Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 HI RYAN, IT'S BEEN 10 YRS SINCE I WAS IN THE GLEEVEC TRIAL, BUT I WELL REMEMBER THE SIDE EFFECTS. EXHAUSTED, HEADACHES, NAUSEA, EDEMA, AND A SEVERE PAIN IN MY UPPER LEFT BACK. BUT BE OF GOOD CHEER, THIS ONLY LASTED ABOUT ONE MONTH. AFTER I FOUND WHAT I COULD EAT AND NOT EAT I WAS MUCH BETTER. ALSO, IN THE TRIAL, WE COULD NOT TAKE THE PILLS WITH FOOD, I THINK THAT MADE FOR A LOT OF NAUSEA. THESE SIDE EFFECTS WILL GO AWAY, AND FOR SOME REASON, IF THEY DON'T AFTER A COUPLE OF MONTHS, I THINK PERHAPS A CHANGE OF MEDS WOULD BE IN ORDER. BUT YOU MUST GIVE IT A CHANCE, GLEEVEC DOES WORK. AND ALWAYS KEEP IN MIND, IT IS BETTER THAN WHAT WE HAD 12 YEARS AGO,AND IT IS BETTER THAN THE ALTERNATIVE. WITH GLEEVEC YOU CAN LIVE , WITHOUT IT YOU MOST LIKELY CAN'T. GOOD LUCK, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 From: ryanromero49er <ryan.romero@...> Subject: [ ] Tooth Pain Date: Wednesday, November 4, 2009, 11:29 AM Hi everyone! Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? Thanks guys! Love you all! Romero " Chemo-Sabi " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Hi My son, , is about your age and has had cml for just over three years now, is still on 400mg Gleevec and doing really well after the settling in period. He was also achy and tired and .....well, weary. But that all seemed to go away for him. He still gets cold quickly, is a just tad more tired than others but has found that walking the doglets more and working out has really helped him lots. He has never had an eyebleed, cramps or any of those other side effects...... he might still, but not in the three and a half years of gleevec. I hope your path is as 'easy'. love and light Annie 's mom http://livingwithcml.blogspot.com > > Hi everyone! > > Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... > > Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? > > Thanks guys! > Love you all! > Romero > " Chemo-Sabi " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Thanks Bobby! From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Wednesday, November 04, 2009 12:33 PM Subject: Re: [ ] Tooth Pain HI RYAN, IT'S BEEN 10 YRS SINCE I WAS IN THE GLEEVEC TRIAL, BUT I WELL REMEMBER THE SIDE EFFECTS. EXHAUSTED, HEADACHES, NAUSEA, EDEMA, AND A SEVERE PAIN IN MY UPPER LEFT BACK. BUT BE OF GOOD CHEER, THIS ONLY LASTED ABOUT ONE MONTH. AFTER I FOUND WHAT I COULD EAT AND NOT EAT I WAS MUCH BETTER. ALSO, IN THE TRIAL, WE COULD NOT TAKE THE PILLS WITH FOOD, I THINK THAT MADE FOR A LOT OF NAUSEA. THESE SIDE EFFECTS WILL GO AWAY, AND FOR SOME REASON, IF THEY DON'T AFTER A COUPLE OF MONTHS, I THINK PERHAPS A CHANGE OF MEDS WOULD BE IN ORDER. BUT YOU MUST GIVE IT A CHANCE, GLEEVEC DOES WORK. AND ALWAYS KEEP IN MIND, IT IS BETTER THAN WHAT WE HAD 12 YEARS AGO,AND IT IS BETTER THAN THE ALTERNATIVE. WITH GLEEVEC YOU CAN LIVE , WITHOUT IT YOU MOST LIKELY CAN'T. GOOD LUCK, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 From: ryanromero49er <ryan.romero@... <mailto:ryan.romero%40callfusion.com> > Subject: [ ] Tooth Pain <mailto:%40> Date: Wednesday, November 4, 2009, 11:29 AM Hi everyone! Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? Thanks guys! Love you all! Romero " Chemo-Sabi " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Thanks Annie! From: [mailto: ] On Behalf Of Annie B Sent: Wednesday, November 04, 2009 12:45 PM Subject: [ ] Re: Tooth Pain Hi My son, , is about your age and has had cml for just over three years now, is still on 400mg Gleevec and doing really well after the settling in period. He was also achy and tired and .....well, weary. But that all seemed to go away for him. He still gets cold quickly, is a just tad more tired than others but has found that walking the doglets more and working out has really helped him lots. He has