Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 , Thanks for the info on food combining I'll certainly share this with Gramma, as it might help with her burping problem. Dee ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. Hugs, Judy P. in Calgary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite.               dee ________________________________ From: " JudyPrusky, Calgary " <leukie2002@...> Sent: Thu, April 22, 2010 11:04:24 AM Subject: [ ] Re: Dee  I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. Hugs, Judy P. in Calgary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 I've found that Imodium works very well for the diarrhea. > > its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. >               dee > > > > > ________________________________ > From: " JudyPrusky, Calgary " <leukie2002@...> > > Sent: Thu, April 22, 2010 11:04:24 AM > Subject: [ ] Re: Dee > >  > I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. > Hugs, > Judy P. in Calgary > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 I find that the diarhea is very troublesome, especially to travel. I am a joke with my wife. Any time we go shopping, the first thing I do is hear to the mens room. I as told not to take the Immodium for a prolong period. So I usually suffer unless I know I will have trouble finds a mens room. As for the appetite.....when I had my transplant 15 years ago I was at 300. and In the hospital I gained 10 pounds. I have been over 415 down to the 330 then back up to my present weight of 385. I know it must not be fun for you, but I would really love not to have an appetite. My appetite increase as I began to do a lot of cooking with spices. Has anyone else had a problem gaining weight? ________________________________ From: Dee <dallen145@...> Sent: Thu, April 22, 2010 11:18:47 AM Subject: Re: [ ] Re: Dee its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. dee ____________ _________ _________ __ From: " JudyPrusky, Calgary " <leukie2002 (DOT) ca> groups (DOT) com Sent: Thu, April 22, 2010 11:04:24 AM Subject: [ ] Re: Dee I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. Hugs, Judy P. in Calgary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 I lived on Imodium when I was on Gleevec. I hated it!!! _____ From: [mailto: ] On Behalf Of traceyincanada Sent: Thursday, April 22, 2010 11:54 AM Subject: [ ] Re: Dee I've found that Imodium works very well for the diarrhea. > > its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. >               dee > > > > > ________________________________ > From: " JudyPrusky, Calgary " <leukie2002@...> > groups (DOT) <mailto:%40> com > Sent: Thu, April 22, 2010 11:04:24 AM > Subject: [ ] Re: Dee > >  > I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. > Hugs, > Judy P. in Calgary > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Yes,I gained weight when I switched from Gleevec to Sprycel..I lost weight on Gleevec but gained 35 in 2.5 months when I started Sprycel..I have had GastricBypass surgery and Lapband surgery both before CML.I eat very little.I exercise 1 hour a day everyday.I have not been able to lose the gain.It is very frustrating and definately not for lack of effort..I journel all my intake and keep my calories between 1400-1600 daily.I don't eat sugar,junk food,milks and rarely eat rice,potatoes or noodles..Not much else I can do.. I keep working at it.. SharonS > > I find that the diarhea is very troublesome, especially to travel. I am a joke with my wife. Any time we go shopping, the first thing I do is hear to the mens room. I as told not to take the Immodium for a prolong period. So I usually suffer unless I know I will have trouble finds a mens room. > > As for the appetite.....when I had my transplant 15 years ago I was at 300. and In the hospital I gained 10 pounds. I have been over 415 down to the 330 then back up to my present weight of 385. I know it must not be fun for you, but I would really love not to have an appetite. My appetite increase as I began to do a lot of cooking with spices. > > Has anyone else had a problem gaining weight? > > > > > ________________________________ > From: Dee <dallen145@...> > > Sent: Thu, April 22, 2010 11:18:47 AM > Subject: Re: [ ] Re: Dee > > > its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. > dee > > ____________ _________ _________ __ > From: " JudyPrusky, Calgary " <leukie2002 (DOT) ca> > groups (DOT) com > Sent: Thu, April 22, 2010 11:04:24 AM > Subject: [ ] Re: Dee > > > I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. > Hugs, > Judy P. in Calgary > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 You have brought back awful memories!!! I too remember sitting at the breakfast table with my head in my hands forcing myself to eat so I could take the Gleevec. It didn't last all day, that I can remember, but at that time of day it was awful. I hope you're feeling better. God Bless, Jackie S. ________________________________ From: " JudyPrusky, Calgary " <leukie2002@...