Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Chery Anne, So glad you're doing well with this creative approach. Do you know anyone else on this regimen and how they're doing? L [ ] Magic and Cancer Hello All, I haven't posted here in a while but here are my comments. I think the Globe and Mail article was fairly balanced and represented the hardships - thanks for bringing them up Tracey, as well as some of the blessings - Ron, Zavie and Eleanor being in a slightly different age category, give us a different perspective. In defense of Rita and the reference to magic, I think I know where she is coming from. When we consider that Gleevec isn't the " first " targeted drug, actually Retinoic Acid, or Vitamin A which is used to " CURE " APL was the first targeted drug (Suzan M. taught us that). Using words like " magic " is deceptive because it diminishes the research, work and dedication our Doctors (and Dr. D. specifically in the case of Gleevec) poured into getting this drug to market. As we all know, CML is an incredibly complex disease and we still have much to learn about it. Like everyone else I am happy for my fellow CMLers who have achieved a level of remission with with Gleevec. But cancer is a formidable enemy and remission does not equal cure. As long as there are stem cells surviving (and sleeping happily in a quiescent state) then resistance and relapse are concerns. I prefer to think that there was nothing magical about the research and determination that goes into discovering these life saving drugs. I believe that they represent many long hours of painstaking research and testing and re-testing, then the collective holding of our breath while we all wait to see if this drug works or not. From looking over the list I see there was a discussion about interferon. Yes, I have gone back to interferon and grateful that it was still an option for me. I am on low dose pegylated interferon and doing incredibly well. Why did I switch back? I developed kidney problems, probably as a result of a kidney problem during my adolescence. Pegylated INF is quite remarkable in that the side effects are greatly diminished. I can say this because I have tried both. I only inject once every 10 days which gives me plenty of time to " forget " about CML. I usually have only a very slight achy feeling two days after injecting. No more GI problems, no more low Hgb, and I enjoyed an incredible tan from the summer sun which hasn't occurred in over five years. I was careful with sun screen though. I lost 15 lbs without switching my diet and I exercise and work out more. The Gleevec " foggy " brain is gone. I am not doing a sales pitch for INF, although I admit it sounds like one. As I write this there is the pan European trial called the SPIRIT trial using combinations of INF and Gleevec. Patients will be given either 400 mg of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients in the combo arm will eventually be weaned off of IM and then eventually be weaned off of INF and be closely monitored. I am in contact with patients who have stopped IM and are enjoying incredibly low level PCR and watching their PCR levels drop even further. This is a hopeful sign. After 25 years of INF science still doesn't completely understand how it works, but this is all interesting. I hear there is a trial starting in Israel, and then there is one starting at Hopkins. I sure wish there would be something here in Canada. All this to say that low dose Peg IFN cannot at all be compared to the horror stories of pre Gleevec IFN, and I would encourage anyone out there thinking about a combo trial to give it a try. Especially if you are younger. Will I stay on IFN? Who knows? I could go to either Dasatinib or Nilotinib, although most experts would prefer Dasatinib, but I am grateful for having choices. For now I continue to be in CCR and am close to a 3 log reduction, you do not need to be PCRU on IFN - but it sure would be nice ;-). It was not easy giving up my PCRU status on Gleevec, but I didn't like thinking about the possibility of dialysis. We will all need to manage ourselves according to what works best for us individually. I encourage the competition because it is clear to me we will need even more choices as time goes on. But fingers are crossed for a cure. Now, if humanity can figure out a way to get these drugs to all patients regardless of their financial status and where they live, well, now that just might be getting a little closer to magic. Peace, Love and all groovy things, Cheryl-Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hello , Good to hear from you. I do not know of anyone else local to me who is doing this. My reason for going back to IFN was purely to give my kidneys a rest. Having had a prior good experience with IFN, it was the least risky option for me. Dastinib and Nilotinib are good other choices, but both can be harsh on other blood counts. But I would go to them if I