Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 > . > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > Lab results noted a slight increase in creatin, which I told was a > side effect with those on long-term Gleevec. I've been on it for 10 > 1/2 years. I was given the option of switching to a new trial > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > Sprycel side effects, etc. ? I am staying on Gleevec at present, > but am wondering if I might be better off on a newer drug??? Thanks > for your help. Gay Bratton > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 i was on Gleevec for 9 months---had to switch to sprycel because of very very bad side effects. I was on Sprycel for three years. QofL ws much better but still had stomach issues and got lots of colds. Then I got plural effusion and stopped Sprycel and went on Tasigna--been on Tasigna for 2 years and have no side effects except maybe a little weight gain and a little hair looss that comes and goes. Other then that I feel normal and sometimes forget I have CML. also PCRU!! Sharon _____ From: [mailto: ] On Behalf Of Gay Bratton Sent: Wednesday, June 16, 2010 8:23 AM Subject: Re: [ ] Tasigna vs. Sprycel > . > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > Lab results noted a slight increase in creatin, which I told was a > side effect with those on long-term Gleevec. I've been on it for 10 > 1/2 years. I was given the option of switching to a new trial > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > Sprycel side effects, etc. ? I am staying on Gleevec at present, > but am wondering if I might be better off on a newer drug??? Thanks > for your help. Gay Bratton > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 There is a great article recently publised by The New England Journal of Medicine, you can get it on line at there website . It was published June 5 2010 so recent information, and great comparison. When you get to the main page just type in Chronic Myeloid Leukemia and it should come up. Sent from my Verizon Wireless BlackBerry Re: [ ] Tasigna vs. Sprycel > . > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > Lab results noted a slight increase in creatin, which I told was a > side effect with those on long-term Gleevec. I've been on it for 10 > 1/2 years. I was given the option of switching to a new trial > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > Sprycel side effects, etc. ? I am staying on Gleevec at present, > but am wondering if I might be better off on a newer drug??? Thanks > for your help. Gay Bratton > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 Hi Gay, The " nil " might be nilotinib which is the same thing as Tasigna. L Re: [ ] Tasigna vs. Sprycel > . > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > Lab results noted a slight increase in creatin, which I told was a > side effect with those on long-term Gleevec. I've been on it for 10 > 1/2 years. I was given the option of switching to a new trial > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > Sprycel side effects, etc. ? I am staying on Gleevec at present, > but am wondering if I might be better off on a newer drug??? Thanks > for your help. Gay Bratton > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 Thank you and I'll bet you're right. I am ashamed that I haven't done a better job of keeping up with all the new medications. I've been doing well on Gleevec for 10 + years and just haven't stayed up like I should. Gay On Jun 16, 2010, at 3:10 PM, seloew12 wrote: > Hi Gay, > > The " nil " might be nilotinib which is the same thing as Tasigna. > > L > Re: [ ] Tasigna vs. Sprycel > > > . > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > Lab results noted a slight increase in creatin, which I told was a > > side effect with those on long-term Gleevec. I've been on it for 10 > > 1/2 years. I was given the option of switching to a new trial > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > but am wondering if I might be better off on a newer drug??? Thanks > > for your help. > > Gay Bratton > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 Hi Gay: I remember when we both started on the Gleevec. You started just before me. I think we used to converse over the old CML at , and somehow we lost track as years went on with other things going on. You said your Creatnine was off. I always got my regular blood work, and all of a sudden my kidney functions were off. They even sent me to a Kidney Specialist. I was never a water drinker, and my nurse told me to start getting the water into my system to flush things out. I started to do that, and my numbers all came back to normal. I might have chronic kidney disease as I was told, but everytime I go see this doctor he tells me that my numbers are all where they should be and to come back in 6 months. I actually stopped seeing him, because with all my other doctors running blood work on me I can see if they go out of range again. Can I ask you if you get enough liquid in you. I have always been so bad with water etc. Now I make sure I drink it, even if I am up all night with the urinating. Just thought maybe you could try that before switching if its been working for you all