of them) and all the other universities and hospitals here, medical care is pretty top notch. I'm wondering about getting a second opinion though, just because it seems the prudent thing to do with a serious Dx.
At any rate, I am proceeding conservatively. I must say that Greg's informed and eloquent posts resonate with me, because I am in somewhat the same frame of mind as he. And, luckily, my disease is at a stage (watch-and-wait, at the moment) that gives me a bit of time to digest all the great information here. I am debating getting an RBC transfusion though, so that I can do some of the more intense physical activity to which I'm accustomed. My doc says that it's worth a try to use transfusion on an "as needed" basis, to give myself a little boost for specific aerobic activities. He also is recommending growth factors (Epogen) though, which I'm on the fence about (I'm drug averse -- something I have to get over, I know). My natural EPO is in the high 300's, so I have some wiggle room to see if Epogen works or not. Not sure whether to try it or not. IST will undoubtedly be on the horizon for me if my counts keep declining. In that vein (no pun intended), thanks, Greg, for the Campath info. I will ask my doc about it at my next appt. in a month.
marmab
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