Guest guest Posted July 4, 2010 Report Share Posted July 4, 2010 Hi Ana, You need to go to googl, then if you don't have a google a/c, you need to join, then go to Tasigna-supportgroup-cml (put in search on googlegroup page), then click on join group. Regards, From: [mailto: ] On Behalf Of Ana Sent: Saturday, 3 July 2010 2:42 AM Subject: Re: [ ] Tasigna can you give the web site for tasigna support group? From: Malseed Sent: Friday, July 02, 2010 4:36 PM <mailto:%40> Subject: RE: [ ] Tasigna Thanks . Regards, From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of nchando@... <mailto:nchando%40aol.com> Sent: Thursday, 1 July 2010 11:24 PM <mailto:%40> Subject: [ ] Tasigna There is a discussion group just for Tasigna at: _tasigna-support-group-cmlgooglegroups <mailto:_tasigna-support-group-cml%40googl> <mailto:_tasigna-support-group-cml%40googl> _ (mailto:tasigna-support-group-cmlgooglegroups <mailto:tasigna-support-group-cml%40googl> <mailto:tasigna-support-group-cml%40googl> ) I've been on Tasigna for two years and find it helpful to belong to that group as well as the other cml groups. If you have a question specific for Tasigna users you'll find a quick answer there. in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 I just started Tasigna on Monday and have had no side effects at all. Had a ton of side effects on Gleevac. If you have any questions please ask! Sent from my Verizon Wireless BlackBerry [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 On Gleevec I have very bad bone and joint pain a little bit of nausea if I don't stick to my eating and sleeping schedule and I am tired all of the time. My quality of life is not fun.... I am assuming you have relatively the same symptoms? And you have zero side effects on Tasigna? That sounds amazing! Romero Vice President, Sales & Marketing Fusion Contact Centers, LLC. Direct- (480) 889.3800 Mobile- (801) 918.1118 Email- ryan.romero@... <mailto:ryan.romero@...> Website-www.fusioncontactcenters.com From: [mailto: ] On Behalf Of rnmichelle80@... Sent: Thursday, August 12, 2010 2:54 PM Subject: Re: [ ] Tasigna I just started Tasigna on Monday and have had no side effects at all. Had a ton of side effects on Gleevac. If you have any questions please ask! Sent from my Verizon Wireless BlackBerry [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 good good good!!! that is how I was and still after 2.5 years have no side effects. Gleevec was terrible to me!!! good luck Keep in touch. sharon _____ From: [mailto: ] On Behalf Of rnmichelle80@... Sent: Thursday, August 12, 2010 2:54 PM Subject: Re: [ ] Tasigna I just started Tasigna on Monday and have had no side effects at all. Had a ton of side effects on Gleevac. If you have any questions please ask! Sent from my Verizon Wireless BlackBerry [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 yes I agree with your doctor. I had terrible side effects on Gleevec-sick all the time, rash, stomach problems, could not be far from a bathroom, lost eyelashes and eyebrows. On Tasigna I have none!!!!!!!!!!!!!!!!!!!!!! sooooooooo much happier!!!!! Sharon _____ From: [mailto: ] On Behalf Of Romero, Sent: Thursday, August 12, 2010 2:52 PM Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Hi , This should be your call. As long as you are getting a god response and you have a good QOL there is no point in switching drugs. If your QOL is suffering, then certainly give it a try. Zavie Zavie (age 72) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 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 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction Apr/10 e-mail: <mailto:zmiller@...> zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem From: [mailto: ] On Behalf Of Romero, Sent: August-12-10 5:52 PM Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Thanks Zavie! My QOL is suffering so that's why I am considering... I think I am going to wait to get my BCR ABLE back in a week. If it comes back PCRU then I may give it a shot. Thanks buddy! From: [mailto: ] On Behalf Of Zavie Sent: Thursday, August 12, 2010 3:28 PM Subject: RE: [ ] Tasigna Hi , This should be your call. As long as you are getting a god response and you have a good QOL there is no point in switching drugs. If your QOL is suffering, then certainly give it a try. Zavie Zavie (age 72) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 