Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Hi Dorothy, Thank you so much for your input. I appreciate any and all advice and information about this new drug and what is being said about it. We have a great forum here to discuss this, and what better people to talk about it than CML patients and their caregivers. I don't want people to think that going off of Gleevec is a normal thing and the decision was not taken lightly in any way. My Dr and I decided together, as a way to see if the side effects were indeed true side effects or if it could be something different. There was no way to know unless I got off of it and let time do it's thing. I am still being carefully monitored with all the labs. I have a very supportive husband and two young daughters and have increasingly had a difficult time managing my side effects throughout my nearly 4 years of treatment on Gleevec. The results of going off of Gleevec has been amazing to say the least. In less than a week, the side effects have stopped. My daughters even said, " Wow, we have our Mom BACK! " They can't stop giving me hugs and can't stop smiling! I cannot tell you how that feels! Thanks! Lynn PCRU > > > Hello my CML friends and caregivers, > > > > Is there anyone active on this group that is taking the newly > > approved, > > Tasigna(AMN)drug? > > > > I've been on Gleevec for almost 4 years now, and although I look great > > on paper,(labs, PCR's, etc.) Gleevec has really kicked my butt with > > side effects and things really came to a head last week. > > > > I am currently on a Dr. approved break off of Gleevec, and I feel > > amazing now. (been off less than a week) and want to know if anyone > > can > > give me any input as to this new drug and how you are doing? I will be > > either going back onto Gleevec or possibly starting Tasigna. Will know > > more next week at my next Dr. visit. > > > > Any all advice would be much appreciated, > > > > Lynn > > Dx'd 12/03 > > PCRU > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Lynn-- My husband went off Gleevec for 3 weeks due to liver intolerance--he was off for 3 weeks in order for his liver to recover. Once it recovered..he went back on it, liver counts shot back up again, so ultimately he was taken off Gleevec and switched to Sprycel. But, when he was off for 3 weeks---WOW. He said he felt so " normal " ...tons of energy, worked in the yard and in his garage almost every day, played and played with our 1 year old son! He was fantasizing about being able to be on Gleevec for a couple weeks, then off for a week, etc. He kept saying that would make it so manageable. But, I know all of the leading CML experts highly advise NOT doing that - but wouldnt it be nice? I guess even nicer would be to find a CURE! Let's keep our prayers on that goal. I wish you much success on your CML journey...and hopefully whatever you decide, your side effects will minimize over time. I, too, have heard great things thus far about Tasigna and the side effects (lack of). And like I said--my husband is doing great on Sprycel--but--you are right about the pleural effusion...that is a scary side effect to watch out for... Good luck-- @...: no_reply@...: Wed, 7 Nov 2007 21:46:03 +0000Subject: Re: [ ] Tasigna-Dorothy Hi Dorothy, Thank you so much for your input. I appreciate any and all advice and information about this new drug and what is being said about it. We have a great forum here to discuss this, and what better people to talk about it than CML patients and their caregivers. I don't want people to think that going off of Gleevec is a normal thing and the decision was not taken lightly in any way. My Dr and I decided together, as a way to see if the side effects were indeed true side effects or if it could be something different. There was no way to know unless I got off of it and let time do it's thing. I am still being carefully monitored with all the labs.I have a very supportive husband and two young daughters and have increasingly had a difficult time managing my side effects throughout my nearly 4 years of treatment on Gleevec. The results of going off of Gleevec has been amazing to say the least. In less than a week, the side effects have stopped. My daughters even said, " Wow, we have our Mom BACK! " They can't stop giving me hugs and can't stop smiling! I cannot tell you how that feels!Thanks! LynnPCRU> > > Hello my CML friends and caregivers,> >> > Is there anyone active on this group that is taking the newly > > approved,> > Tasigna(AMN)drug?> >> > I've been on Gleevec for almost 4 years now, and although I look great> > on paper,(labs, PCR's, etc.) Gleevec has really kicked my butt with> > side effects and things really came to a head last week.> >> > I am currently on a Dr. approved break off of Gleevec, and I feel> > amazing now. (been off less than a week) and want to know if anyone > > can> > give me any input as to this new drug and how you are doing? I will be> > either going back onto Gleevec or possibly starting Tasigna. Will know> > more next week at my next Dr. visit.