these years. I will be on Gleevec 10 years this Oct. > > > . > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > Lab results noted a slight increase in creatin, which I told was a > > side effect with those on long-term Gleevec. I've been on it for 10 > > 1/2 years. I was given the option of switching to a new trial > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > wasn't mentioned. Can anyone give me a brief summary of Tasigna vs. > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > but am wondering if I might be better off on a newer drug??? Thanks > > for your help. > > Gay Bratton > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 , I was told that the reading was not a big concern---that they were watching it, and that the only thing that i could do was drink lots of water----just what you said. So.....I'm going to leave off the caffeine (except a cup of coffee in the morning) and start drinking lots more water and see what happens. It's good to hear from you and it's great to hear from someone else that's long term on Gleevec. Are you experiencing other side effects? I have acid reflux and gastric problems that seem to be pretty normal for Gleevec users. I also still have the muscle cramps and some joint problems. I wonder if they're associated with Gleevec or just my age.... Thanks for responding Gay On Jun 16, 2010, at 6:44 PM, A wrote: > Hi Gay: I remember when we both started on the Gleevec. You started > just before me. I think we used to converse over the old CML at > , and somehow we lost track as years went on with other things > going on. You said your Creatnine was off. I always got my regular > blood work, and all of a sudden my kidney functions were off. They > even sent me to a Kidney Specialist. I was never a water drinker, > and my nurse told me to start getting the water into my system to > flush things out. I started to do that, and my numbers all came back > to normal. I might have chronic kidney disease as I was told, but > everytime I go see this doctor he tells me that my numbers are all > where they should be and to come back in 6 months. I actually > stopped seeing him, because with all my other doctors running blood > work on me I can see if they go out of range again. > Can I ask you if you get enough liquid in you. I have always been so > bad with water etc. Now I make sure I drink it, even if I am up all > night with the urinating. > Just thought maybe you could try that before switching if its been > working for you all these years. > I will be on Gleevec 10 years this Oct. > > > > > > > . > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > > Lab results noted a slight increase in creatin, which I told was a > > > side effect with those on long-term Gleevec. I've been on it for > 10 > > > 1/2 years. I was given the option of switching to a new trial > > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > > wasn't mentioned. Can anyone give me a brief summary of Tasigna > vs. > > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > > but am wondering if I might be better off on a newer drug??? > Thanks > > > for your help. > > > > Gay Bratton > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 Hi Gay: It is great to see long term Gleevec users still on here and doing good. I did get GERD fromt the Gleevec. I have been on Nexium now for quite awhile, and no problems. I do get some gastro problems, but nothing to be concerned over. They come and go. I go for my colonoscopy every 5 years, and everything is fine there too. I still get the muscle cramps and joint problems. I have bad Arthritis though, and that seems to be my issue right now. I also have a overactive bladder, and when I drink all my water I am in the bathroom all night. Thats okay, as long as my kidney functions are doing good. Take Care. I think you will be fine. A. > Hi Gay: I remember when we both started on the Gleevec. You started > just before me. I think we used to converse over the old CML at > , and somehow we lost track as years went on with other things > going on. You said your Creatnine was off. I always got my regular > blood work, and all of a sudden my kidney functions were off. They > even sent me to a Kidney Specialist. I was never a water drinker, > and my nurse told me to start getting the water into my system to > flush things out. I started to do that, and my numbers all came back > to normal. I might have chronic kidney disease as I was told, but > everytime I go see this doctor he tells me that my numbers are all > where they should be and to come back in 6 months. I actually > stopped seeing him, because with all my other doctors running blood > work on me I can see if they go out of range again. > Can I ask you if you get enough liquid in you. I have always been so > bad with water etc. Now I make sure I drink it, even if I am up all > night with the urinating. > Just thought maybe you could try that before switching if its been > working for you all these years. > I will be on Gleevec 10 years this Oct. > > > > > > > . > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > > Lab results noted a slight increase in creatin, which I told was a > > > side effect with those on long-term