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 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction Apr/10 e-mail: <mailto:zmiller@... <mailto:zmiller%40sympatico.ca> > zmiller@... <mailto:zmiller%40sympatico.ca> Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Romero, Sent: August-12-10 5:52 PM <mailto:%40> Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 I have more headaches and I'm dizzier and queasier on Tasigna than on Gleevec on Sprycel. I also get the fatigue but nowhere near as bad as on Gleevec. I used to have terrible depression on Gleevec but that has gone away. I also don't get rashes or any of that kind of thing. On the whole, much better! Oh, also -- I'm doing much better therapeuticallywise. On Thu, Aug 12, 2010 at 2:51 PM, Romero, <ryan.romero@...>wrote: > > > Hi everyone! Hope you all are doing well... My doctors are telling me > they think I should switch to Tasigna because there are less side > effects. Does anyone want to share their experiences with it? Any info > would be great! Thanks > > Chemo-Sabi > > Romero > > 28 year old male in Santa , California > > DX-10.22.09 > > Hydroxeuya-10.22.09-10.29.09 > > Gleevec 400MG-10.29.09-11.06.09 > > Gleevec Reduction 200MG-11.06.09-01.04.10 > > Gleevec increase 300MG-01.05.10-01.13.10 > > BCR-ABL-126% or 0.2637 > > 0.6 Log Reduction 02.05.10 > > Gleevec increase 400MG 01.14.10-Present > > 1.8 Log Reduction 06.12.10 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 I am so glad I switched. I have lost 20 lbs. No side effects. I feel like I am alive again. Tammy _____ From: Romero, [mailto:ryan.romero@...] Sent: Thursday, August 12, 2010 5:52 PM Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Hi Guys, I too am switching to Tasigna at the end of the month. Was on Gleevec and switched because of liver problems and I am now on 100mg of Sprycel for the last 7 months but for some reason I have had terrible feelings like the flu for the past 6 weeks so my onc wants me to switch. She says I can go back to Sprycel if I don't like Tasigna. Makes me nervous but I feel so terrible. Eva From: Romero, Sent: Thursday, August 12, 2010 5:51 PM Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 On Gleevec I had to have a transfusion every month. I was switched to Tasigna and the recommended dose was four capsules a day. I now am on two capsules a day and all my counts a wonderful. There is no sign of any cancer. ________________________________ From: " Romero, " <ryan.romero@...> Sent: Thursday, August 12, 2010 17:56:40 Subject: RE: [ ] Tasigna  On Gleevec I have very bad bone and joint pain a little bit of nausea if I don't stick to my eating and sleeping schedule and I am tired all of the time. My quality of life is not fun.... I am assuming you have relatively the same symptoms? And you have zero side effects on Tasigna? That sounds amazing! Romero Vice President, Sales & Marketing Fusion Contact Centers, LLC. Direct- (480) 889.3800 Mobile- (801) 918.1118 Email- ryan.romero@... <mailto:ryan.romero@...> Website-www.fusioncontactcenters.com From: [mailto: ] On Behalf Of rnmichelle80@... Sent: Thursday, August 12, 2010 2:54 PM Subject: Re: [ ] Tasigna I just started Tasigna on Monday and have had no side effects at all. Had a ton of side effects on Gleevac. If you have any questions please ask! Sent from my Verizon Wireless BlackBerry [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 wow I wish I could go to two capsules a day. I take three. I am so tempted to try 2 but I am doins so well on three I hate to rock the boat. I started at two and because I did not reach PCRU right way they switched me to 3. I am happy for y ou Sharon _____ From: [mailto: ] On Behalf Of Sent: Thursday, August 12, 2010 5:40 PM Subject: Re: [ ] Tasigna On Gleevec I had to have a transfusion every month. I was switched to Tasigna and the recommended dose was four capsules a day. I now am on two capsules a day and all my counts a wonderful. There is no sign of any cancer. ________________________________ From: " Romero, " <ryan.romero@... <mailto:ryan.romero%40callfusion.com> > <mailto:%40> Sent: Thursday, August 12, 2010 17:56:40 Subject: RE: [ ] Tasigna On Gleevec I have very bad bone and joint pain a little bit of nausea if I don't stick to my eating and sleeping schedule and I am tired all of the time. My quality of life is not fun.... I am assuming you have