Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi Jane and welcome to the club that nobody really wants to be a member of. Your side effects were just like mine when I started on Gleevec. It made me very tired. I thought it would never end, but after about 9 months on Gleevec, it simply stopped. I keep looking for side effects but can't find any. I started the Zero Club the day I started taking Gleevec (it was called STI572 in the early days). That was in March 2001. Every time that someone on the list reported that their count was 0/20 via BMB I assigned them a number. That is how the Zero Club started. In September 2001 I became # 102 in my own club. My most recent entry is # 941 and I hope to see you join real soon. It is a club of HOPE. Please do your homework before opting for a BMT. Did you doctor mention that up to 20% of the patients that undergo a BMT are dead within 12 months from complications of the BMT. Only 50% make it past 5 years. Zavie Zavie (age 67) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Zero club amd BMT Well thanks for the responses. Nice to feel welcome and also nice to find others who are at a similar stage to me. I have 2 questions (so far) ...what is the zero club? And the next one is longer.... My onncologist and the haemotologist I saw both seem to feel that because I am " so young " (47 is young?) I should be considering a Bone Marrow Transplant within a year of diagnosis. My gut is telling me that if, in a years time, the Gleevec is still doing its job why should I go through the transplant? When I say this to them they just shake their heads wisely and tell me they understand why I should feel that way but Gleevec is not a cure and the BMT is the only way to go. Am I being naive to think this way? Especially if I continue to tolerate the Gleevec well? By the way, if you are wondering about the weird name..Regent and Mahogany are my horses. Jane is my own name. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > Well thanks for the responses. Nice to feel welcome and also nice > to find others who are at a similar stage to me. > > I have 2 questions (so far) ...what is the zero club? > > And the next one is longer.... > > My onncologist and the haemotologist I saw both seem to feel that > because I am " so young " (47 is young?) I should be considering a > Bone Marrow Transplant within a year of diagnosis. My gut is > telling me that if, in a years time, the Gleevec is still doing its > job why should I go through the transplant? When I say this to them > they just shake their heads wisely and tell me they understand why I > should feel that way but Gleevec is not a cure and the BMT is the > only way to go. > > Am I being naive to think this way? Especially if I continue to > tolerate the Gleevec well? > > By the way, if you are wondering about the weird name..Regent and > Mahogany are my horses. Jane is my own name. > Hi Jane and once again welcome to the group. Exactly what zavie says, do your homework before you enter bmt. I too was diagnosed by a great Oncol. and he also told me because of my age (42) he said it would be a good idea to have a transplant within 2 years. Well ive now just passed the 3 year mark and his mind changes all the time as he said its very promising with the new drugs coming out. so you need to weigh out the good, the bad and the evil of bmt. Do research on the new drugs coming out..I dont know what Africa is like with Meds and how far you are behind America in getting them, us here in Australia can be up to 3 years...so just do you homework and i wish you well what ever decision you make.. susie leech dx 2002 currently of Gleevec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi, Have to put my 2 cents. I won't tell you not to get a BMT, but I will tell you to do " ALOT OF RESEARCH " before doing it!!! My doctor in Houston (MD ANderson) has point blank told me it isn't necessary to have a BMT, stay on the Gleevec and if anything happens there are other drugs out there that can be used. I have been on Gleevec for almost 3 years (march 03)..cant believe how time has flown and have been in remission since july 03, so the odds are good. Some do well with the BMT, some don't!!! and i think the majority don't from what i have seen on this board. So, I think a second opinion would be good and lots of research! Ask Zavie, he will point you into the right direction on info!!! Penny Susie <leechys@...