had to. However, I am in touch with patients internationally who were in combo trials and are now being maintained on low dose Peg IFN and they are doing very well (knock on wood). Cheers! Cheryl-Anne > > Hi Chery Anne, > > So glad you're doing well with this creative approach. Do you know anyone else on this regimen and how they're doing? > > L > [ ] Magic and Cancer > > > Hello All, > > I haven't posted here in a while but here are my comments. > > I think the Globe and Mail article was fairly balanced and represented the > hardships - thanks for bringing them up Tracey, as well as some of the > blessings - Ron, Zavie and Eleanor being in a slightly different age > category, give us a different perspective. > > In defense of Rita and the reference to magic, I think I know where she is > coming from. When we consider that Gleevec isn't the " first " targeted drug, > actually Retinoic Acid, or Vitamin A which is used to " CURE " APL was the > first targeted drug (Suzan M. taught us that). Using words like " magic " is > deceptive because it diminishes the research, work and dedication our > Doctors (and Dr. D. specifically in the case of Gleevec) poured into > getting this drug to market. As we all know, CML is an incredibly complex > disease and we still have much to learn about it. > > Like everyone else I am happy for my fellow CMLers who have achieved a level > of remission with with Gleevec. But cancer is a formidable enemy and > remission does not equal cure. As long as there are stem cells surviving > (and sleeping happily in a quiescent state) then resistance and relapse are > concerns. > > I prefer to think that there was nothing magical about the research and > determination that goes into discovering these life saving drugs. I believe > that they represent many long hours of painstaking research and testing and > re-testing, then the collective holding of our breath while we all wait to > see if this drug works or not. > > From looking over the list I see there was a discussion about interferon. > Yes, I have gone back to interferon and grateful that it was still an option > for me. I am on low dose pegylated interferon and doing incredibly well. > Why did I switch back? I developed kidney problems, probably as a result of > a kidney problem during my adolescence. Pegylated INF is quite remarkable > in that the side effects are greatly diminished. I can say this because I > have tried both. I only inject once every 10 days which gives me plenty of > time to " forget " about CML. I usually have only a very slight achy feeling > two days after injecting. No more GI problems, no more low Hgb, and I > enjoyed an incredible tan from the summer sun which hasn't occurred in over > five years. I was careful with sun screen though. I lost 15 lbs without > switching my diet and I exercise and work out more. The Gleevec " foggy " > brain is gone. I am not doing a sales pitch for INF, although I admit it > sounds like one. > > As I write this there is the pan European trial called the SPIRIT trial > using combinations of INF and Gleevec. Patients will be given either 400 mg > of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients in > the combo arm will eventually be weaned off of IM and then eventually be > weaned off of INF and be closely monitored. I am in contact with patients > who have stopped IM and are enjoying incredibly low level PCR and watching > their PCR levels drop even further. This is a hopeful sign. After 25 years > of INF science still doesn't completely understand how it works, but this is > all interesting. I hear there is a trial starting in Israel, and then there > is one starting at Hopkins. I sure wish there would be something here > in Canada. > > All this to say that low dose Peg IFN cannot at all be compared to the > horror stories of pre Gleevec IFN, and I would encourage anyone out there > thinking about a combo trial to give it a try. Especially if you are > younger. > > Will I stay on IFN? Who knows? I could go to either Dasatinib or > Nilotinib, although most experts would prefer Dasatinib, but I am grateful > for having choices. For now I continue to be in CCR and am close to a 3 log > reduction, you do not need to be PCRU on IFN - but it sure would be nice > ;-). It was not easy giving up my PCRU status on Gleevec, but I didn't like > thinking about the possibility of dialysis. > > We will all need to manage ourselves according to what works best for us > individually. I encourage the competition because it is clear to me we will > need even more choices as time goes on. But fingers are crossed for a cure. > > Now, if humanity can figure out a way to get these drugs to all patients > regardless of their financial status and where they live, well, now that > just might be getting a little closer to magic. > > Peace, Love and all groovy things, > > Cheryl-Anne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hello Cheryl Anne, Thanks for writing