relatively the same symptoms? And you have zero side effects on Tasigna? That sounds amazing! Romero Vice President, Sales & Marketing Fusion Contact Centers, LLC. Direct- (480) 889.3800 Mobile- (801) 918.1118 Email- ryan.romero@... <mailto:ryan.romero%40callfusion.com> <mailto:ryan.romero@... <mailto:ryan.romero%40callfusion.com> > Website-www.fusioncontactcenters.com From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of rnmichelle80@... <mailto:rnmichelle80%40> Sent: Thursday, August 12, 2010 2:54 PM <mailto:%40> Subject: Re: [ ] Tasigna I just started Tasigna on Monday and have had no side effects at all. Had a ton of side effects on Gleevac. If you have any questions please ask! Sent from my Verizon Wireless BlackBerry [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 sprycel treated me that way too. I was always sick, cold after cold and coughing a lot and then got P.E. so they stopped me after three years. Went to Tasigna and have absolutely no complaints. Sharon _____ From: [mailto: ] On Behalf Of Eva Brown Sent: Thursday, August 12, 2010 5:37 PM Subject: Re: [ ] Tasigna Hi Guys, I too am switching to Tasigna at the end of the month. Was on Gleevec and switched because of liver problems and I am now on 100mg of Sprycel for the last 7 months but for some reason I have had terrible feelings like the flu for the past 6 weeks so my onc wants me to switch. She says I can go back to Sprycel if I don't like Tasigna. Makes me nervous but I feel so terrible. Eva From: Romero, Sent: Thursday, August 12, 2010 5:51 PM <mailto:%40> Cc: Carlyle, Jenifer Subject: [ ] Tasigna Hi everyone! Hope you all are doing well... My doctors are telling me they think I should switch to Tasigna because there are less side effects. Does anyone want to share their experiences with it? Any info would be great! Thanks Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 HI Â Can I ask why you switched? Â From: Rosen Lum <rrosenlum@...> Subject: Re: [ ] Tasigna Date: Thursday, August 12, 2010, 4:04 PM I have more headaches and I'm dizzier and queasier on Tasigna than on Gleevec on Sprycel. I also get the fatigue but nowhere near as bad as on Gleevec. I used to have terrible depression on Gleevec but that has gone away. I also don't get rashes or any of that kind of thing. On the whole, much better! Oh, also -- I'm doing much better therapeuticallywise. On Thu, Aug 12, 2010 at 2:51 PM, Romero, <ryan.romero@...>wrote: > > > Hi everyone! Hope you all are doing well... My doctors are telling me > they think I should switch to Tasigna because there are less side > effects. Does anyone want to share their experiences with it? Any info > would be great! Thanks > > Chemo-Sabi > > Romero > > 28 year old male in Santa , California > > DX-10.22.09 > > Hydroxeuya-10.22.09-10.29.09 > > Gleevec 400MG-10.29.09-11.06.09 > > Gleevec Reduction 200MG-11.06.09-01.04.10 > > Gleevec increase 300MG-01.05.10-01.13.10 > > BCR-ABL-126% or 0.2637 > > 0.6 Log Reduction 02.05.10 > > Gleevec increase 400MG 01.14.10-Present > > 1.8 Log Reduction 06.12.10 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Crummy quality of life! I was sleeping my life away -- 12 hours at night and another 3 or 4 during the day. When I was awake I didn't feel like I was " all there. " I also couldn't seem to overcome a debilitating depression. My doc told me that that was too bad, but that I should be grateful that there is a Gleevec, not to rock the boat, and so on. I had to switch medical plans and started seeing a new doc who thought staying on a medication that brought with it such a poor QOL was silly given two good alternatives, Sprycel and Tasigna. He is a pretty respected fellow, and I felt confident in his ability. Sprycel was a bit better and Tasigna was far better still. I snooze a heck of a lot more than I wish I had to, and have a couple strange side effects, but when I'm awake I'm pretty clear-minded and do not have the depression, which was awful. Oh, and I'm also at zero PCR, which I never achieved with Gleevec! I am applying to a master's program, which is something I never could have dreamed of doing on Gleevec. That's more information than you probably wanted ... did I answer your question? Best, On Fri, Aug 13, 2010 at 1:59 PM, andrea silveira <formiga101@...