> wrote: > > Well thanks for the responses. Nice to feel welcome and also nice > to find others who are at a similar stage to me. > > I have 2 questions (so far) ...what is the zero club? > > And the next one is longer.... > > My onncologist and the haemotologist I saw both seem to feel that > because I am " so young " (47 is young?) I should be considering a > Bone Marrow Transplant within a year of diagnosis. My gut is > telling me that if, in a years time, the Gleevec is still doing its > job why should I go through the transplant? When I say this to them > they just shake their heads wisely and tell me they understand why I > should feel that way but Gleevec is not a cure and the BMT is the > only way to go. > > Am I being naive to think this way? Especially if I continue to > tolerate the Gleevec well? > > By the way, if you are wondering about the weird name..Regent and > Mahogany are my horses. Jane is my own name. > Hi Jane and once again welcome to the group. Exactly what zavie says, do your homework before you enter bmt. I too was diagnosed by a great Oncol. and he also told me because of my age (42) he said it would be a good idea to have a transplant within 2 years. Well ive now just passed the 3 year mark and his mind changes all the time as he said its very promising with the new drugs coming out. so you need to weigh out the good, the bad and the evil of bmt. Do research on the new drugs coming out..I dont know what Africa is like with Meds and how far you are behind America in getting them, us here in Australia can be up to 3 years...so just do you homework and i wish you well what ever decision you make.. susie leech dx 2002 currently of Gleevec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Thanks for the information and the opinions. The reason I am probing this is that I am the first patient that my oncologist is treating with Gleevec and the haemotplogist I saw is like the BMT hero of South Africa. All of which makes me a little sceptical about the path that they seem to be keen to put me on. I will go ahead and see if my brother is a match (tests next Tuesday) and I need to see what impact the Gleevec is having when I have a Bone Marrow Aspiration in about 2 months time. After that I may be in a better position to think about this all. In the meantime, I am going for blood counts and liver function tests every 14 days (had the first today day14 of Gleevec) and will get results tomorrow. Does this sound like a reasonable approach to you guys? Jane Dx Nov 05 400mg Glevvec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Thanks Zavie. Planning on joining the zero club soon! About this being the club nobody wants to join...a colleague of mine just died from a brain tumour 4 weeks after diagnosis. After that I am grateful to be in this club. So much is hopeful actually. From what I can gather, you are the group oracle ;-)so I take your advice seriously especially as it is very close to what mu gut is telling me. At my advanced age (47) I am finally learning to listen to my gut. Mind you, it is such an enormous one one could hardly ignore it! Trust me to have to take cancer medication that makes you GAIN weight! Although even that has not happened to me....yet. > > Hi Jane and welcome to the club that nobody really wants to be a member > of. > > Your side effects were just like mine when I started on Gleevec. It made > me very tired. I thought it would never end, but after about 9 months on > Gleevec, it simply stopped. I keep looking for side effects but can't > find any. > > I started the Zero Club the day I started taking Gleevec (it was called > STI572 in the early days). That was in March 2001. Every time that > someone on the list reported that their count was 0/20 via BMB I > assigned them a number. That is how the Zero Club started. In September > 2001 I became # 102 in my own club. My most recent entry is # 941 and I > hope to see you join real soon. It is a club of HOPE. > > Please do your homework before opting for a BMT. Did you doctor mention > that up to 20% of the patients that undergo a BMT are dead within 12 > months from complications of the BMT. Only 50% make it past 5 years. > > Zavie > > Zavie (age 67) > 67 Shoreham Avenue > Ottawa, Canada, dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > PCRU 5/02 at RVH > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > > [ ] Zero club amd BMT > > Well thanks for the responses. Nice to feel welcome and also nice > to find others who are at a similar stage to me. > > I have 2 questions (so far) ...what is the zero club? > > And the next one is longer.... > > My onncologist and the haemotologist I saw both seem to feel that > because I am " so young " (47 is young?) I should be considering a > Bone Marrow Transplant within a year of diagnosis. My gut is > telling me that if, in a years time, the Gleevec is still doing its > job why should I go through the transplant? When I say this to them > they just shake their heads wisely and tell me they understand why I > should feel that way but Gleevec is not a cure and the BMT is the > only way to go. > > Am I being naive to think this way? Especially if I continue to > tolerate the Gleevec well? > > By the way, if you are wondering about the weird name..Regent and > Mahogany are my horses. Jane is my own name. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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