> Sent: Thu, April 22, 2010 10:04:24 AM Subject: [ ] Re: Dee I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. Hugs, Judy P. in Calgary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ________________________________ > > From: " JudyPrusky, Calgary " <leukie2002@> > > groups (DOT) <mailto:%40> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 I do so agree. My doctor prescribed something for me, ( I don't have the name with me right now) but it is safe and works wonderfully. Talk to your doctor about what you need. Blessings, Jo-Dee From: traceyincanada <traceyincanada@...> Subject: [ ] Re: Dee Date: Friday, April 23, 2010, 8:54 AM  I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium?           dee ________________________________ From: traceyincanada <traceyincanada@...> Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee  I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 I also lost 15 pounds while on Gleeved because of that. _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ________________________________ From: traceyincanada <traceyincanada@ <mailto:traceyincanada%40> > groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping.                    dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee  I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him.                           dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee  Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Hi Sharon, Wow you had both operations...so you know the frustrations. My doctor wants me to have the Gastric ByPass, but my wife is dead set against it Of course she only weighs 130. Hard to explain the frustrations and have her understand it. I agreeded to do the Lapband, but she lost her job a few weeks ago so now I have to try to convience Medicare to pay for it. Well I hope something just clicks for you and you begin to loose. Walt ________________________________ From: Serenity <serenitywon@...> Sent: Thu, April 22, 2010 10:25:28 PM Subject: [ ] Re: Dee Yes,I gained weight when I switched from Gleevec to Sprycel..I lost weight on Gleevec but gained 35 in 2.5 months when I started Sprycel..I have had GastricBypass surgery and Lapband surgery both before CML.I eat very little.I exercise 1 hour a day everyday.I have not been able to lose the gain.It is very frustrating and definately not for lack of effort..I journel all my intake and keep my calories between 1400-1600 daily.I don't eat sugar,junk food,milks and rarely eat rice,potatoes or noodles..Not much else I can do.. I keep working at it.. SharonS > > I find that the diarhea is very troublesome, especially to travel. I am a joke with my wife. Any time we go shopping, the first thing I do is hear to the mens room. I as told not to take the Immodium for a prolong period. So I usually suffer unless I know I will have trouble finds a mens room. > > As for the appetite.... .when I had my transplant 15 years ago I was at 300. and In the hospital I gained 10 pounds. I have been over 415 down to the 330 then back up to my present weight of 385. I know it must not be fun for you, but I would really love not to have an appetite. My appetite increase as I began to do a lot of cooking with spices. > > Has anyone else had a problem gaining weight? > > > > > ____________ _________ _________ __ > From: Dee <dallen145@. ..> > groups (DOT) com > Sent: Thu, April 22, 2010 11:18:47 AM > Subject: Re: [ ] Re: Dee > > > its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. > dee > > ____________ _________ _________ __ > From: " JudyPrusky, Calgary " <leukie2002@ . ca> > groups (DOT) com > Sent: Thu, April 22, 2010 11:04:24 AM > Subject: [ ] Re: Dee > > > I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. > Hugs, > Judy P. in Calgary > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing.         dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee  No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Where do you live Dee? Sharon T _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 a little town called columbia, pa. in amish country.              dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 11:33:39 AM Subject: RE: [ ] Re: Dee  Where do you live Dee? Sharon T _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 what do you take for a headache? i hear so many dont take this or that stuff.          dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 11:33:39 AM Subject: RE: [ ] Re: Dee  Where do you live Dee? Sharon T _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Walt, If I had it to do over again I would not have had the RNY.The malabsorption issues has been terrible..I am vitamin deficient in a few things and require infusions occassionly.The lapband I feel is just as effective and doesn't have as many problems from absorption and such..I hope Medicare approves the surgery for you.I will include an online support group link if you are interested in looking around there and asking questions and such..Always good to be well informed.Keep working on the weight loss.I know how difficult it is. Bandsters/ SharonS > > > > I find that the diarhea is very troublesome, especially to travel. I am a joke with my wife. Any time we go shopping, the first thing I do is hear to the mens room. I as told not to take the Immodium for a prolong period. So I usually suffer unless I know I will have trouble finds a mens room. > > > > As for the appetite.... .when I had my transplant 15 years ago I was at 300. and In the hospital I gained 10 pounds. I have been over 415 down to the 330 then back up to my present weight of 385. I know it must not be fun for you, but I would really love not to have an appetite. My appetite increase as I began to do a lot of cooking with spices. > > > > Has anyone else had a problem gaining weight? > > > > > > > > > > ____________ _________ _________ __ > > From: Dee <dallen145@ ..