Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Greetings: I am a newbie just having been diagnosed on 12-31-07. I am on Gleevec and have developed a rash. Also, I have a swollen face and puffiness around my eyes. I have always had a lot of energy but do have a lot of fatigue and can sleep right after I have had a nap. Any similar experiences and suggestions about what to do about these side effects? I have been reading this site for about three weeks. I noticed that some of your WBC figures were in the hundred thousand levels. My highest was only 47,000 and six months prior, the WBC was in the normal range. Is there any correlation between higher numbers and time it takes to reach CCR? What is your opinion about taking below 400 mg of Gleevec? My onc, due to the rash, has reduced my level to 100, 200,or 300 mg? I enjoy the info and support that is exchanged on this site. Reading what you have to say is helpful to me. I found that I live close to Zazzy and look forward to meeting her. AndeJane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Zazzy I had that awful rash o Gleevec also. Oh my it was terrible. I did not even want to go out of the house. And even after I stopped Gleevec it took months to go away. I even had to go to a dermatologist. I was on an Obagi treatment. It was all over my face, arms, legs-I think it was the worst thing that happened to me also. That is why I am so sad t hat I had to stop Sprycel---I had hardly any side effects o Sprycel. Sharon _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Tuesday, March 11, 2008 7:21 AM Subject: Re: [ ] Gleevec Side Effects Don't let that rash get ahead of itself, I had the rash from Hell while on Gleevec, if I could post a picture on this site , I would. Unbelievable, it is without a doubt the worst thing that ever happened to me. I finally had it biopsied, they put me on a cortisone cream, and prednisone, but it took months to get better. I even went to an acupuncturist, parts of my skin had ulcerated and I was a mess. On to good thoughts! It is great meeting up with others in the same boat. I have met Lottie, in Houston, when we were both in the Sprycel trial, and many others. We would all meet in the lobby at MDACC, get our labs and compare notes. I met Len and ERnie Paschal, who have gone on to the U. of Mich, in Ann Arbor in order to stay with Dr. Talpaz who moved there, and we see each other all the time. Meeting others is the up-side of cml, and the web sites are another su-side, where else would be all get more information from, it seems the doctors are not always that forth coming with it. Take good care of that rash, Bobby Carol Hanson <chansonnetzero (DOT) <mailto:chanson%40netzero.com> com> wrote: We'll have to make that happen sometime this summer! There aren't very many of us in this area with CML. What I find strange is that there are two of us here in St. Maries.. a small burg of 2,500. The fact that Mike lived one block from me at the time of dx is also amazing. When he was dxed his son came over and got my binder that I had been putting all my CML info in. I see his wife all the time and keep up with Mike's progress. He was referred to an onc in Spokane who was wise enoguh to send him along to OHSU to see one of Dr. Druker's colleagues. He is doing well now, after some initial problems. Another case was the husband of one of our nurses here. He had a BMT a few years back though. What is strange is that we both lived in previous mining communities in north central Idaho and now live downstream from a Superfund site. Take care, Zazzy [ ] Gleevec Side Effects Greetings: I am a newbie just having been diagnosed on 12-31-07. I am on Gleevec and have developed a rash. Also, I have a swollen face and puffiness around my eyes. I have always had a lot of energy but do have a lot of fatigue and can sleep right after I have had a nap. Any similar experiences and suggestions about what to do about these side effects? I have been reading this site for about three weeks. I noticed that some of your WBC figures were in the hundred thousand levels. My highest was only 47,000 and six months prior, the WBC was in the normal range. Is there any correlation between higher numbers and time it takes to reach CCR? What is your opinion about taking below 400 mg of Gleevec? My onc, due to the rash, has reduced my level to 100, 200,or 300 mg? I enjoy the info and support that is exchanged on this site. Reading what you have to say is helpful to me. I found that I live close to Zazzy and look forward to meeting her. AndeJane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 AndeJane, I also had a terrible rash when I first started Gleevec 6.5 years ago. I stopped gleevec completely