Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Hi Sharon---Who is your son seeing? ________________________________ > > From: S@... > Date: Thu, 4 Sep 2008 23:29:00 +0000 > Subject: [ ] Sprycel? > > > So after almost 11 days on Gleevec my son's doctor is changing his med > to Sprycel due to tolerance issues skin rash on feet, legs, hands, > arms. He's also been having some other side effects as well. I have > the upmost faith that his doctor knows exactly what he's doing because > he's one of the top CML doctors in the country from what you all tell > me, but is this normal so soon. I'm afraid maybe we should have > waited a little longer to see if rash subsides (I have not seen the > rash as ie's been away at college). I'm afraid because we're are > already moving to the new generation drugs so soon. He's 18 and > dealing directly with the doctor so I can't voice my opinion or > interfere, I just have to have faith and trust. Any thoughts? > > thanks, > > SharonT (Northern California concerned Mom of newly diagnosed 18 year > old with CML) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Dr. Neil Shah, UCSF > > > Hi Sharon---Who is your son seeing? > ________________________________ > > > > From: S@... > > Date: Thu, 4 Sep 2008 23:29:00 +0000 > > Subject: [ ] Sprycel? > > > > > > So after almost 11 days on Gleevec my son's doctor is changing his med > > to Sprycel due to tolerance issues skin rash on feet, legs, hands, > > arms. He's also been having some other side effects as well. I have > > the upmost faith that his doctor knows exactly what he's doing because > > he's one of the top CML doctors in the country from what you all tell > > me, but is this normal so soon. I'm afraid maybe we should have > > waited a little longer to see if rash subsides (I have not seen the > > rash as ie's been away at college). I'm afraid because we're are > > already moving to the new generation drugs so soon. He's 18 and > > dealing directly with the doctor so I can't voice my opinion or > > interfere, I just have to have faith and trust. Any thoughts? > > > > thanks, > > > > SharonT (Northern California concerned Mom of newly diagnosed 18 year > > old with CML) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Hi Sharon, I must admit, that's pretty fast to be considered intolerant but now that there are so many drug options available I guess doctors don't see a need to work around patient's side effects anymore. In the " old days " , rashes were dealt with and could be managed in the majority of cases. Some took Benadryl, others hydrocortizone and some needed systemic steroids. For most people the rashes went away and never came back but a few people had a miserable time with them and were forced to change drugs. In those days, when Gleevec was the only drug, doctors had no choice but to deal with the rashes but I guess in this day in age, with so many options, there's no need to play the trial and error waiting game with Gleevec. There are lots of people on Sprycel and I can't think of any who had the rash while on Spyrcel so your son should do just fine. Take care, Tracey > > So after almost 11 days on Gleevec my son's doctor is changing his med > to Sprycel due to tolerance issues skin rash on feet, legs, hands, > arms. He's also been having some other side effects as well. I have > the upmost faith that his doctor knows exactly what he's doing because > he's one of the top CML doctors in the country from what you all tell > me, but is this normal so soon. I'm afraid maybe we should have > waited a little longer to see if rash subsides (I have not seen the > rash as ie's been away at college). I'm afraid because we're are > already moving to the new generation drugs so soon. He's 18 and > dealing directly with the doctor so I can't voice my opinion or > interfere, I just have to have faith and trust. Any thoughts? > > thanks, > > SharonT (Northern California concerned Mom of newly diagnosed 18 year > old with CML) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Hi Sharon, I was on gleevic for two weeks and then changed to Sprycel. I had to change because the swelling and rash. Do not be alarmed. I was dx'd April 2007 and was given 6mths because I was already in the blast crisis.. But as you can see I made the sixth month's and even gained full remission last month. Sprycel in the beginning for me I took benadryl and anti-diarrhea med. The headache were tremendous but eventually subsided, would come on and end before I could get my hands on my head. But most of the side effects went away with time. Still have joint pain but not like in the beginning. Have heard many on here say the pain was the medicine's killing the cml cells. Concentration (Chemo brain or brain fog) is a problem if I am stressing, but you learn to not stress and to have only one thing going on at a time. Like ADD, and some on here take something for the ADD. You and your son are always in my prayers. God Bless you both Anita [ ] Sprycel? > > > > > > So after almost 11 days on Gleevec my son's doctor is changing his med > > to Sprycel due to tolerance issues skin rash on feet, legs, hands, > > arms. He's also been having some other side effects as well. I have > > the upmost faith that his doctor knows exactly what he's doing because > > he's one of the top CML doctors in the country from what you all tell > > me, but is this normal so soon. I'm afraid maybe we should have > > waited a little longer to see if rash subsides (I have not seen the > > rash as ie's been away at college). I'm afraid because we're are > > already moving to the new generation drugs so soon. He's 18 and > > dealing directly with the doctor so I can't voice my opinion or > > interfere, I just have to have faith and trust. Any thoughts? > > > > thanks, > > > > SharonT (Northern California concerned Mom of newly diagnosed 18 year > > old with CML) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Thanks, Sharon. I was thinking that your son might be seeing Dr. Mauro, whom my son sees. My son has been on Sprycel for the past year, after having been on Gleevec for eight years. He actually has fewer side effects on Sprycel....he also had very pale skin on Gleevec and alot of edema around his eyes..but now he looks much better. On both drugs, he has been able to live a normal life. He actually lives in San Francisco and works on Sansome St. but has been treated at OHSU since 2001. Both doctors...Mauro and Shah... are at the top of the field. Best wishes to you...Rosemary from Salem, Oregon ________________________________ > > From: S@... > Date: Fri, 5 Sep 2008 00:35:12 +0000 > Subject: Re: [ ] Sprycel? > > > Dr. Neil Shah, UCSF > > >> >> >> Hi Sharon---Who is your son seeing? >> ________________________________ >>> >>> From: S@... >>> Date: Thu, 4 Sep 2008 23:29:00 +0000 >>> Subject: [ ] Sprycel? >>> >>> >>> So after almost 11 days on Gleevec my son's doctor is changing > his med >>> to Sprycel due to tolerance issues skin rash on feet, legs, > hands, >>> arms. He's also been having some other side effects as well. I > have >>> the upmost faith that his doctor knows exactly what he's doing > because >>> he's one of the top CML doctors in the country from what you all > tell >>> me, but is this normal so soon. I'm afraid maybe we should have >>> waited a little longer to see if rash subsides (I have not seen > the >>> rash as ie's been away at college). I'm afraid because > we're are >>> already moving to the new generation drugs so soon. He's 18 and >>> dealing directly with the doctor so I can't voice my opinion or >>> interfere, I just have to have faith and trust. Any thoughts? >>> >>> thanks, >>> >>> SharonT (Northern California concerned Mom of newly diagnosed 18 > year >>> old with CML) >>> >>> >>> >> > > > Quote Link to comment Share on other sites More sharing options...
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