> > > groups (DOT) com > > Sent: Thu, April 22, 2010 11:18:47 AM > > Subject: Re: [ ] Re: Dee > > > > > > its hard to take them if you dont have a appetite and i was taking half in the morning and half at supper but then its diarhea all day. i need something to increase my appetite. > > dee > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ . ca> > > groups (DOT) com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > > > > I am on the 100mg pills of Gleevec, four at a time because I couldn't tolerate the 400mg pill. When they came out with the 400 mg one it made me sick so I went back to the original 100mg ones. It takes me about 20 minutes to get them down as I allow about 5 minutes in between each one. I also take them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Dee for some strange reason I do not get headaches anymore except maybe sometimes in the mornings but a very slight one. If I do need anything for pain (sometimes I get back pain when I overdo) I use ibuprofen. I don’t think asprin is good for you when on this medication. Not sure. But my Dr. told me to use Ibuprofen. _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 9:08 AM Subject: Re: [ ] Re: Dee what do you take for a headache? i hear so many dont take this or that stuff. dee ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 11:33:39 AM Subject: RE: [ ] Re: Dee Where do you live Dee? Sharon T _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Do you get cold alot? Its like 68 here today but I am cold. I never use to be like that but then at night I get hot. My daughter came in a short sleeved shirt and I have a sweatshirt on plus my house doesnt get alot of sun except in my bedroom so its cold in here to me. Where do you live? I never asked you earlier. I have these little red spots on my hands today, they dont itch. Is that from the gleevec too? I got migraines for over 10 years but they had stopped when i started taking the gleevec but been getting some bad headaches lately. I hope they dont come back now. How do you space your tasigna out on taking it? Dont you need 12 hrs apart in the dosage?  I wake my 15 year old up at 6.30 am so I could take it then cause my stomach would be empty but then would have to not eat from 3pm to take around 5.30 when we have supper and then not eat for a hour right? Do you have to take a nausea pill at all with it? Just checking in case he would want to change me cause of these awful side effects. The Sprycel scares me cause of the fluid build up but then I have to be watched closely on the Tasigna cause of the qt interval thing. I think I am going to go back to the GI drs, went before cause of irritable bowel snydrome, it was constipation then now its the opposite. I feel like my stomach is full but havent eaten anything. I have to force myself to drink water, never was a big water drinker, I like my ice tea. My husband has a blockage in his one leg so the heart dr put him on meds for that and found out he's borderline diabetic, runs in his family. He also has to lose 20lbs by the time he goes back in a couple of months so he is like reading labels and starving and I am the opposite. Dr said if he watches what he eats and loses the weight he wont need to go on any meds. He was a big pepsi drinker so hes like having withdrawels cause he doesnt like the diet. He has been drinking diet tea but its not very tasty he says. sorry this is so long, got carried away with my typing.              thanks for listening, dee ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Fri, April 23, 2010 12:39:40 PM Subject: RE: [ ] Re: Dee  Dee for some strange reason I do not get headaches anymore except maybe sometimes in the mornings but a very slight one. If I do need anything for pain (sometimes I get back pain when I overdo) I use ibuprofen. I don’t think asprin is good for you when on this medication. Not sure. But my Dr. told me to use Ibuprofen. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 9:08 AM groups (DOT) com Subject: Re: [ ] Re: Dee what do you take for a headache? i hear so many dont take this or that stuff. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 11:33:39 AM Subject: RE: [ ] Re: Dee Where do you live Dee? Sharon T _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Dear Dee, How long have you had CML? I have had it for going on 6 years in July. I used to get cold all the time on Gleevec and Sprycel. But do not on Tasigna. I was a lot thinner then too because as I told you I lost 15 pounds while on Gleevec from going to the bathroom so much. I am 5 ft. 1 inch and I was down to 105. I loved it but now I am at 135. When I went on the tasigna I gained weight but I can control it if I want to. I love to eat. I live in Northern California in a little town called Discovery Bay. It is on the Delta and our back yard is water. We do a lot of boating. This is h ow I take my pills. of NY almost does it the same way. It works for us. I get up about 7am. I MUST have coffee as soon as I get up so I have about two cups then at about 8:30 my husband and I juice with our juicer (love it and I think it helps me a lot) then I wait till about 11:30 and take my one pill (200mg.) then after an hour or so if I am hungry I can eat. So then I can eat all day and stop eating at about 8:30 and go to bed at 11:30 and take my other pills then. This really works for me. No no nausea pills needed with Tasigna --- not like gleevec. Yes I was on Sprycel for three whole years and I had tons of side effects and finally got Plural Efusion and then had to stop me on that. I was so nervous to take yet another medicat ion. But it is best thing that has ever happened to me. For some reason this Tasigna is for me. And I have been PCRU with a 5 log reduction for two years. I have been on Tasigna for two years (March made two years) You have to take Tasigna at least 2 to three hours after you have eaten (if you have eaten) (you do not need to eat before taking it) But say you have dinner at 5:30pm then you have to wait till at least 8 or 8:30 to take the pill. Then you need to wait at least an hour after you take the pill to eat. Again. I hope I am being clear. You will get a pamphlet with your medication that will explain it all. I go for an ekg every 4 months. So far I am fine. I love chatting with you I wish that I could help you more. Just feel free to ask me anything you like. Take Care Sharon T _____ From: [mailto: ] On Behalf Of Dee Sent: Friday, April 23, 2010 2:11 PM Subject: Re: [ ] Re: Dee Do you get cold alot? Its like 68 here today but I am cold. I never use to be like that but then at night I get hot. My daughter came in a short sleeved shirt and I have a sweatshirt on plus my house doesnt get alot of sun except in my bedroom so its cold in here to me. Where do you live? I never asked you earlier. I have these little red spots on my hands today, they dont itch. Is that from the gleevec too? I got migraines for over 10 years but they had stopped when i started taking the gleevec but been getting some bad headaches lately. I hope they dont come back now. How do you space your tasigna out on taking it? Dont you need 12 hrs apart in the dosage? I wake my 15 year old up at 6.30 am so I could take it then cause my stomach would be empty but then would have to not eat from 3pm to take around 5.30 when we have supper and then not eat for a hour right? Do you have to take a nausea pill at all with it? Just checking in case he would want to change me cause of these awful side effects. The Sprycel scares me cause of the fluid build up but then I have to be watched closely on the Tasigna cause of the qt interval thing. I think I am going to go back to the GI drs, went before cause of irritable bowel snydrome, it was constipation then now its the opposite. I feel like my stomach is full but havent eaten anything. I have to force myself to drink water, never was a big water drinker, I like my ice tea. My husband has a blockage in his one leg so the heart dr put him on meds for that and found out he's borderline diabetic, runs in his family. He also has to lose 20lbs by the time he goes back in a couple of months so he is like reading labels and starving and I am the opposite. Dr said if he watches what he eats and loses the weight he wont need to go on any meds. He was a big pepsi drinker so hes like having withdrawels cause he doesnt like the diet. He has been drinking diet tea but its not very tasty he says. sorry this is so long, got carried away with my typing. thanks for listening, dee ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Fri, April 23, 2010 12:39:40 PM Subject: RE: [ ] Re: Dee Dee for some strange reason I do not get headaches anymore except maybe sometimes in the mornings but a very slight one. If I do need anything for pain (sometimes I get back pain when I overdo) I use ibuprofen. I don’t think asprin is good for you when on this medication. Not sure. But my Dr. told me to use Ibuprofen. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Dee Sent: Friday, April 23, 2010 9:08 AM groups (DOT) com Subject: Re: [ ] Re: Dee what do you take for a headache? i hear so many dont take this or that stuff. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 11:33:39 AM Subject: RE: [ ] Re: Dee Where do you live Dee? Sharon T _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:43 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am only 52 and right now its a struggle to enjoy anything. i have grandkids to but cant seem to tolerate them very long when there here cause i feel so bad. my daughter had twin boys back in oct and i have missed so much of them cause i was to sick to go there(which is a block away) and when she comes here it works on my nerves. i have a birthday party tomorrow for my 15 yr old and i had to make sure my husband was going to be here to help cause i never know how i will feel. i have a 2 week beach trip in july and i want to enjoy it but right now i sure couldnt. last year when i went i was fine but i was on that elavil and had no problems. it was very relaxing. