desmoidtumoursurvivors : Desmoid Tumour Survivors - A place for desmoidians, their friends and family

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Well, I'm not sure what to say here, so here goes. We all live with desmoids, or know someone who does, so here is a place where we can get together and share anything we like. I don't care if it's information, well-wishing or jokes, as long as people get something out of it. If it is jokes, then perhaps we can bear in mind there are some subjects we shouldn't joke about (ur, well, I'm sure there are. :-o). Enough. Enjoy!!!!!!!! btw, I've added a link for the Acor Organisation. It's their home page for mailing lists but they have one for Desmoids and so may be able to help people. :)> Oh, there's one there for FAP-GS as well.

Jules.

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Go back on chemo It has been about two years from the first time I was on chemo(MTX and Vinblastine). I was on it for one year the first time and it worked but the tumor has Posted - Sat Oct 17, 2009 5:37 am	tom tmarino20 Offline Send Email
Re: FAP/Gardner Syndrome with Abdominal Desmoids Hi, Chris When I was diagnosed with an FAP related desmoid in my abdominal wall, I was put on a trial of 20mg of tamoxifen daily. The desmoid took about 3 Posted - Wed Jul 8, 2009 12:17 pm	Jules paynter_waau Offline Send Email
Re: FAP/Gardner Syndrome with Abdominal Desmoids I have a mesenteric desmoid tumor that has been reduced in size and kept static. My initial treatment was with an NSIAD called SULINDAC that shrunk the tumor Posted - Tue Jul 7, 2009 6:17 pm	Armstrong John windance_98 Offline Send Email
Re: FAP/Gardner Syndrome with Abdominal Desmoids I had no pain from my abdominal desmoids except when it grew large it pressed on my leg nerves. I had complete surgical resection of that muscle with 1/2 Posted - Tue Jul 7, 2009 4:21 pm	brandy adams breeadams Online Now Send Email
FAP/Gardner Syndrome with Abdominal Desmoids I have a question regarding the above. What treatment have you had for these, what has worked, what has not? And what if any side effects have you had? My Mom Posted - Tue Jul 7, 2009 3:58 pm	abbc9092 Offline Send Email
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