Hi Rick.....I think that most people have some side effects from gleevec. I was on it for a few years, but didn't experience most of the ones that you've mentioned. I'm a 70 year old female who has had this CML for almost 10 years and have been on all of the drugs available. Gleevec has stopped working for me a few months ago, and am now on Tasigna. I am having very few side effects on this. On Gleevec the only side effects were diarrhea, which was hard to handle at times, but other then that, very few side effects. I found that things that you eat do cause different things. I couldn't eat tomatoes, and really love them. I really feel better on Tasigna, but have trouble with being motivated to do anything. I've always been able to get into my quilting and it gave me such peace. Now I push myself to do things, but still do them. I also was tired on the Gleevec, but am also on the Tasigna. I feel lucky to be alive, so try to deal with whatever comes along....It's not like we have a choice.
Hope that I've helped a little. We all have some issues, but some more then others. I enjoy belonging to this group as we can talk things out and be there for one another. Millie ----- Original Message ----- From: "ratbone" <[email protected]> To: "CMLHope" <[email protected]> Sent: Friday, May 29, 2009 6:41 AM Subject: [CMLHope] gleevec, its a helluva drug > > some of you many know the reference here, that is rick james. no > matter. this gleevec seems to be a potent but more important a > whimsical drug. i've been on it for about six weeks and am feeling > some of the side effects that you all here are reporting. at first i > thought i was lucky in that i had no physical problems. i took it > faithfully on an empty stomach with a big glass of water followed > but a large meal. no problem. it wasnt long however before i sensed > a difference in my mental state. i seemed to be in a fog some of the > time, maybe a little dizzy. this feeling became more pronounced over > time and i found that i had to take a nap to clear my head. i wasnt > tired just kinda bummed out, unmotivated. and getting back to the > snide after the nap took forever. i used to figure a half an hour nap > would take 15 mins to properly wake up from. with gleevec more like an > hour and half. but, still i would feel ok after this adjustment > period. lately it seems the fog is thicker than ever. no abatement. i > describe it to some friends as feeling like trying to alleviate a > medium sized hangover by smoking a little c grade weed and having it > very definitely not work out. to others i say its like driving in a > car, windows up, with a bit of an exhaust leak. one thing should be > noted. sometimes, and i cherish these, it is, as in the marijuana > analogy, mildly euphoric. > so a little background. i am 62 year old male who just kept feeling > more and more logy and weak for about a year until having abandoned > the possibility of a testosterone deficiency i finally was able to > exhibit a symptom that impressed my doctor ie a spleen the size of a > basketball. this lead immediately to a blood test where upon the > doctor called me and said you have leukemia. stop it say i. no you for > sure do. your white blood count is at 375,000. not being a medical > buff this meant little to me but later i found out i may have set the > local record on this. chemo followed and now my blood is normal and my > body is good to go. that angle/devil gleevec is keeping me alive but > messing with my mind. > long winded sob, eh? my question to those who have the experience > (and i have read deep into the archives and felt the emotion in some > of your reports and questions) is this. do any of you know gleevec > users who have no side effects? or people in remission from the dark > side of gleevec? seems possible to me that the only people who post > here are those who do have issues. it could be, my fingers crossed > here, that this group represents an lets call it unlucky group, side > effected gleevec users. one would like to think that over time one > would reach an accommodation with ones necessary drugs. naive i > suppose but still as in the name of our group its nice to have hope. > so let me hear some positive tales of eventual normalcy if such > exist. thank you for listening and perhaps shining a bit of light > here. rb > > > > -------------------------------------------------------------------------------- No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.339 / Virus Database: 270.12.46/2143 - Release Date: 05/30/09 05:53:00 --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
