Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Hi Barb I was very interested to hear about your 'hot spots', it sounds just like what I suffered with whilst I was on glivec and dasatinib. I am in the Uk and I couldn't find anyone else who had this. I used to describe it a funny skin feeling, like a flash or flush, lasted anywhere from minutes to hours at varying intervals on varying parts of my body. Interestingly I also developed severe pain in my feet, (improved with steroids) which was worse when I first got out of bed and then got a bit better. I didn't link the 2 things but maybe they are related. My consultant hadn't heard of this side effect but maybe there are more people with it. It is so hard to describe. I had other side effects and I eventually went on to have a transplant, which so far has been very easy. I hope that tasigna works well for you and that you don't get this skin problem. All the best www.caringbridge.org/visit/susanleigh skype ID: susan-leigh On 17 Mar 2008, at 23:24, Barb Stanley wrote: > > 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...
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