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Question was: "So, if anyone out there is receiving thalidomide off label, I'd love to hear how you are responding!"
My friend's case is complicated by Lupus. Her tumors are now in her lungs and skin areas (not too sure what that means).
She reports being dizzy and having neuropathy. When they cut her dose she felt better but after onc visit this week the tumors are growing again -so her dose is back to what she had before. Last time this happened, the tumors shrank and so it seems to have a good effect - she just is getting to where tolerating it is difficult.
Apparently thalidomide is being given for multiple myeloma and Geraldine Ferraro (the politician) is taking it and has a web site. I have not yet looked at that site.
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