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Member
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Join Date: Sep 2006
Location: near Allentown, PA
Posts: 209
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Member
Join Date: Sep 2006
Location: near Allentown, PA
Posts: 209
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i know of 2 people who have been involved in testing this drug.....there was someone on the old board who participated in a thalidomide study and had wonderful results from it, and i think the lenalomide is so close chemically that they're hoping for similar results....the odd thing about using it, is that thalidomide can actually CAUSE nerve damage, but still seems effective for neuropathic pain.
the lenalomide would, i think, not be part of the ongoing legal issues affecting the use of thalidomide (some of the cases involving affected children have yet to be settled) and i would guess that the company is hoping to make some money on the new version to help offset the horrendous legal costs they've been facing.
these drugs r fairly effective at slowing tumor progression....they inhibit cell splitting (which accounts for the birth defects).....the dicovery of neuropthic pain effect happened when they were treating a cancer patient who also had rsd.
i also knew of this from a person in an e-mail group that i joined years ago (the group has now disbanded)....when she used thalidomide she also had terrific results...it reduced her pain to minimal levels......her problem with it was simple.....when the study ended, she couldn't afford the pills.....her insurance company, of course, refused to pay, because of the 'experimental/investigational" loophole......the meds would have come to over $1,000 a month......that was thalidomide, and i have no idea if lenalomide would be equally prohibitive.
the people who participated in the study had to sign a long, complex agreement agreeing that they understood the risk of birth defect, agreeing to keep the medication out of the reach of children (duh!), agreeing NOT to get pregnant for, i think, at least a year, and waiving all legal action...it was far more restrictive than most drug study contracts.....so yes, i think we all have reason to be a bit spooked by the idea of using this drug.
but it's interesting, isn't it?
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best to all,
liz
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