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:31:07 AM Subject: RE: [ ] Re: Dee No no nausea at all. I am glad you switched doctors. That old one sounds terrible. No one has to put up with that. Well Quality of Life is very important to me and I am 67 years old and I am feeling wonderful and can keep up with my grandkids, walk, ride bikes jet ski. I feel normal. As long as they watch you and your qt you may consider a switch. Talk to your Doctor about it., Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:26 AM groups (DOT) com Subject: Re: [ ] Re: Dee my heart dr said i was ok to take the tasigna, we just have to do ecg's on me. the qt thing is corrected and normal now he said. do you get the nausea with tasigna? i have a whole months supply here of tasigna cause my old onc was going to switch me until the ecg came back showing the qt. but after heart dr stopped the elavil next ecg was ok and he said i could use the tasigna with reguler ecg's. but i switched onc cause the old one was getting really nasty when i would ask him questions and not explain things to me. last appt he told me to hurry up cause he had other patients waiting. my daughter in law told him what she thought and i went to a new one that has more than just 2 people with cml. the old one had me and a big man and he kept comparing me to him, saying how well he was doing. he was alot bigger than me, i weigh 120 lbs compared to about 275 so i guess so. he just happened to be there one day so i got to see him. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 10:06:34 AM Subject: RE: [ ] Re: Dee Dee I was going to suggest you ask to switch meds .like maybe Tasigna because Sprycel did the same thing to my stomach but not as bad but Tasigna does not AT ALL! But if you have problems with that qt thing they may not want to do that. Maybe in time it will all go away, a lot of people are fine with Gleevec after awhile. I was not for soooooo many other reasons. It is amazing how each medication works so differently on people. Gleevec and sprycil kicked my B—t But Tasigna is so kind to me I do not even know I have CML. I just hope it lasts. Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 7:01 AM groups (DOT) com Subject: Re: [ ] Re: Dee i am on remeron to increase my appetite and gain weight but the gleevec must be stronger than it cause its not doing much. was suppose to work right away and its been almost a month. plus i have trouble with sleeping. i was on elavil for years and when i was first put on gleevec and i had no problems but they found that qt interval thing of my heart so they stopped me cold turkey from the elavil and thats when this all started. my qt is corrected and fine now so i dont know why they cant give me a low dose of the elavil for my appetite and just watch the qt. i was on elavil to control migraines for many years and had no problems eating or sleeping. dee ____________ _________ _________ __ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net> net> groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 9:42:37 AM Subject: RE: [ ] Re: Dee I also lost 15 pounds while on Gleeved because of that. _____ From: groups (DOT) com [mailto:] On Behalf Of Dee Sent: Friday, April 23, 2010 6:20 AM groups (DOT) com Subject: Re: [ ] Re: Dee At first it was constipation now its the opposite. When I take it at supper i dont get the diarhea, but first thing every morning i do. Wont I get constipated if i use the imodium? dee ____________ _________ _________ __ From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com> > groups (DOT) <mailto:% 40groups. com> com Sent: Fri, April 23, 2010 8:54:03 AM Subject: [ ] Re: Dee I'm not a fan of taking any more drugs than I have to but when I found myself spending my days in the bathroom, depleting my electrolytes and risking the loss of my cytogenetic response due to the drug not being absorbed, I thought Imodium was a fantastic solution and loved that it allowed me to live a normal life. The bottom line is if you're having severe diarrhea all the time, the drug will not be able to stay in your body long enough to do what it's supposed to do. I think taking an extra pill for the diarrhea is a much better idea than losing your life because the Gleevec isn't getting absorbed. Tracey > > > > its hard to take them if you dont have a appetite and i was taking half in > the morning and half at supper but then its diarhea all day. i need > something to increase my appetite. > >               dee > > > > > > > > > > ____________ _________ _________ __ > > From: " JudyPrusky, Calgary " <leukie2002@ > > > groups (DOT) <mailto:% 40groups. com> com > > Sent: Thu, April 22, 2010 11:04:24 AM > > Subject: [ ] Re: Dee > > > >  > > I am on the 100mg pills of Gleevec, four at a time because I couldn't > tolerate the 400mg pill. When they came out with the 400 mg one it made me > sick so I went back to the original 100mg ones. It takes me about 20 minutes > to get them down as I allow about 5 minutes in between each one. I also take > them with breakfast. > > Hugs, > > Judy P. in Calgary > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.