Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Diane, You have no idea what a smile I had when I saw you had rejoined....hellllllooooo! I have long wondered how you are doing...and I know you well know how those of us both before and after can make up the most amazing stories in our heads about people that we are not hearing from. I am so glad to hear you are doing well. Have you been back for any post op check ups yet or have you been holding off? Before you know it you will be at your one year anniversary....good for you. What ever happened with your house...did you end up moving after all? If so have you begun to make new friends? I recall you were feeling like if you moved you wer going to be a bit disconnected from your family. Anyway...I am so glad to hear things are going well and that you are standing tall and living your life. I look forward to catching up with you in the coming months. Best to you, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 : Welcome back....but I doubt you really left us. I wanted to know about your side effects with Sprycel. You mention the shortness of breath and the neuropathy in your fingers. Is there any thing else? Did you have any GI side effects with Gleevec and if so, did they persist or subside. Matt ville, FL Gleevec Tasigna Father of 3 **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 welcome home. Chi --- seloew12 <seloew12@...> wrote: > > Hi Everyone, > > I've been MIA for awhile because of circumstances > including the hacking > then rebuilding of my computer. I was formerly > loewen1 and this is my > new email address. > > I'm on the Sprycel trial at University of land > Hospital's Greenebaum > Cancer Center and was doing so well (CML > non-detectable in every way) > then suddenly, about 2 1/2 weeks ago my breathing > became labored walking > upstairs or for walking any distance at all. > Neuropathy attacked my > fingertips overnight and I coulldn't type or write > until my onc > immediately took me off dasatinib for two weeks. > Time to start on my > 100 mg to test side effects is tomorrow. In the > interim the neuropathy > has eased and I get another chest xray tomorrow to > see if the fluid that > was there is gone. All the fluid feels and looks > like it's submitted to > gravity and my feet and ankles are balloons. > Crossed fingers for any > side effects that may appear are minimal so I can > keep my dosage where > it is and continue the trial. But, of course I'm > thinking of options if > dasatinib proves to be too toxic for my system. A > CML specialist and > researcher I know in London brought up the > possibility of nilotinib > (AMN107, I think). > > So, it's been a stressful time and I am very glad to > be back in this > group to communicate with my fellow cml warriors. > > All the best, > > L > > > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 HI Matt, I started taking Gleevec in 2001 right after my diagnosis. Although I started on the usual 400 mg that left me with only a teeny response so my dosage was doubled to the maximum of 800 mg within the first 6 months. I slowly reached the coveted 0 in 2002 during a clinical trial where I tried a vaccine. But, it wasn't the vaccine that worked (for no one else either) it was the double dose of imatinib. With that came more side effects, of course including (in 2004) two stomach bleeds which led to a colonoscopy and an upper GI scope which showed the bleeds. The doc had me on Protonix for as long as it took (can't remember how long) to stop the bleeds. During a short amount of time I had lost my response to Gleevec and my onc in Bethesda, Md immediately had me call Bristol Myers Squibb to find a clinical trial for dasatinib and I was accepted to the trial at the University of land Medical Center. Now I'm having problems with Sprycel and am off the drug until the xray I got today gets read next week. Anyway, I can tell you that protonix worked and I don't know that it was any indicator of my loss of response to imatinib. L Re: [ ] Rejoining the group : Welcome back....but I doubt you really left us. I wanted to know about your side effects with Sprycel. You mention the shortness of breath and the neuropathy in your fingers. Is there any thing else? Did you have any GI side effects with Gleevec and if so, did they persist or subside. Matt ville, FL Gleevec Tasigna Father of 3 **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
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