and took 5 days of Prednisone to stop the rash. Five weeks later when all the redness was gone, I tried gleevec again and didn't get a rash the second time. In response to your comment about lower doses, if there is a CML doc in your area, I would advise getting a consult. Lower doses are not usually recommended by the experts. Fran > > Greetings: > I am a newbie just having been diagnosed on 12-31-07. I am on > Gleevec and have developed a rash. Also, I have a swollen face and > puffiness around my eyes. I have always had a lot of energy but do > have a lot of fatigue and can sleep right after I have had a nap. > Any similar experiences and suggestions about what to do about these > side effects? > > I have been reading this site for about three weeks. I noticed that > some of your WBC figures were in the hundred thousand levels. My > highest was only 47,000 and six months prior, the WBC was in the > normal range. Is there any correlation between higher numbers and > time it takes to reach CCR? > > What is your opinion about taking below 400 mg of Gleevec? My onc, > due to the rash, has reduced my level to 100, 200,or 300 mg? > > I enjoy the info and support that is exchanged on this site. Reading > what you have to say is helpful to me. I found that I live close to > Zazzy and look forward to meeting her. > > AndeJane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 When I began Gleevec last March I had a non itchy rash all over my body -it is now confinded to my face - even my eylids have very fine little bumps. Sometimes I get a red ugly rash on my neck that looks a lot like high school hickeys. Try to explain that when you are in your mid 50's (smile). I also have the swollen eyes and puffy face. My eyebrows ( what is left of them) arched so high from the puffy eyes that i looked like Jack Nicholson playing the Joker. I've lost the color mostly in my feet but also my face and hands. But at this point I can't imagine any of my current symptoms that would make me stop the gleevec. I'm telling you all of this to say- while they are uncomfortable and not pretty these symptoms appear to be cosmetic. It is my understanding that less than 400 mg is sub therapeutic. If your blood levels are high enough I'd try to stay on the 400 mg. If your doc is not a specialist- see if you can't get some input from Dr. D or another specialist before you drop the dosage. Also I had my hem/onc prescribe the 400 mg tablet instead of the 4tablets at 100 mg each. Somehow one tablet seems to be gentler on my stomach which is my biggest complaint- the GI stuff( cramps,bloating etc.) Some say that drinking alot of water helps reduce the puffiness. I invested in some expensive cosmetics that is supposed to reduce puffiness- maybe its working or maybe I just got used to having puffy eyes-smile. Hang in there -there is a light at the end of the tunnel. Hey does anyone live in Nashville? I'll be doing the Country Music half marathon there in April. Chi # 1137 in the zero club --- Carol Hanson <chanson@...> wrote: > Hi Sharon... I've never had a rash from Gleevec.. it > is Jan who has the rash. Just wanted to clear that > up. Hope everything is going better for you now! > > Take care, > Zazzy > [ ] Gleevec Side Effects > > Greetings: > I am a newbie just having been diagnosed on > 12-31-07. I am on > Gleevec and have developed a rash. Also, I have a > swollen face and > puffiness around my eyes. I have always had a lot > of energy but do > have a lot of fatigue and can sleep right after I > have had a nap. > Any similar experiences and suggestions about what > to do about these > side effects? > > I have been reading this site for about three > weeks. I noticed that > some of your WBC figures were in the hundred > thousand levels. My > highest was only 47,000 and six months prior, the > WBC was in the > normal range. Is there any correlation between > higher numbers and > time it takes to reach CCR? > > What is your opinion about taking below 400 mg of > Gleevec? My onc, > due to the rash, has reduced my level to 100, > 200,or 300 mg? > > I enjoy the info and support that is exchanged on > this site. Reading > what you have to say is helpful to me. I found > that I live close to > Zazzy and look forward to meeting her. > > AndeJane > > [Non-text portions of this message have been > removed] > > a (Bobby) Doyle > Brecksville, Ohio, USA > DX 05/1995 > 02/2000 - Gleevec Trial/OHSU > 06/2002 - Gleevec/Trisenox Trial/OHSU > 06/2003 - Gleevec/Zarnestra Trial/OHSU > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > #840 - Zavie's Zero Club > 09/2006 - out of CCR > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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