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Old 02-18-2004, 11:23 AM   #1
jessica
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It's great to see this subject on the boards!My traditional chinese medicine doc has been encouraging me to research access to thalidomide for the past year!
Because thalidomide can causes severe teratogenic(birth)defects, prescribing of thalidomide has been severely restricted.An MD has to "pass" a certification to prescribe thalidomide before they are able.So you have to find a "certified" MD to do so, then if used for cancer tx, if would be off-label and not covered by insurance.Very frustrating, but not completely impossible.
So, if anyone out there is receiving thalidomide off label, I'd love to hear how you are responding!
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Old 02-18-2004, 02:23 PM   #2
Steph N.
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Jessica wrote:
"So, if anyone out there is receiving thalidomide off label, I'd love to hear how you are responding!"

I will try to find out more on how this was able to come about for the woman I know. I know which cancer center here in Seattle she goes to, and they are known for some experimental treatments at times. She fits the description of someone who has finally run out of good options as her disease spread. I will find out if it IS on a trial. It was her husband who told me she was now on thalidomide when I saw him on Monday. (He has also been fighting prostate cancer for the last 4 years - amazing couple!)
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Old 02-19-2004, 04:01 PM   #3
Anonymous
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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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