Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 Hi , the reason why im off Gleevec is cause i had such severe side effects with toxicity that I just had to give my body a rest..no ive not had any other treatment and yes you do have to take it till we die or transplant (thats what they tell us anyway). The other thing i was interested in is that you mentioned remission....Tim told me that its not remission if you have to take a drug to stay alive. Gleevec keeps it at bay but not remission. Some would disagree with that but im only repeating what my Onc. Tim tells me as ive mentioned to him that ive heard the term 'remission' alot on here. Susie Leech DX Nov 2002 > > > In a message dated 1/30/2006 5:19:59 P.M. Central Standard Time, > leechys@b... writes: > > ..its only now im toxic free..and > thats cause I am off Gleevec and have been for two months. > > > Suzie, how is it that you are off Gleevec? My doctor told me I would take > it until my dying day. > > I've never been on the high dose - started with 400 mgs daily and have > stayed there for two and a half years. I've been in remission for most of the > time, but the prospect of not taking it at all is very interesting. Did you > have some other treatment too? I'm too old for transplants. > > I do have the upset tummy and diahrrea sometimes. Depends on what I take it > with. If I take it with Ensure or a yogurt drink I don't get sick. If I > only take it with water it will do me in very quickly. > > I just joined the list and will enjoy hearing about all of your experiences. > in MN > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 At 12:33 PM 1/31/06 +0000, you wrote: > The >other thing i was interested in is that you mentioned >remission....Tim told me that its not remission if you have to take >a drug to stay alive. Gleevec keeps it at bay but not remission. >Some would disagree with that but im only repeating what my Onc. Tim > tells me as ive mentioned to him that ive heard the >term 'remission' alot on here. Hi and Susie, We don't really go into remission as they speak of it with other cancers......our disease is really managed or controlled by Gleevec, but we do remain drug dependent. Our goal is to have the fewest possible leukemia cells.....or minimal residual disease. It is more accurate to think of CCR as complete cytogenetic " response " (which is how Dr. Druker thinks of it) than remission. We are talking about the level of response that we have had to the drug. This goes even for PCRU.....this does not mean that you don't have any cml cells in your body (just undetectable by the level of testing we have available)..........which is why if you go off drug, you relapse (and get more ph+ cells). C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 In a message dated 1/31/2006 6:40:01 A.M. Central Standard Time, leechys@... writes: Gleevec keeps it at bay but not remission. Some would disagree with that but im only repeating what my Onc. Tim tells me as ive mentioned to him that ive heard the term 'remission' alot on here. Hi Susie, I guess that makes sense, but my oncologist refers to what I'm in as remission, so I do too. Sorry if that upsets some people. Sometimes I feel very curious to see what would happen if I quit taking it for awhile. Too chicken to do that though and I wouldn't want to make my oncologist angry at me. I'm just thankful that Gleevec was developed as I have lots of yarn to knit and fiber to spin before I'm through here on earth. To say nothing of the books to read and my family to love. in MN Quote Link to comment Share on other sites More sharing options...
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