Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Sue, your daughter is having close to what is declared Gleevec " intolerance " . Gleevec failure is when the disease progresses rather than digresses, likely because of mutations. Intolerance is one fo the criteria that would allow your daughter to get into one the other two drug trials, BMS and/or AMN. By the way, Gleevec failure is also a criteria to get in those studies. Best wishes, _____ From: S. Folle [mailto:loggin23@...] Sent: Thursday, March 02, 2006 1:05 PM Subject: [ ] GLEEVEC FAILURE Could someone please explain to me how you determine " Gleevec failure?: Is it when the side effects become so obtrusive that you can't continue taking it or when the Gleevec isn't working to fight the cancer? My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living. " Sue --------------------------------- Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi Sue, I'm having problems getting into a BMS trial even though I'm losing my response to Gleevec. In the interim, I just want to mention to you some things that may help your daughter. Forgive me, if you already know all of this. Procrit or aranasep shots at regular intervals boost the production of red cells for patients who have chemotherapy caused anemia and have fatigue. Have her Hemaglobin checked and ask her doctor if Procrit would help. Then make sure her insurance will cover it. It's very expensive but can completely eliminate fatigue. As for diarreah, immodium ad (otc) is still the best anti-diarreahal I know of. I never have known how to spell diarreah, by the way so excuse it if it's wrong again! Good luck! L [ ] GLEEVEC FAILURE Could someone please explain to me how you determine " Gleevec failure?: Is it when the side effects become so obtrusive that you can't continue taking it or when the Gleevec isn't working to fight the cancer? My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living. " Sue --------------------------------- Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Sue, how long has she been taking Gleevec? What's her dose? Is her doc working with her to aggressively manage the side effects, or is s/he a " just be grateful there's Gleevec and quit bitching " type? A lot of us have dealt with these side effects but in many cases they've lessened over time. The first few months I had nausea, bone and joint pain that kept me awake at night, rashes and just utter exhaustion. I'm getting close to a year on Gleevec and some of those have passed or lessened and others I'm managing -- take compazine for the nausea, gab frequent cat naps throughout the day. Please stay in touch and let us know how it's going. The depression over side effects can really wallop you and support is important. " S. Folle " wrote: > Could someone please explain to me how you determine " Gleevec failure?: Is it when the side effects become so obtrusive that you can't continue taking it or when the Gleevec isn't working to fight the cancer? > My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. > Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living. " > > Sue > > > > --------------------------------- > > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Procrit! My doc never mentioned that. Exactly what is that? I'd be thrilled to get my energy back! Especially mental energy! Loewenkamp wrote: > Hi Sue, > > I'm having problems getting into a BMS trial even though I'm losing my response to Gleevec. In the interim, I just want to mention to you some things that may help your daughter. Forgive me, if you already know all of this. Procrit or aranasep shots at regular intervals boost the production of red cells for patients who have chemotherapy caused anemia and have fatigue. Have her Hemaglobin checked and ask her doctor if Procrit would help. Then make sure her insurance will cover it. It's very expensive but can completely eliminate fatigue. As for diarreah, immodium ad (otc) is still the best anti-diarreahal I know of. I never have known how to spell diarreah, by the way so excuse it if it's wrong again! > > Good luck! > > L > [ ] GLEEVEC FAILURE > > Could someone please explain to me how you determine " Gleevec failure?: Is it when the side effects become so obtrusive that you can't continue taking it or when the Gleevec isn't working to fight the cancer? > My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. > Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living. " > > Sue > > > > --------------------------------- > > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Your mentioning that rang a gong for me. Along with this fatigure, I've had this weird symptom -- I can't quit yawning! -- that actually can be very frightening. I just feel like I can't get a breath, despite continuous, excessive yawning. I didn't know what that was about. Cogan wrote: > At 11:11 AM 3/2/06 -0800, you wrote: > > >Procrit! My doc never mentioned that. Exactly what is that? I'd be > >thrilled to get my energy back! Especially mental energy! > > > > > > Hi , > > Procrit is a red cell booster and is only for low red cells or hemoglobin, > not for general fatigue. Usually if you are lower than hgb of 10....it is > considered/recommended and insurance will cover it. > Low hgb can make you feel tired, out of breath with activity and maybe also > mentally tired.....because you have less oxygen in your blood. > > C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 At 11:11 AM 3/2/06 -0800, you wrote: >Procrit! My doc never mentioned that. Exactly what is that? I'd be >thrilled to get my energy back! Especially mental energy! > > Hi , Procrit is a red cell booster and is only for low red cells or hemoglobin, not for general fatigue. Usually if you are lower than hgb of 10....it is considered/recommended and insurance will cover it. Low hgb can make you feel tired, out of breath with activity and maybe also mentally tired.....because you have less oxygen in your blood. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 At 11:45 AM 3/2/06 -0800, you wrote: >Your mentioning that rang a gong for me. Along with this fatigure, I've had >this weird symptom -- I can't quit yawning! -- that actually can be very >frightening. I just feel like I can't get a breath, despite continuous, >excessive yawning. I didn't know what that was about. Do you know what your hgb or hct are?? do you get copies of your blood tests. I use Procrit, did not need it on 400mg Gleevec, but did when I went to 800mg....(I am now on BMS and still use Procrit). At hbg of 10, I am dragging a bit and mentally tired..........We try to keep my hgb closer to the low end of normal at 12. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hello Sue, it's been a while since we chatted. I am sorry to hear that your daughter is having such a rough time with Gleevec. My first question is how many mgs is she taking and when was her last PCR test and or BMB? Also what were the results of these test? ez Message: 10 Date: Thu, 2 Mar 2006 10:04:38 -0800 (PST) From: " S. Folle " <loggin23@...> Subject: GLEEVEC FAILURE Could someone please explain to me how you determine " Gleevec failure?: Is it when the side effects become so obtrusive that you can't continue taking it or when the Gleevec isn't working to fight the cancer? My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living. " Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 In a message dated 3/2/2006 1:05:41 P.M. Eastern Standard Time, loggin23@... writes: My daughter is having such adverse side effects with fatigue, pigmentation changes, diarrhea that I think it is time to look at other options but because it continues to fight the leukemia, she doesn't think she should stop it. Of course, it is her decision and I respect that but it sure is hard to hear her say she is " existing " instead of " living Dear Sue, I know just what your daughter means. Quality of life sure is hard to maintain while undergoing this treatment. I live, but I don't feel as though I " thrive " and your last sentence really does sum it up. I know a lot of us suffer the same side effects and I am truly amazed at how some people do so well and others do not on Gleevec. I sure wish there would come a day when I felt well enough to do a full day's work, just grocery shopping leaves me feeling so tired I cannot even think of cooking a meal afterwards. But I do try and get out each day just to give myself the feeling of " living " and not giving in to Gleevec's mean side effects. My heart goes out to your daughter, please tell her she is not alone in feeling the way she does. - Lynne A. Quote Link to comment Share on other sites More sharing options...
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