Gleevec. I've been on it for > 10 > > > 1/2 years. I was given the option of switching to a new trial > > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > > wasn't mentioned. Can anyone give me a brief summary of Tasigna > vs. > > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > > but am wondering if I might be better off on a newer drug??? > Thanks > > > for your help. > > > > Gay Bratton > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 Sounds like our side effects are very similar. Thank you for taking the time to write. You've made me feel better. I'm going to try drinking lots of water and see if that will help the kidney issues. I have pain in my right hip joint at night. it seems to be better when I can exercise. I like to walk, but it's soooo.... hot here in San right now. Take care of yourself and keep in touch. Gay On Jun 17, 2010, at 4:34 PM, Armour wrote: > Hi Gay: It is great to see long term Gleevec users still on here > and doing good. > I did get GERD fromt the Gleevec. I have been on Nexium now for > quite awhile, and no problems. I do get some gastro problems, but > nothing to be concerned over. They come and go. I go for my > colonoscopy every 5 years, and everything is fine there too. I > still get the muscle cramps and joint problems. I have bad > Arthritis though, and that seems to be my issue right now. I also > have a overactive bladder, and when I drink all my water I am in the > bathroom all night. Thats okay, as long as my kidney functions are > doing good. > Take Care. I think you will be fine. > A. > > > > > Hi Gay: I remember when we both started on the Gleevec. You started > > just before me. I think we used to converse over the old CML at > > , and somehow we lost track as years went on with other things > > going on. You said your Creatnine was off. I always got my regular > > blood work, and all of a sudden my kidney functions were off. They > > even sent me to a Kidney Specialist. I was never a water drinker, > > and my nurse told me to start getting the water into my system to > > flush things out. I started to do that, and my numbers all came back > > to normal. I might have chronic kidney disease as I was told, but > > everytime I go see this doctor he tells me that my numbers are all > > where they should be and to come back in 6 months. I actually > > stopped seeing him, because with all my other doctors running blood > > work on me I can see if they go out of range again. > > Can I ask you if you get enough liquid in you. I have always been so > > bad with water etc. Now I make sure I drink it, even if I am up all > > night with the urinating. > > Just thought maybe you could try that before switching if its been > > working for you all these years. > > I will be on Gleevec 10 years this Oct. > > > > > > > > > > > . > > > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at > MDA. > > > > Lab results noted a slight increase in creatin, which I told > was a > > > > side effect with those on long-term Gleevec. I've been on it for > > 10 > > > > 1/2 years. I was given the option of switching to a new trial > > > > " nil..... " something (Novartis drug) or going to Sprycel. > Tasigna > > > > wasn't mentioned. Can anyone give me a brief summary of Tasigna > > vs. > > > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > > > but am wondering if I might be better off on a newer drug??? > > Thanks > > > > for your help. > > > > > > Gay Bratton > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 I am wondering the exact same thing? Should I stay on Gleevec or go onto the Tasigna, which supposedly has fewer side-effects. I have suffered like crazy with diarrhea 10+ times a day, and fatigue that is so awful--and just feeling " yucky " sometimes. What is the deal with switching over. I think my CML is under pretty good control, but not perfect--and my counts bounce up and down so I never feel really secure in my control of it. Vicki > > > > > > > . > > > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > > > Lab results noted a slight increase in creatin, which I told was a > > > > side effect with those on long-term Gleevec. I've been on it for > > 10 > > > > 1/2 years. I was given the option of switching to a new trial > > > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > > > wasn't mentioned. Can anyone give me a brief summary of Tasigna > > vs. > > > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > > > but am wondering if I might be better off on a newer drug??? > > Thanks > > > > for your help. > > > > > > Gay Bratton > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Hi VIcki: It depends on how your counts are, and are you in a cytogenetic remission. Then how bad are the side effects is another issue. Also, how long have you been on the Gleevec and what dose. Myself and others have been on Gleevec for 9 years and more. Gleevec has been doing its job for me, and I have mentioned that I live with the side effects as long as it keeps working. I have been on my 400 mg. since day one in Oct. of 2000.     I would not just switch to another drug, and risk it maybe not working for me at all.     Everyone is different in how they handle the way they feel, and their quality of life.     