back and best of luck with this regimen. I'm on Sprycel and so far )knock on wood!) my counts have remained stable and my white count is even up to 5 after hovering around 3 and lower on Gleevec for years. I'll be interested in how you do and perhaps this will be a viable answer for others. Happy Holidays! [ ] Magic and Cancer > > > Hello All, > > I haven't posted here in a while but here are my comments. > > I think the Globe and Mail article was fairly balanced and represented the > hardships - thanks for bringing them up Tracey, as well as some of the > blessings - Ron, Zavie and Eleanor being in a slightly different age > category, give us a different perspective. > > In defense of Rita and the reference to magic, I think I know where she is > coming from. When we consider that Gleevec isn't the " first " targeted drug, > actually Retinoic Acid, or Vitamin A which is used to " CURE " APL was the > first targeted drug (Suzan M. taught us that). Using words like " magic " is > deceptive because it diminishes the research, work and dedication our > Doctors (and Dr. D. specifically in the case of Gleevec) poured into > getting this drug to market. As we all know, CML is an incredibly complex > disease and we still have much to learn about it. > > Like everyone else I am happy for my fellow CMLers who have achieved a level > of remission with with Gleevec. But cancer is a formidable enemy and > remission does not equal cure. As long as there are stem cells surviving > (and sleeping happily in a quiescent state) then resistance and relapse are > concerns. > > I prefer to think that there was nothing magical about the research and > determination that goes into discovering these life saving drugs. I believe > that they represent many long hours of painstaking research and testing and > re-testing, then the collective holding of our breath while we all wait to > see if this drug works or not. > > From looking over the list I see there was a discussion about interferon. > Yes, I have gone back to interferon and grateful that it was still an option > for me. I am on low dose pegylated interferon and doing incredibly well. > Why did I switch back? I developed kidney problems, probably as a result of > a kidney problem during my adolescence. Pegylated INF is quite remarkable > in that the side effects are greatly diminished. I can say this because I > have tried both. I only inject once every 10 days which gives me plenty of > time to " forget " about CML. I usually have only a very slight achy feeling > two days after injecting. No more GI problems, no more low Hgb, and I > enjoyed an incredible tan from the summer sun which hasn't occurred in over > five years. I was careful with sun screen though. I lost 15 lbs without > switching my diet and I exercise and work out more. The Gleevec " foggy " > brain is gone. I am not doing a sales pitch for INF, although I admit it > sounds like one. > > As I write this there is the pan European trial called the SPIRIT trial > using combinations of INF and Gleevec. Patients will be given either 400 mg > of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients in > the combo arm will eventually be weaned off of IM and then eventually be > weaned off of INF and be closely monitored. I am in contact with patients > who have stopped IM and are enjoying incredibly low level PCR and watching > their PCR levels drop even further. This is a hopeful sign. After 25 years > of INF science still doesn't completely understand how it works, but this is > all interesting. I hear there is a trial starting in Israel, and then there > is one starting at Hopkins. I sure wish there would be something here > in Canada. > > All this to say that low dose Peg IFN cannot at all be compared to the > horror stories of pre Gleevec IFN, and I would encourage anyone out there > thinking about a combo trial to give it a try. Especially if you are > younger. > > Will I stay on IFN? Who knows? I could go to either Dasatinib or > Nilotinib, although most experts would prefer Dasatinib, but I am grateful > for having choices. For now I continue to be in CCR and am close to a 3 log > reduction, you do not need to be PCRU on IFN - but it sure would be nice > ;-). It was not easy giving up my PCRU status on Gleevec, but I didn't like > thinking about the possibility of dialysis. > > We will all need to manage ourselves according to what works best for us > individually. I encourage the competition because it is clear to me we will > need even more choices as time goes on. But fingers are crossed for a cure. > > Now, if humanity can figure out a way to get these drugs to all patients > regardless of their financial status and where they live, well, now that > just might be getting a little closer to magic. > > Peace, Love and all groovy things, > > Cheryl-Anne > > Quote Link to comment Share on other sites More sharing options...
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