>wrote: > > > HI > > Can I ask why you switched? > > > > > > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>> > Subject: Re: [ ] Tasigna > <%40> > Date: Thursday, August 12, 2010, 4:04 PM > > I have more headaches and I'm dizzier and queasier on Tasigna than on > Gleevec on Sprycel. I also get the fatigue but nowhere near as bad as on > Gleevec. I used to have terrible depression on Gleevec but that has gone > away. I also don't get rashes or any of that kind of thing. On the whole, > much better! Oh, also -- I'm doing much better therapeuticallywise. > > > > On Thu, Aug 12, 2010 at 2:51 PM, Romero, <ryan.romero@...<ryan.romero%40callfusion.com> > >wrote: > > > > > > > Hi everyone! Hope you all are doing well... My doctors are telling me > > they think I should switch to Tasigna because there are less side > > effects. Does anyone want to share their experiences with it? Any info > > would be great! Thanks > > > > Chemo-Sabi > > > > Romero > > > > 28 year old male in Santa , California > > > > DX-10.22.09 > > > > Hydroxeuya-10.22.09-10.29.09 > > > > Gleevec 400MG-10.29.09-11.06.09 > > > > Gleevec Reduction 200MG-11.06.09-01.04.10 > > > > Gleevec increase 300MG-01.05.10-01.13.10 > > > > BCR-ABL-126% or 0.2637 > > > > 0.6 Log Reduction 02.05.10 > > > > Gleevec increase 400MG 01.14.10-Present > > > > 1.8 Log Reduction 06.12.10 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Yes , and so exicited to hear that you are feeling better. > > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>> > Subject: Re: [ ] Tasigna > <%40> > Date: Thursday, August 12, 2010, 4:04 PM > > I have more headaches and I'm dizzier and queasier on Tasigna than on > Gleevec on Sprycel. I also get the fatigue but nowhere near as bad as on > Gleevec. I used to have terrible depression on Gleevec but that has gone > away. I also don't get rashes or any of that kind of thing. On the whole, > much better! Oh, also -- I'm doing much better therapeuticallywise. > > > > On Thu, Aug 12, 2010 at 2:51 PM, Romero, <ryan.romero@...<ryan.romero%40callfusion.com> > >wrote: > > > > > > > Hi everyone! Hope you all are doing well... My doctors are telling me > > they think I should switch to Tasigna because there are less side > > effects. Does anyone want to share their experiences with it? Any info > > would be great! Thanks > > > > Chemo-Sabi > > > > Romero > > > > 28 year old male in Santa , California > > > > DX-10.22.09 > > > > Hydroxeuya-10.22.09-10.29.09 > > > > Gleevec 400MG-10.29.09-11.06.09 > > > > Gleevec Reduction 200MG-11.06.09-01.04.10 > > > > Gleevec increase 300MG-01.05.10-01.13.10 > > > > BCR-ABL-126% or 0.2637 > > > > 0.6 Log Reduction 02.05.10 > > > > Gleevec increase 400MG 01.14.10-Present > > > > 1.8 Log Reduction 06.12.10 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Hi All, I think I have been on Tasigna for about 2 months now. Switched from Gleevec after 3 years because of QOL issues. I f I didn't read such good stuff from you all about Tasigna I would probably be a little more disolusioned. I guess I am grateful that I don't have the puffy eyes and have managed to lose some weight but I still don't feel my QOL is back to 'normal'. I have developed Plantaris Fascitis (spell??) in my right foot which I am convinced is from the Tasigna, I never had it before and was an avid runner before Dx in 2007. I seem to get alot of aches and pains and still get exhausted easily. I am also having some hair loss, not alot yet but from having chemo when first Dx my hair is not that thick and I certainly can't afford to lose any!!! Last but not least I am ITCHY!!! mostly my head, no rashes though. So Tasigna isn't the new lease of life I was hoping for, my levels have gone down (a huge plus!!) but all in all I feel quite blessed to have been given such a manageable cancer Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 I too went from Gleevec to Tasigna, but ultimately found that Sprycel was best for me. It is not without side effects and for fatigue is the worst, however of all the ones that I have tried it has been best for me. Tasigna for me was the best but it had my blood pressure so high (and I never had BP issues) that I had to get off it or die of a stroke. I think that there are ebbs and flows on each type of treatment and we all have to work at beating the side effects. Hopefully you will get some posts tonight that may help you deal with your side effects. Peace! With the warmest regards, Matt CML of Florida Dx January