Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hi Patti, I was on 70 mg Sprycel from the beginning of the trial, July 2004. Side effects did not catch up with me until Dec. 2006, shorness of breath, pleural effusion, anemia. Right now I am back on 40 mg. Sprycel, plus 30 mg Prednizone for the PE, but also take 975 mg Ferrous Sulphate (iron) for the anemia. My hgb is 11.6, which is great, and the fatigue I had is gone. I also eat a banana a day. Don't know if it helps all that much, but it makes the Cheerios taste real good! Do you take iron? Bobby PATRICE SIMBULAN <psimbulan@...> wrote: , I was diagnosed in March 07 and I too switched from Gleevac (extreme toxicity) to Sprycel in July 2007. I had the usual side affects such as Gastro and SOB so I reduced the dose from 100 mg daily to 50 mg daily. I have gradually increased to 80mg daily and in October 07 reached PCRU. I have continued to have anemia and extreme fatigue so we reduced my dose to 75mg daily. Two weeks ago I went in to see my onc because I just felt so fatigued I really couldn't function. He did my CBC and my counts were good except my red count was low but actually up from my last appointment. My PCR continues to be 00.0 undetectable. My onc requested several other blood tests to check my B12, iron, thyroid, etc. to rule out any other issue contributing to my extreme fatigue. He also suggested I take a medication vacation until I came for my next appointment which would be in two weeks to see if the Sprycel was the culprit. My next appointment is for this Friday. I have felt so much better these last two weeks off the Sprycel. I didn't realize how bad I felt until I had some of my energy back. I have actually had a life and been able to do things again. I really don't want to stop taking the Sprycel because my response has been so good and the side effects are really not that bad except the extreme fatigue. I'm hoping to lower my dose again but I'm not sure how low will still maintain my complete response. What dose are you on now? And to others ready this post, is anyone else taking a lower than recommended dose of Sprycel and still having a good response? My oncologist is very hesitant to go any lower than 75 mg daily. Sprycel is still relatively new and I know they have already adjusted the starting dose from 140mg daily to 100mg daily so who's to say if an even lower dose might not be effective in some people. I am hoping to find a happy balance so that I can stay on Sprycel, have a complete response but also have a better quality of life. Am I asking for too much? Thanks for any advice, Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Sharon, I can't enlighten you anymore than this. My hgb was in the low 10 figure, now, and it took a while, it is in the upper 11. The banana a day I just started, really because I like them, but someone said they had iron in them. that's all I know, the pills work for me, BUT 975mg a day will constipate you, so I also take Colace and Metamucil. It's always something, take care, Bobby onthewtr@... wrote: I understood that iron pills or iron filled foods did not help the kind of anema we get because it is in marrow. Some one enliighten me. Sharon WISH I WAS ON KAUAI!!!!! Re: [ ] Re: (unknown) Aliza Hi Patti, I was on 70 mg Sprycel from the beginning of the trial, July 2004. Side effects did not catch up with me until Dec. 2006, shorness of breath, pleural effusion, anemia. Right now I am back on 40 mg. Sprycel, plus 30 mg Prednizone for the PE, but also take 975 mg Ferrous Sulphate (iron) for the anemia. My hgb is 11.6, which is great, and the fatigue I had is gone. I also eat a banana a day. Don't know if it helps all that much, but it makes the Cheerios taste real good! Do you take iron? Bobby PATRICE SIMBULAN net> wrote: , I was diagnosed in March 07 and I too switched from Gleevac (extreme toxicity) to Sprycel in July 2007. I had the usual side affects such as Gastro and SOB so I reduced the dose from 100 mg daily to 50 mg daily. I have gradually increased to 80mg daily and in October 07 reached PCRU. I have continued to have anemia and extreme fatigue so we reduced my dose to 75mg daily. Two weeks ago I went in to see my onc because I just felt so fatigued I really couldn't function. He did my CBC and my counts were good except my red count was low but actually up from my last appointment. My PCR continues to be 00.0 undetectable. My onc requested several other blood tests to check my B12, iron, thyroid, etc. to rule out any other issue contributing to my extreme fatigue. He also suggested I take a medication vacation until I came for my next appointment which would be in two weeks to see if the Sprycel was the culprit. My next appointment is for this Friday. I have felt so much better these last two weeks off the Sprycel. I didn't realize how bad I felt until I had some of my energy back. I have actually had a life and been able to do things again. I really don't want to stop taking the Sprycel because my response has been so good and the side effects are really not that bad except the extreme fatigue. I'm hoping to lower my dose again but I'm not sure how low will still maintain my complete response. What dose are you on now? And to others ready this post, is anyone else taking a lower than recommended dose of Sprycel and still having a good response? My oncologist is very hesitant to go any lower than 75 mg daily. Sprycel is still relatively new and I know they have already adjusted the starting dose from 140mg daily to 100mg daily so who's to say if an even lower dose might not be effective in some people. I am hoping to find a happy balance so