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Slow Coach!!!

Hello All

I'm now getting concerned about how quick or should i say how slow my CML is reducing, i had the results back from my BMB which shows i'm 35% PH+ this is after taking Glivec 400mg since June 2006. (BMB done Jan 2007)

Also pcr results showing Dec 2006 = 21% , Jan 2007 = 17% and Feb 2007 = 15.9% , my consultant said even though i am responding it is a possibility that i'll have to up the dose to 600mg if the the results don't get better in the next 2-3 months.

My intial reaction is Oh God am i going to be one of the few Glivec does'nt work for or stops working before i get near the 0% mark?

Am i getting worried to soon or should i expect to have the dose increased?

also have any of you found that shaking things like a common cold or cough are a struggle, had me a cold now for 4 weeks!!!

But still very grateful for what glivec has done/doing for me and hope to get in that zero club soon!!!

Best Wishes to you all.

Hello!

Just read your post and thought I'd reply seeing that I've gone through a pretty similar situation...

I was diagnosed in Oct 2005 and went straight onto 400mg Gleevec, my first PCR was 28% and after 6 months it'd gone down to 14% - we are just called the "turtles".

I then was increased to 600mg because of slow reaction times and dropped to a PCR of 7% and my 1 year anniversary finally showed a 0% BMB. I still haven't got down to the goal of 0% PCR. I am now at 2.6% PCR and have been increased again to 800mg...I'm not worried now as I know there are many others who are also slower than others to get to 0%. Try not to worry yourself about all the results as Gleevec is a brilliant drug and there are many other new forms of medication for CML getting tested all the time.

As for cold, flu, etc...I was also like that at diagnosis, since then I've eaten very well - lots of fruit and veggies (all organic) and I drink 3 litres of water every day. Touch wood - I've been cold and flu free for well over a year.

Take it easy and good luck with the treatment! MJS

Hi - just to say I was dx over 3 years ago and had similar experience to your in the first year. It seemed that everyone else was reaching CCR in a few months and I was not - had all sorts of theories why I was going to be one of the ones Glivec did not work for. I was 100% ph+ at dx, 80% at 3 mths, 85% at 6 mths (v depressing!), 35% at 9 mths and CCR by the end of the first year all on 400mg Glivec. Since then ccr maintained and PCR wobbles a bit but stabilized around 0.5. So, some people do take longer than others - do not be disheartened. Seems reasonably common now to increase the glivec dose - this was never an option for me as my counts were already low on 400mg - certainly something to discuss with your consultant but seems no need to rush into it. Hope this helps
Annie
P.S. Know there are lots of other turtles out there - any other experiences to add?