of 2005 Gleevec March of 2005 Tasigna November of 2007 Sprycel December of 2009 Number 1078 in the Esteemed Zavie Zero Club In a message dated 8/16/2010 6:49:10 P.M. Eastern Daylight Time, peggybecker@... writes: Hi, I'm 46 and was diagnosed 2 years ago last month. I had so many terrible side effects from Gleevec, I could barely function. My big task of the day was a shower and getting back into pajama's. The only time I left the house was for Onc appointment or pharmacy. A year ago I was put on Tasigna and I do have a better quality of life, but yet still a number of side effects. The big thing that I noticed has changed is the degree of tiredness, although still tired most times I can work through it. I get nauseaness,migraines,dizzy spells,blurred vision,diarrhea and upset stomach, but it's still better then Gleevec. I go through periods of itchiness, but tolerable. Good Luck to everyone, and I'm afraid to try spyrel, so I'm staying where I'm at. I live one day at a time and really can't make many plans,because I never know how I'm going to feel. Take care, Peggy B Connected by MOTOBLURâ„¢ on T-Mobile -----Original message----- From: teamjolie <_teamjolie@..._ (mailto:teamjolie@...) > _ _ (mailto: ) Sent: Mon, Aug 16, 2010 18:20:35 EDT Subject: [ ] Re: Tasigna Hi Everyone, I'm a 26 year old, well 27 tomorrow, female who was diagnosed with CML 3 years ago this October. Since then, I was on Gleevec for 18 months and then Sprycel for a little over a year now. Gleevec provided me with many side effects and did not help me achieve the stages of remission we were hoping for. When switching to Sprycel, the headaches, tiredness, puffy eyes, etc. all went away but then I did have weight gain and a couple months after starting it, came the rash and itchiness. I'm itching like crazy! It comes and goes but really the only way I can get it to fully go away is to take predizone for a week.However, the rash and itchiness comes back a few days later. It comes in blotches but then if I let it go, one day I will wake up and it will have consumed my entire body. Benadryl and other medications do not help. My Dr's are now talking about switching me over to Tasigna but am hesitant. I understand I can't live on predizone the rest of my life but why am I going to switch when I'll have the same side effects as I do now? Was anyone on sprycel and experienced a rash before switching to tasigna? Did you continue to have the rash? Please help! Any input you can provide would be helpful! Thank you! > > Hi All, > I think I have been on Tasigna for about 2 months now. Switched from Gleevec after 3 years because of QOL issues. > > I f I did [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Hi Everyone, I'm a 26 year old, well 27 tomorrow, female who was diagnosed with CML 3 years ago this October. Since then, I was on Gleevec for 18 months and then Sprycel for a little over a year now. Gleevec provided me with many side effects and did not help me achieve the stages of remission we were hoping for. When switching to Sprycel, the headaches, tiredness, puffy eyes, etc. all went away but then I did have weight gain and a couple months after starting it, came the rash and itchiness. I'm itching like crazy! It comes and goes but really the only way I can get it to fully go away is to take predizone for a week.However, the rash and itchiness comes back a few days later. It comes in blotches but then if I let it go, one day I will wake up and it will have consumed my entire body. Benadryl and other medications do not help. My Dr's are now talking about switching me over to Tasigna but am hesitant. I understand I can't live on predizone the rest of my life but why am I going to switch when I'll have the same side effects as I do now? Was anyone on sprycel and experienced a rash before switching to tasigna? Did you continue to have the rash? Please help! Any input you can provide would be helpful! Thank you! > > Hi All, > I think I have been on Tasigna for about 2 months now. Switched from Gleevec after 3 years because of QOL issues. > > I f I didn't read such good stuff from you all about Tasigna I would probably be a little more disolusioned. I guess I am grateful that I don't have the puffy eyes and have managed to lose some weight but I still don't feel my QOL is back to 'normal'. I have developed Plantaris Fascitis (spell??) in my right foot which