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To Trey (& anyone else on 200 mg gleevec)

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#1 KathyF


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Posted 23 November 2012 - 08:03 AM

I've been on 200 mg gleevec for over a year now.    PCRU for many years.    Diagnosed nearly 10 years ago in early stage on CML -- and got into remission quickly on 400 mg gleevec.     My side effects have lessened on 200 mg which has been nice.     So, now I'm wondering about stopping gleevec completely -- if lessened side effects are nice -- no side effects would be awesome.    But this is a big decision.

I believe you are on 200 mgs -- and my question is do you ever consider stopping altogether?    If not, would you mind sharing your thoughts with me?

Thanks -- I appreciate your help.     And anyone else's opinions are certainly welcome!   


#2 Trey


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Posted 23 November 2012 - 07:09 PM

I was diagnosed in 2005, PCRU early 2006, reduced to 200mg 2009.   There is no doubt that I could likely go for over 2 years without taking drugs and remain PCRU, and probably longer.  If I lost PCRU status, I believe I could regain PCRU.

Drug discontinuation has only been done for less than 3 years so far.  For those who still remain PCRU after a couple years, they could relapse after several more years.  And they will live with a sword of Damacles hanging over them. 

But I do not stop for one reason.  By remaining on the drug I believe the odds of an actual cure is more of a theoretical possibility. 

#3 KathyF


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Posted 24 November 2012 - 07:08 AM

Thanks, Trey, for your response.    

Here's hoping our cure comes along sooner rather than later.

all the best,


#4 GerryL


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Posted 24 November 2012 - 07:58 PM

Hi Trey,

They must have started some of the STIM trials earlier in Australia. I received an Australian Leukemia Foundation CML newsletter for 2011, there were a couple of articles in there for people who have been off Glivec for 4 years and were still negative when the article was published.

My doc is also anti 200mg, but I'm finding that even the 300mg is impacting my muscles and tendons, so I'll start getting him used to the idea of me stopping next October.

I've got a friend here who is on 200mg Glivec and MMR, her life (side effect wise) has improved dramatically from the 400mg Glivec and she is happy to just stay at MMR.

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