Quote:
Originally Posted by cheri
What is the dosage at the clinical trial? And what is the advantage to doing a clinical trial, rather than have your Dr prescribe it for you? Since I live alone, Clinical trials are virtually impossible.
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Hey Cheri!
I've been reading about your struggle with this fever; I hope it gets under control soon.
Dr. Dumitriu tells me the dose is 400mg 2x/day -- so 800 mg per day, which is pretty huge! The dose can be halved if necessary, though they figure that will be rare.
For me, the clinical trial participation sort of feeds into my whole desire to have a storyline, know what the theory is behind using the drug, and so on. Plus, I figure that whatever they learn from me will help someone else down the line.
From a practical perspective, the drugs and treatment at NIH are free, since it's a government operation. That definitely beats negotiating with my insurance company to try to get them to cover an off-label use (though I haven't really tried that, so I don't know how much of a problem it would be -- probably not much with an old drug like Danazol. I haven't checked the price, but surely it's not too expensive. Getting them to pay for Revlimid, on the other hand, might be a lot harder, if I went that route.)
My wife generally goes with me when I travel to Bethesda, though I suppose I could swing it on my own. I did have that one fainting spell after a bone marrow biopsy . . . that wouldn't have been too fun on my own.
If that gator gets too close, give him a kick for me!
Take care!
Greg