I am convinced is from the Tasigna, I never had it before and was an avid runner before Dx in 2007. I seem to get alot of aches and pains and still get exhausted easily. I am also having some hair loss, not alot yet but from having chemo when first Dx my hair is not that thick and I certainly can't afford to lose any!!! Last but not least I am ITCHY!!! mostly my head, no rashes though. > > So Tasigna isn't the new lease of life I was hoping for, my levels have gone down (a huge plus!!) but all in all I feel quite blessed to have been given such a manageable cancer > > Regards > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Hi, I'm 46 and was diagnosed 2 years ago last month. I had so many terrible side effects from Gleevec, I could barely function. My big task of the day was a shower and getting back into pajama's. The only time I left the house was for Onc appointment or pharmacy. A year ago I was put on Tasigna and I do have a better quality of life, but yet still a number of side effects. The big thing that I noticed has changed is the degree of tiredness, although still tired most times I can work through it. I get nauseaness,migraines,dizzy spells,blurred vision,diarrhea and upset stomach, but it's still better then Gleevec. I go through periods of itchiness, but tolerable. Good Luck to everyone, and I'm afraid to try spyrel, so I'm staying where I'm at. I live one day at a time and really can't make many plans,because I never know how I'm going to feel. Take care, Peggy B Connected by MOTOBLURâ„¢ on T-Mobile [ ] Re: Tasigna Hi Everyone, I'm a 26 year old, well 27 tomorrow, female who was diagnosed with CML 3 years ago this October. Since then, I was on Gleevec for 18 months and then Sprycel for a little over a year now. Gleevec provided me with many side effects and did not help me achieve the stages of remission we were hoping for. When switching to Sprycel, the headaches, tiredness, puffy eyes, etc. all went away but then I did have weight gain and a couple months after starting it, came the rash and itchiness. I'm itching like crazy! It comes and goes but really the only way I can get it to fully go away is to take predizone for a week.However, the rash and itchiness comes back a few days later. It comes in blotches but then if I let it go, one day I will wake up and it will have consumed my entire body. Benadryl and other medications do not help. My Dr's are now talking about switching me over to Tasigna but am hesitant. I understand I can't live on predizone the rest of my life but why am I going to switch when I'll have the same side effects as I do now? Was anyone on sprycel and experienced a rash before switching to tasigna? Did you continue to have the rash? Please help! Any input you can provide would be helpful! Thank you! > > Hi All, > I think I have been on Tasigna for about 2 months now. Switched from Gleevec after 3 years because of QOL issues. > > I f I did Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 Thats great that your doing so well. I have never been on Tasigna, but its when we post everything we are going through be it good or bad that it helps others to deal with their ups and downs and questions. Sounds like your very close to PCRU, but at this point I would be so happy for where you have gotten. I have always been on Gleevec, and it took me 3 years to get to PCRU. I hope you continue to have a lot of good days now that your dose has been cut back. From: donnaberry99 <no_reply > Subject: [ ] Tasigna Date: Saturday, October 2, 2010, 10:16 PM  Hey everyone, I went back to my Oncologist last Friday following my latest phenomenal PCR results, after 3 mos on Tasigna I had dropped almost a whole log bringing me to almost PCRU (being 'almost' PCRU is kind of like being 'almost' pregnant though I was so hoping for the big ZERO). I went along to my appointment expecting a big fight on my hands I was having such awful side effects from the Tasigna including the dreadful hair loss that I had decided I just had to reduce the dosage. (downunder) takes 400mg Tasigna at night every night and 200mg in the am every other day so I was going to suggest this same drop (I was on 400mg 2 x day). I was shocked when the Onc said he wanted me to just be on 400mg once a day, that means only one bout of fasting a day yay!!!I am having my PCR checked in 6 weeks instead of the usual 12 just to check