http://health.groups.yahoo.com/group/desmoidtumoursurvivors/ Desmoid Tumour Survivors - A place for desmoidians, their friends and family Sat, 05 Dec 2009 22:48:05 GMT majella.meade http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1391 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1391 Hi Tsmmy, Thank you for your lovely response, I appreciate your thoughfulness, it is great to know that somebody out there understands, I am so sorry to hear Sat, 05 Dec 2009 04:52:20 GMT Jules http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1390 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1390 Hi, all What we have to remember is that desmoids are sneaky little buggers that have lots of tentacles that must be removed. Normally, that means that Fri, 04 Dec 2009 17:37:45 GMT tammy batchelder http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1389 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1389 Hi Majella,   I just received your email.  I am very sorry to hear what you are going thru.  I personally was diagnosed at 12 years old.  I just turned 40 Wed, 02 Dec 2009 11:08:52 GMT majella.meade http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1388 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1388 Hi Everybody, Im wondering if there is anybody who is struggling with very aggresive desmoids as I am. I do not have FAP. Ive spent the last three years having Sun, 29 Nov 2009 13:06:55 GMT gazbow27 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1387 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1387 unfortunately many people will swallow what the mainstream press print in the newspapers and what garbage is spewed out through the TV. People need to do their Sun, 29 Nov 2009 12:26:29 GMT Jules http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1386 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1386 I would suggest everyone ignore everything to do with the swine flu. Australia calls Victoria the "swine flu capital" of Australia, but that's only because Sat, 28 Nov 2009 03:46:39 GMT gazbow27 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1385 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1385 The Only Swine Flu Survival Guide You'll Ever Need - A Presentation by ANTHONY BECKETT TUESDAY 8TH DECEMBER, 2009 DOORS OPEN 7:30PM (UPSTAIRS)THE SHIP & MITRE Fri, 27 Nov 2009 05:12:16 GMT Jules http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1384 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1384 Okay, I have to thank you for the information on Zero Point Energy. It's totally unrelated to either this article or what we normally talk about, but I'm Fri, 27 Nov 2009 03:00:09 GMT gazbow27 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1383 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1383 The Only Swine Flu Survival Guide You'll Ever Need - A Presentation by ANTHONY BECKETT THURSDAY 10TH DECEMBER, 2009 DOORS OPEN 7:30PM (UPSTAIRS)THE SHIP & Sat, 17 Oct 2009 05:37:11 GMT tom http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1382 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1382 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 Wed, 08 Jul 2009 12:17:00 GMT Jules http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1381 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1381 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 Tue, 07 Jul 2009 18:17:46 GMT Armstrong John http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1380 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1380 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 Tue, 07 Jul 2009 16:21:58 GMT brandy adams http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1379 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1379 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 Tue, 07 Jul 2009 15:58:08 GMT abbc9092 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1378 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1378 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 Mon, 29 Jun 2009 01:20:25 GMT Dawn Kirchner http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1377 http://health.groups.yahoo.com/group/desmoidtumoursurvivors/message/1377 Hi Lenny, Absolutely try anything that you think would work for you. Compresses work really well. I 've even used mistle toe. But you must be careful. Jules is