never had an eyebleed, cramps or any of those other side effects...... he might still, but not in the three and a half years of gleevec. I hope your path is as 'easy'. love and light Annie 's mom http://livingwithcml.blogspot.com > > Hi everyone! > > Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... > > Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? > > Thanks guys! > Love you all! > Romero > " Chemo-Sabi " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Hi : Don't get yourself concerned with all this stuff that some of us get. There is a list of all the side effects that you could Possibly Get, But Not Necessarily Get. The other thing is that these symptoms we get come and go. I have experienced the Jaw Pain which is a side effect, but have not had it in awhile. The eyebleeds which is a terrible term to use, but thats what its called. I have gotten them so bad, but they clear up within a week or so. They just look ugly. Again, this does not mean you will get them. You will feel all different sorts of things that you probably never felt before,but you have to keep telling yourself its the treatment that is causing this to kill off the cancer cells, and also the Gleevec is not attacking your good cells. Its targeting the cancer, but just ask anything so we can assure you that your not the only one. Stay Positive. From: ryanromero49er <ryan.romero@...> Subject: [ ] Tooth Pain Date: Wednesday, November 4, 2009, 11:29 AM Hi everyone! Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? Thanks guys! Love you all! Romero " Chemo-Sabi " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 , I was diagnosed 5/09. I am 36 years old. About 5 days after I started Gleevec my teeth and mouth hurt. I also had bumps and itchy gums. It lasted for about a week. I took 600 mg of Mortin and it really helped. I have never gotten the mouth pain back. Thank goodness. I also had a few " eye bleeds " during my first month. And they weren't that bad. Kind of looked like I got hit in the eye. But it would get better as the day passed. Have faith. You will feel better. Jen > > Hi everyone! > > Its , I have a question... I have been on Gleevec for a week now and boy to I feel like crap. No energy, tired all of the time, and now my teeth and gums are hurting.... I don't have any cavities.... Basically I feel like I have the flu all the time. My legs hurt, head, teeth now, tired etc.... > > Those of you that have been on it have you experienced the same thing? I know you guys told me that in 30 days my body should adjust.... That's good news. Now I am hearing about bleeding eyes! I'm a young man (27) Is this all stuff I should be looking forward too? > > Thanks guys! > Love you all! > Romero > " Chemo-Sabi " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 Thanks ! From: [mailto: ] On Behalf Of Rosen Lum Sent: Thursday, November 05, 2009 9:22 AM Subject: [ ] Tooth pain , the other conditions you mention are likely to pass, maybe not all of them in 30 days, but they'll likely pass. However, I've found the tooth pain an unusual but recurrent problem. First I'd get the outbreaks in my mouth, and it would turn into the most god-awful tooth pain. The doc gave me a prescription for Valtrex, Acyclovir also helps -- both antivirals. I take it when I first feel the blisters and outbreaks coming on and it passes quickly. Otherwise the tooth pain would go on for a couple or three weeks and was just agony. The blisters are in the herpes family, and the tooth pain is something called tri-geminal post-herpetic neuralgia. Some doctors will give you neurontin or lyrica for the nerve pain but if I can head it off at the pass I'd just as soon do that. Best of luck. in San Francisco Quote Link to comment Share on other sites More sharing options...
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