the lower dosage is keeping me in check. The reason I am posting this is I thought it may be useful to know that this is an option. It never made sense to me that a 140lb person could be on the same dosage as a 200lb one??? After 3 mos of Tasignamy hair was falling out and I had no hair growing anywhere (legs etc). After the morning dose I was having to go to bed as I was so Nauseas and felt generally unwell. I have been on the lower dose for one week now and already feel so much better. In the end I was feeling as bad as I did when I was on intravenous chemo (the real deal stuff). Hope this may help some of you Regards Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 Wow I wish I could go on 400. I've been on 600 for over 2 years. I too lose my hair but new comes in but I hate it! I lost all hair on my legs on gleevec. 6 years ago and under my arms. Not a bad thing! Maybe ill ask again. I've been told that when u cut the dossage and u fall out of pcru you are putting yoursef in danger of it not working again. I will see what they say. I have no other side effects at all. I wonder if weight has anything to do with dossage? I weigh 135 and I am 5ft 2 Sharon Sent via BlackBerry by AT & T [ ] Tasigna Hey everyone, I went back to my Oncologist last Friday following my latest phenomenal PCR results, after 3 mos on Tasigna I had dropped almost a whole log bringing me to almost PCRU (being 'almost' PCRU is kind of like being 'almost' pregnant though I was so hoping for the big ZERO). I went along to my appointment expecting a big fight on my hands I was having such awful side effects from the Tasigna including the dreadful hair loss that I had decided I just had to reduce the dosage. (downunder) takes 400mg Tasigna at night every night and 200mg in the am every other day so I was going to suggest this same drop (I was on 400mg 2 x day). I was shocked when the Onc said he wanted me to just be on 400mg once a day, that means only one bout of fasting a day yay!!!I am having my PCR checked in 6 weeks instead of the usual 12 just to check the lower dosage is keeping me in check. The reason I am posting this is I thought it may be useful to know that this is an option. It never made sense to me that a 140lb person could be on the same dosage as a 200lb one??? After 3 mos of Tasignamy hair was falling out and I had no hair growing anywhere (legs etc). After the morning dose I was having to go to bed as I was so Nauseas and felt generally unwell. I have been on the lower dose for one week now and already feel so much better. In the end I was feeling as bad as I did when I was on intravenous chemo (the real deal stuff). Hope this may help some of you Regards Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 Sharon I was surprised that he suggested the lower dosage, me having not even reached PCRU yet?? > > Wow I wish I could go on 400. I've been on 600 for over 2 years. I too lose my hair but new comes in but I hate it! I lost all hair on my legs on gleevec. 6 years ago and under my arms. Not a bad thing! > Maybe ill ask again. I've been told that when u cut the dossage and u fall out of pcru you are putting yoursef in danger of it not working again. I will see what they say. I have no other side effects at all. I wonder if weight has anything to do with dossage? I weigh 135 and I am 5ft 2 > Sharon > Sent via BlackBerry by AT & T > > [ ] Tasigna > > Hey everyone, > I went back to my Oncologist last Friday following my latest phenomenal PCR results, after 3 mos on Tasigna I had dropped almost a whole log bringing me to almost PCRU (being 'almost' PCRU is kind of like being 'almost' pregnant though I was so hoping for the big ZERO). I went along to my appointment expecting a big fight on my hands I was having such awful side effects from the Tasigna including the dreadful hair loss that I had decided I just had to reduce the dosage. (downunder) takes 400mg Tasigna at night every night and 200mg in the am every other day so I was going to suggest this same drop (I was on 400mg 2 x day). I was shocked when the Onc said he wanted me to just be on 400mg once a day, that means only one bout of fasting a day yay!!!I am having my PCR checked in 6 weeks instead of the usual 12 just to check the lower dosage is keeping me in check. > The reason I am posting this is I thought it may be useful to know that this is an option. It never