> >> > Any all advice would be much appreciated,> >> > Lynn> > Dx'd 12/03> > PCRU> >> >> > > >> > > [Non-text portions of this message have been removed]> _________________________________________________________________ Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! http://onecare.live.com/standard/en-us/purchase/trial.aspx?s_cid=wl_hotmailnews Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Hi Lynn, Lynn said: I don't want people to think that going off of Gleevec is a normal thing and the decision was not taken lightly in any way. My Dr and I decided together, as a way to see if the side effects were indeed true side effects or if it could be something different. There was no way to know unless I got off of it and let time do it's thing. I am still being carefully monitored with all the labs. I have only been on Glivec for 29 days and had to cease it for 10 days due to severe migraines. It worked wonders in that time, with all my bloods back to normal, but I couldn't cope with the daily migraines. After a week off I felt like " normal " me again! Prior to recommencing, I have been taking a small dose of anti depressant (not keen on this), but my haem/t said in small doses has been found to prevent/reduce migraines. Well I am back on Glivec 2nd daily for 2 weeks, then daily if all goes well. So far had 2 lots of Glivec and no headaches and been able to go back to work and feel great! My eyes are still very puffy, but that I can live with. Living with CML is certainly a journey and learning to negotiate the obstacles along the way is challenging! Regards, From: [mailto: ] On Behalf Of snickersunny Sent: Thursday, 8 November 2007 8:46 AM Subject: Re: [ ] Tasigna-Dorothy Hi Dorothy, Thank you so much for your input. I appreciate any and all advice and information about this new drug and what is being said about it. We have a great forum here to discuss this, and what better people to talk about it than CML patients and their caregivers. I don't want people to think that going off of Gleevec is a normal thing and the decision was not taken lightly in any way. My Dr and I decided together, as a way to see if the side effects were indeed true side effects or if it could be something different. There was no way to know unless I got off of it and let time do it's thing. I am still being carefully monitored with all the labs. I have a very supportive husband and two young daughters and have increasingly had a difficult time managing my side effects throughout my nearly 4 years of treatment on Gleevec. The results of going off of Gleevec has been amazing to say the least. In less than a week, the side effects have stopped. My daughters even said, " Wow, we have our Mom BACK! " They can't stop giving me hugs and can't stop smiling! I cannot tell you how that feels! Thanks! Lynn PCRU .._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 What does the black box on Tasigna mean? Known negative effects, or effects unknown? Or ... ? @...: weez_555@...: Thu, 8 Nov 2007 01:53:46 +0000Subject: RE: [ ] Tasigna-Dorothy Lynn--My husband went off Gleevec for 3 weeks due to liver intolerance--he was off for 3 weeks in order for his liver to recover. Once it recovered..he went back on it, liver counts shot back up again, so ultimately he was taken off Gleevec and switched to Sprycel. But, when he was off for 3 weeks---WOW. He said he felt so " normal " ...tons of energy, worked in the yard and in his garage almost every day, played and played with our 1 year old son! He was fantasizing about being able to be on Gleevec for a couple weeks, then off for a week, etc. He kept saying that would make it so manageable. But, I know all of the leading CML experts highly advise NOT doing that - but wouldnt it be nice?I guess even nicer would be to find a CURE! Let's keep our prayers on that goal.I wish you much success on your CML journey...and hopefully whatever you decide, your side effects will minimize over time. I, too, have heard great things thus far about Tasigna and the side effects (lack of). And like I said--my husband is doing great on Sprycel--but--you are right about the pleural effusion...that is a scary side effect to watch out for...Good luck--To: @...: no_reply@...: Wed, 7 Nov 2007 21:46:03 +0000Subject: Re: [ ] Tasigna-DorothyHi Dorothy, Thank you so much for your input. I appreciate any and all advice and information about this new drug and what is being said about it. We have a great forum here to discuss this, and what better people to talk about it than CML patients and their caregivers. I don't want people to think that going off of Gleevec is a normal thing and the decision was not taken lightly in any way. My Dr and I decided together, as a way to see if the side effects were indeed true side effects or if it could be something different. There was no way to know unless I got off of it and let time do it's thing. I am still being carefully monitored with all the labs.I have a very supportive husband and two young daughters and have increasingly had a difficult time managing my side effects throughout my nearly 4 years of treatment on Gleevec. The results of going off of Gleevec has been amazing to say the least. In less than a week, the side effects have stopped. My daughters even said, " Wow, we have our Mom BACK! " They can't stop giving me hugs and can't stop smiling! I cannot tell you how that feels!Thanks! LynnPCRU> > > Hello my CML friends and caregivers,> >> > Is there anyone active on this group that is taking the newly > > approved,> > Tasigna(AMN)drug?> >> > I've been on Gleevec for almost 4 years now, and although I look great> > on paper,(labs, PCR's, etc.) Gleevec has really kicked my butt with> > side effects and things really came to a head last week.> >> > I am currently on a Dr. approved break off of Gleevec, and I feel> > amazing now. (been off less than a week) and want to know if anyone > > can> > give me any input as to this new drug and how you are doing? I will be> > either going back onto Gleevec or possibly starting Tasigna. Will know> > more next week at my next Dr. visit.> >> > Any all advice would be much appreciated,> >> > Lynn> > Dx'd 12/03> > PCRU> >> >> > > >> > > [Non-text portions of this message have been removed]> __________________________________________________________Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare!http://onecare.live.com/standard/en-us/purchase/trial.aspx?s_cid=wl_hotm\ ailnews Quote Link to comment Share on other sites More sharing options...
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