that I can stay on Sprycel, have a complete response but also have a better quality of life. Am I asking for too much? Thanks for any advice, Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 I understood that iron pills or iron filled foods did not help the kind of anema we get because it is in marrow. Some one enliighten me. Sharon WISH I WAS ON KAUAI!!!!! Re: [ ] Re: (unknown) Aliza Hi Patti, I was on 70 mg Sprycel from the beginning of the trial, July 2004. Side effects did not catch up with me until Dec. 2006, shorness of breath, pleural effusion, anemia. Right now I am back on 40 mg. Sprycel, plus 30 mg Prednizone for the PE, but also take 975 mg Ferrous Sulphate (iron) for the anemia. My hgb is 11.6, which is great, and the fatigue I had is gone. I also eat a banana a day. Don't know if it helps all that much, but it makes the Cheerios taste real good! Do you take iron? Bobby PATRICE SIMBULAN <psimbulanverizon (DOT) <mailto:psimbulan%40verizon.net> net> wrote: , I was diagnosed in March 07 and I too switched from Gleevac (extreme toxicity) to Sprycel in July 2007. I had the usual side affects such as Gastro and SOB so I reduced the dose from 100 mg daily to 50 mg daily. I have gradually increased to 80mg daily and in October 07 reached PCRU. I have continued to have anemia and extreme fatigue so we reduced my dose to 75mg daily. Two weeks ago I went in to see my onc because I just felt so fatigued I really couldn't function. He did my CBC and my counts were good except my red count was low but actually up from my last appointment. My PCR continues to be 00.0 undetectable. My onc requested several other blood tests to check my B12, iron, thyroid, etc. to rule out any other issue contributing to my extreme fatigue. He also suggested I take a medication vacation until I came for my next appointment which would be in two weeks to see if the Sprycel was the culprit. My next appointment is for this Friday. I have felt so much better these last two weeks off the Sprycel. I didn't realize how bad I felt until I had some of my energy back. I have actually had a life and been able to do things again. I really don't want to stop taking the Sprycel because my response has been so good and the side effects are really not that bad except the extreme fatigue. I'm hoping to lower my dose again but I'm not sure how low will still maintain my complete response. What dose are you on now? And to others ready this post, is anyone else taking a lower than recommended dose of Sprycel and still having a good response? My oncologist is very hesitant to go any lower than 75 mg daily. Sprycel is still relatively new and I know they have already adjusted the starting dose from 140mg daily to 100mg daily so who's to say if an even lower dose might not be effective in some people. I am hoping to find a happy balance so that I can stay on Sprycel, have a complete response but also have a better quality of life. Am I asking for too much? Thanks for any advice, Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 and CMLers... I am on Sprycel for only 3.5 months as an initial drug (no failure on Gleevec first).? Yes the side effects kinda cycle through, but the fatigue is brutal.? It does get better, but I am still very very tired comparatively with what would be 'normal' for me. ? Hang in there and I'll keep you posted on the trial and if they let me lower the dose down to 75 or 80mg per day.? I kinda doubt it, but I hope so!!! ? Happy healthy days to you all, Rhonda [ ] Re: (unknown) Aliza , I was diagnosed in March 07 and I too switched from Gleevac (extreme toxicity) to Sprycel in July 2007. I had the usual side affects such as Gastro and SOB so I reduced the dose from 100 mg daily to 50 mg daily. I have gradually increased to 80mg daily and in October 07 reached PCRU. I have continued to have anemia and extreme fatigue so we reduced my dose to 75mg daily. Two weeks ago I went in to see my onc because I just felt so fatigued I really couldn't function. He did my CBC and my counts were good except my red count was low but actually up from my last appointment. My PCR continues to be 00.0 undetectable. My onc requested several other blood tests to check my B12, iron, thyroid, etc. to rule out any other issue contributing to my extreme fatigue. He also suggested I take a medication vacation until I came for my next appointment which would be in two weeks to see if the Sprycel was the culprit. My next appointment is for this Friday. I have felt so much better these last two weeks off the Sprycel. I didn't realize how bad I felt until I had some of my energy back. I have actually had a life and been able to do things again. I really don't want to stop taking the Sprycel because my response has been so good and the side effects are really not that bad except the extreme fatigue. I'm hoping to lower my dose again but I'm not sure how low will still maintain my complete response. What dose are you on now? And to others ready this post, is anyone else taking a lower than recommended dose of Sprycel and still having a good response? My oncologist is very hesitant to go any lower than 75 mg daily. Sprycel is still relatively new and I know they have already adjusted the starting dose from 140mg daily to 100mg daily so who's to say if an even lower dose might not be effective in some people. I am hoping to find a happy balance so that I can stay on Sprycel, have a complete response but also have a better quality of life. Am I asking for too much? Thanks for any advice, Patti Quote Link to comment Share on other sites More sharing options...
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