I just Thank God Everyday That I am still here living with CML since 1998.    You would have to discuss this with your Oncologist.     Hope that helps you a little bit.     Take Care     A. From: Vicki <vickistu@...> Subject: Re: [ ] Tasigna vs. Sprycel Date: Friday, June 18, 2010, 4:09 AM  I am wondering the exact same thing? Should I stay on Gleevec or go onto the Tasigna, which supposedly has fewer side-effects. I have suffered like crazy with diarrhea 10+ times a day, and fatigue that is so awful--and just feeling " yucky " sometimes. What is the deal with switching over. I think my CML is under pretty good control, but not perfect--and my counts bounce up and down so I never feel really secure in my control of it. Vicki > > > > > > > . > > > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at MDA. > > > > Lab results noted a slight increase in creatin, which I told was a > > > > side effect with those on long-term Gleevec. I've been on it for > > 10 > > > > 1/2 years. I was given the option of switching to a new trial > > > > " nil..... " something (Novartis drug) or going to Sprycel. Tasigna > > > > wasn't mentioned. Can anyone give me a brief summary of Tasigna > > vs. > > > > Sprycel side effects, etc. ? I am staying on Gleevec at present, > > > > but am wondering if I might be better off on a newer drug??? > > Thanks > > > > for your help. > > > > > > Gay Bratton > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Vicki, My diarrhea problems are not nearly as bad as yours. I have had it in the past, but not that bad, and now it only occurs every month or so and last for part of a day. I think if I were you, I'd definitely ask about switching. I was told that there is a a trial open for people with problems on Gleevec and that the medicine on it would be free until it was approved for new CMLers...How long have you been on Gleevec? Gay On Jun 18, 2010, at 3:09 AM, Vicki wrote: > I am wondering the exact same thing? Should I stay on Gleevec or go > onto the Tasigna, which supposedly has fewer side-effects. I have > suffered like crazy with diarrhea 10+ times a day, and fatigue that > is so awful--and just feeling " yucky " sometimes. What is the deal > with switching over. I think my CML is under pretty good control, > but not perfect--and my counts bounce up and down so I never feel > really secure in my control of it. > > Vicki > > > > > > > > > > > . > > > > > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at > MDA. > > > > > Lab results noted a slight increase in creatin, which I told > was a > > > > > side effect with those on long-term Gleevec. I've been on it > for > > > 10 > > > > > 1/2 years. I was given the option of switching to a new trial > > > > > " nil..... " something (Novartis drug) or going to Sprycel. > Tasigna > > > > > wasn't mentioned. Can anyone give me a brief summary of > Tasigna > > > vs. > > > > > Sprycel side effects, etc. ? I am staying on Gleevec at > present, > > > > > but am wondering if I might be better off on a newer drug??? > > > Thanks > > > > > for your help. > > > > > > > > Gay Bratton > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Hi Vicki, I had terrible terrible Diarrhea problems while on Gleevec and also on Sprycel. But Gleevec was worst. I losts 15 pounds then too. Not to mention the rash. I am on Tasigna and have none o those problems anymore. I feel just wonderful!!! I suggest you switch. Sharon Re: [ ] Tasigna vs. Sprycel Vicki, My diarrhea problems are not nearly as bad as yours. I have had it in the past, but not that bad, and now it only occurs every month or so and last for part of a day. I think if I were you, I'd definitely ask about switching. I was told that there is a a trial open for people with problems on Gleevec and that the medicine on it would be free until it was approved for new CMLers...How long have you been on Gleevec? Gay On Jun 18, 2010, at 3:09 AM, Vicki wrote: > I am wondering the exact same thing? Should I stay on Gleevec or go > onto the Tasigna, which supposedly has fewer side-effects. I have > suffered like crazy with diarrhea 10+ times a day, and fatigue that is > so awful--and just feeling " yucky " sometimes. What is the deal with > switching over. I think my CML is under pretty good control, but not > perfect--and my counts bounce up and down so I never feel really > secure in my control of it. > > Vicki > > > > > > > > > > > . > > > > > > > > > > Yesterday I had my yearly appointment with Dr. Kantarjian at > MDA. > > > > > Lab results noted a slight increase in creatin, which I told > was a > > > > > side effect with those on long-term Gleevec. I've been on it > for > > > 10 > > > > > 1/2 years. I was given the option of switching to a new trial > > > > > " nil..... " something (Novartis drug) or going to Sprycel. > Tasigna > > > > > wasn't mentioned. Can anyone give me a brief summary of > Tasigna > > > vs. > > > > > Sprycel side effects, etc. ? I am staying on Gleevec at > present, > > > > > but am wondering if I might be better off on a newer drug??? > > > Thanks > > > > > for your help. > > > > > > > > Gay Bratton > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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