[CML] Re: Terry in Texas

Sun, 04 Dec 2005 14:06:46 -0800

Lora, Everyone responds to Gleevec differently. The most important thing is to take it daily. I've been taking the gold pill for 2 years now and it took me well over a year to reach any form of remission, I did reach remission but lost it due to the fact that I did not take my gold as prescribed because I was so tired of my bones hurting, and feeling like I have the flu 24/7, and sick all the time. A lot of people can take the Gleevec and do well, no side effects much, still able to continue to work etc, but I was not one of the lucky ones. I have suffered with Gleevec side effects since the first day I took it. I am prescribed 600mg a day but I only take 400mg a day and I TRY to take 600mg at least twice a week, those 2 days of 600mg I can barely get out of bed. My doctor has told me the main thing is to keep it in my system. I just recently lost my mother and I was so stressed out, I could not eat.  For days all I could get down was a bowl of cereal and I took 200mgs of Gleevec after I ate. Terry's side effects may wear off after a period of time as most people do so tell him just to try to bear it and take the Gleevec faithfully. I have been on pain meds and muscle relaxers, and phenergan for the nausea since day 1. I don't have to take them every day but I do have them if needed. If he has a good doctor, he can get something to help relieve the pain, don't hestitate to ask the doctor for help with whatever side effects he suffers from. I hope this info will help Terry.
Love, Peace, Hope & Prayers, Pat (the slow moving turtle from TN)
--- In [email protected], [EMAIL PROTECTED] wrote:
>
> well, we got worse news today....they got the cytogenetics??? report back,
> and he is still producing leukemia cells. So, now they want Terry to bump
> from 600 mg to 800mg of Gleevec per day. The nurse was supposed to contact
> Novartis to get them to send more so he wouldn't run short before the end of the
> month
>
> Terry was disappointed, but fairly stoic.....we are now awaiting an appt
> with oncologist to let them tell all this in person. I now have my scanner
> hooked up, so that we can get a copy of the results, share it with this group, &
> hopefully somebody explain this all more simply.
>
> btw....a new member mentioned that her doc has said that many folks should
> reach remission after just 3 months of taking Gleevec. Is this the story for
> most of you?? Why I ask is that Terry has now been on Gleevec for a
> year...is "sickly", hurts from the bone & joint pain all the time, etc......so
> wondering if many of you are doing lifetime 800mg per day, or less for
> maintenance???
>
> Lora
>


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