made sense to me that a 140lb person could be on the same dosage as a 200lb one??? > After 3 mos of Tasignamy hair was falling out and I had no hair growing anywhere (legs etc). After the morning dose I was having to go to bed as I was so Nauseas and felt generally unwell. I have been on the lower dose for one week now and already feel so much better. In the end I was feeling as bad as I did when I was on intravenous chemo (the real deal stuff). > Hope this may help some of you > Regards Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 , Thanks a bunch! I had got to the stage on that full dosage that I wondered how I could go on, melodramatic I know but quality of life is so important Donna > > > From: donnaberry99 <no_reply > > Subject: [ ] Tasigna > > Date: Saturday, October 2, 2010, 10:16 PM > > >  > > > > Hey everyone, > I went back to my Oncologist last Friday following my latest phenomenal PCR results, after 3 mos on Tasigna I had dropped almost a whole log bringing me to almost PCRU (being 'almost' PCRU is kind of like being 'almost' pregnant though I was so hoping for the big ZERO). I went along to my appointment expecting a big fight on my hands I was having such awful side effects from the Tasigna including the dreadful hair loss that I had decided I just had to reduce the dosage. (downunder) takes 400mg Tasigna at night every night and 200mg in the am every other day so I was going to suggest this same drop (I was on 400mg 2 x day). I was shocked when the Onc said he wanted me to just be on 400mg once a day, that means only one bout of fasting a day yay!!!I am having my PCR checked in 6 weeks instead of the usual 12 just to check the lower dosage is keeping me in check. > The reason I am posting this is I thought it may be useful to know that this is an option. It never made sense to me that a 140lb person could be on the same dosage as a 200lb one??? > After 3 mos of Tasignamy hair was falling out and I had no hair growing anywhere (legs etc). After the morning dose I was having to go to bed as I was so Nauseas and felt generally unwell. I have been on the lower dose for one week now and already feel so much better. In the end I was feeling as bad as I did when I was on intravenous chemo (the real deal stuff). > Hope this may help some of you > Regards Donna > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 onthewtr@... wrote: >Yes that is surprising. When I started Tasigna I started on 400 and after 3 weeks I had not reached pcru yet but I was so close! .0075 but they increased it to 600 and within 2 weeks I was pcru. I sometimes wonder if I had stayed at 400 if I would have gotton to pcru. My doctor may have been hasty? I don't know! >Good luck and keep us posted. >Sharon >Sent via BlackBerry by AT & T > > [ ] Tasigna >> >> Hey everyone, >> I went back to my Oncologist last Friday following my latest phenomenal PCR results, after 3 mos on Tasigna I had dropped almost a whole log bringing me to almost PCRU (being 'almost' PCRU is kind of like being 'almost' pregnant though I was so hoping for the big ZERO). I went along to my appointment expecting a big fight on my hands I was having such awful side effects from the Tasigna including the dreadful hair loss that I had decided I just had to reduce the dosage. (downunder) takes 400mg Tasigna at night every night and 200mg in the am every other day so I was going to suggest this same drop (I was on 400mg 2 x day). I was shocked when the Onc said he wanted me to just be on 400mg once a day, that means only one bout of fasting a day yay!!!I am having my PCR checked in 6 weeks instead of the usual 12 just to check the lower dosage is keeping me in check. >> The reason I am posting this is I thought it may be useful to know that this is an option. It never made sense to me that a 140lb person could be on the same dosage as a 200lb one??? >> After 3 mos of Tasignamy hair was falling out and I had no hair growing anywhere (legs etc). After the morning dose I was having to go to bed as I was so Nauseas and felt generally unwell. I have been on the lower dose for one week now and already feel so much better. In the end I was feeling as bad as I did when I was on intravenous chemo (the real deal stuff). >> Hope this may help some of you >> Regards Donna >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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