Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 Bobby what is xl 228 and what is it suppossed to do for you? And do you kno anything about vaccines or immunotherapy. Also if i am reading right you did the sprycel trial at MdHouston? Was there no place closer? Like Chicago or st louis? Debra Re: [ ] Re: Dr. Druker Hi, I'm one of the ones who tolerated the side effects of Gleevec,, but after 1 1/2 years I had not achieved CCR. I went on to Gleevec/Trisenox, Gleevec/Zarnestra, Sprycel, and altough I reached CCR on Sprycel, the side effects became intolerable. So now we're working on another trial, XL228, in CCR with very few side effects. To me, thanks to all these trials, I have lived about 8 years longer than I should have, had I not been in the trials. It isn't easy, and it would be just great if one of them would work and stay working without the agonizing side effects. I guess I'm saying, don't give up. If one doesn't work, look for another. And remember, we are putting stuff in our bodies that no one else has ever used, and it's a crap shoot - we have no idea if it will work or not, and we have no idea what effect these drugs are going to have on the rest of our body. like liver, kidneys, heart, skin, etc. So hang in there, if one doesn't suit you, another might. They all helped me to live to be 78, and I've been fighting this battle since 1995, and others have been at war with cml for over 30 years! Now THAT'S a battle !! good luck to everyone, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) > > I listened and watched Dr. Druker. I am confused.. Glevec was not as > wonderful as he makes it out to be. He is talking about the many that have > benefited from it. I did not. I wish it was that easy. Glevec tore me apart. > Inside and out. And when he talks about Glevec is he meaning all the other > medications like sprycel and tasigna also??????? > ____________ _________ > > Hi Sharon, > Gleevec is an amazing drug.......the most successful new cancer drug ever! > 90+% of newly diagnosed in chronic phase will go into a 'remission' and > tolerate the drug with acceptable side effects. Before Gleevec, cml was > mostly a fatal disease..... unless you survived a BMT. There is still a % > that Gleevec does not work well for, or they do not tolerate the > drug.....all these newer drugs would not even be here if it was not for > Gleevec (they are the sons/daughters of Gleevec!) > > Gleevec kept me alive until a more potent drug came along. I was on Gleevec > (mostly 800mg) for over 5 years....I have now been on Sprycel for 3 years > and this drug brought me to CCR.....but I still would not say that Gleevec > was not a great drug (even though it was not the complete answer for me). > There are very few drugs that have the success rate that Gleevec has....and > it is still considered to be front line treatment for cml. > > You can combat many of the side effects and other problems related to > taking a drug like this long term by working with a naturopath and > complementary medical care. Much of this is not in the realm of traditional > medicine or your local oncolgist. Dr. Druker is my primary onc and he has > no problem at all with me working with a naturopath and running her > suggestions by him and his pharmacist.. ...and the alternative care has been > beneficial. > > Some people do struggle more than others to find the best treatment for > themselves.. ..we have 2 such cml warriors on this list.....Bobbie and > Lottie....but their fighting spirit will keep them with us. The goal (per > Rockefeller, a fellow cmler) is to die from something other than > cml!! > C. > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospgcsli (DOT) stanford. edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
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