Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Hi there I was interested to read this statement in Barb's post good SKIN - - know how Gleevec makes it tear easily and you burn so bad? The last 2 day I have felt like I was burning in various parts of my body. I was gonna ask if anyone had felt this or if its a sign of something bad?? Regards Donna --- In , " Barb Stanley " <barbarastanley@...> wrote: > > > Hello All > > Been a while since I have been here. Lots has happened too. Let me bring > you all up to date. > > I was diagnosed 5/5/02 after losing my mom to CLL in Nov. of 01. I > reached PCRU 5 years ago TODAY and have remained there since. I took 400 > mg gleevec and had initial side effects that were hard but they > subsided. Then about two years ago, they began to gear up and I had so > man of them, wood legs, joint pain and crippling cramps, that I thought > I was going to quit work. I took a gleevec break for 10 weeks, ( in > consult with Drucker and my oncologist). I went back on at 300 mg a day > and the side effects returned. I finally switched drugs to Tasigna on > Dec. 26 of last year. I began at 800 mg and for two weeks, begged for > gleevec again. I had pain, complete body rash, and thought I was going > to go crazy. Then we broke for 5 days. In that short time, all side > effects went away. I began again on Jan. 28 at 400 mg. The side effects > there but mild. I seem to be doing well. The PCRU continues - thanks be > to my God. I have more energy than ever before. My rash is gone. I have > good SKIN - - know how Gleevec makes it tear easily and you burn so bad? > I am working on a tan now!! I do have some water retention and some > joint pain but NOTHING like before. I am a pretty happy camper on this > stuff. So the oncologist says go it this way until August and see if I > do well, then maybe, just maybe we will up it to 800 again. I think I > will try to talk him out of it though. > > I am well, happy and about to take a group of 18 from the school I teach > at to Tijuana Mexico for mission work next week on spring break. It > should be fun. > > Hope all are well and I give you all my best. > > Barb in AZ > > PS: HI SUSAN!! GOOD TO HEAR FROM YOU! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Donna On gleevec I had 'hot spots' sort of. I would flush in the face and then it would subside. Then I would burn in the shoulders, then it would go away. The soles of my feet would do the same thing too. I don't know if this is what you are speaking of or not. Does this sound familiar? Barb > > > > > > Hello All > > > > Been a while since I have been here. Lots has happened too. Let me > bring > > you all up to date. > > > > I was diagnosed 5/5/02 after losing my mom to CLL in Nov. of 01. I > > reached PCRU 5 years ago TODAY and have remained there since. I > took 400 > > mg gleevec and had initial side effects that were hard but they > > subsided. Then about two years ago, they began to gear up and I > had so > > man of them, wood legs, joint pain and crippling cramps, that I > thought > > I was going to quit work. I took a gleevec break for 10 weeks, ( in > > consult with Drucker and my oncologist). I went back on at 300 mg > a day > > and the side effects returned. I finally switched drugs to Tasigna > on > > Dec. 26 of last year. I began at 800 mg and for two weeks, begged > for > > gleevec again. I had pain, complete body rash, and thought I was > going > > to go crazy. Then we broke for 5 days. In that short time, all side > > effects went away. I began again on Jan. 28 at 400 mg. The side > effects > > there but mild. I seem to be doing well. The PCRU continues - > thanks be > > to my God. I have more energy than ever before. My rash is gone. I > have > > good SKIN - - know how Gleevec makes it tear easily and you burn so > bad? > > I am working on a tan now!! I do have some water retention and some > > joint pain but NOTHING like before. I am a pretty happy camper on > this > > stuff. So the oncologist says go it this way until August and see > if I > > do well, then maybe, just maybe we will up it to 800 again. I think > I > > will try to talk him out of it though. > > > > I am well, happy and about to take a group of 18 from the school I > teach > > at to Tijuana Mexico for mission work next week on spring break. It > > should be fun. > > > > Hope all are well and I give you all my best. > > > > Barb in AZ > > > > PS: HI SUSAN!! GOOD TO HEAR FROM YOU! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Barb Yes this sounds like it although mine is under the bust and down the tops of my arms but then occasionally in my thighs???? What a carry on??? Regards, Donna > > > > > > > > > Hello All > > > > > > Been a while since I have been here. Lots has happened too. Let me > > bring > > > you all up to date. > > > > > > I was diagnosed 5/5/02 after losing my mom to CLL in Nov. of 01. I > > > reached PCRU 5 years ago TODAY and have remained there since. I > > took 400 > > > mg gleevec and had initial side effects that were hard but they > > > subsided. Then about two years ago, they began to gear up and I > > had so > > > man of them, wood legs, joint pain and crippling cramps, that I > > thought > > > I was going to quit work. I took a gleevec break for 10 weeks, ( in > > > consult with Drucker and my oncologist). I went back on at 300 mg > > a day > > > and the side effects returned. I finally switched drugs to Tasigna > > on > > > Dec. 26 of last year. I began at 800 mg and for two weeks, begged > > for > > > gleevec again. I had pain, complete body rash, and thought I was > > going > > > to go crazy. Then we broke for 5 days. In that short time, all side > > > effects went away. I began again on Jan. 28 at 400 mg. The side > > effects > > > there but mild. I seem to be doing well. The PCRU continues - > > thanks be > > > to my God. I have more energy than ever before. My rash is gone. I > > have > > > good SKIN - - know how Gleevec makes it tear easily and you burn so > > bad? > > > I am working on a tan now!! I do have some water retention and some > > > joint pain but NOTHING like before. I am a pretty happy camper on > > this > > > stuff. So the oncologist says go it this way until August and see > > if I > > > do well, then maybe, just maybe we will up it to 800 again. I think > > I > > > will try to talk him out of it though. > > > > > > I am well, happy and about to take a group of 18 from the school I > > teach > > > at to Tijuana Mexico for mission work next week on spring break. It > > > should be fun. > > > > > > Hope all are well and I give you all my best. > > > > > > Barb in AZ > > > > > > PS: HI SUSAN!! GOOD TO HEAR FROM YOU! > > > > > > Quote Link to comment Share on other sites More sharing options...
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