I have only been on Gleevec for about a year and while it has had some side effects, it has controlled my WBC. At first my skin broke out to the point I had to stop taking it. I started taking it again with the help of a dermatologist. My skin is doing better, but my lips are always chapped so I keep some lip balm handy at all times. I have experienced cramps in my legs, feet, and hands, but nothing unbearable. I once enjoyed spicy food and can still eat some, but I can no longer eat jalapenos and only very mild picante sauce. My voice got lower in pitch, but I learned to sing in different keys. I was very fatigued at first, but I now have much better stamina. I learned I can tolerate alot of things and that living with CML is better than dying from it. It frightens me to think that Gleevec could someday stop working for me, as some have testified here. I learned to live with Gleevec and feel my body is more accepting of it now than a year ago. I even joke about the skin problems and lower voice as "just going through puberty".
Perk in Texas On May 29, 4:41 am, ratbone <[email protected]> wrote: > 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 --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
