Hi
I just a call from my doctors office saying that I have achieved CcYr ( .867 % in IS ) . He seems to be very happy with it .
What are my chances of progression ? Achieving MMR in 12 months ? Does this result influences my chances of having a normal lifespan ? I have been searching on internet but no specific info seen
Regards
Thomas
Hi Thomas,
Congratulation on a very good response- BCR-ABL at 0.8% (IS) is well below the ELNet recommended goal of less than 10% Ph+ at 3 months.
CCyR is normally considered to be 1.5% Ph+, so at 0.8% IS you are well into the 'realm of the molecular' and almost at MMR (0.1%IS) already, so you should feel very happy with this result.
Of course, everyone is an individual and the ELNet/NCCN goals and response rates can only be a general guide for the likely majority- but as far as anyone can be sure, if your PCR results continue to show this downward trend you can be very sure of living out your normal lifespan, at least as far as CML is concerned.
Should you maintain MMR or even lower, for the next few years (at least 2) you may well then be a candidate for the de-escalation/discontinuation studies (DESTINY) which, if successful, will mean that even more people will be able to achieve treatment free remission (TFR) or if not that at least a reduction in dose (with the hoped for reduction in side effects) and a better quality of life.
All in all you are showing an optimal response, try to relax and be positive for the future.
Best wishes,
I was diagnosed 20 years ago. Had a matched unrelated bone marrow transplant 18 years ago.
Went on Glivec when it was in trial 13/14 years ago and am still on it. I've had a good response and also after just 6 months. But in my case I have no intention of coming off it ;)
It works and that works for me. Appreciate though that when I went on it no one knew what would happen if you than came off it. So as it's never been a problem I'm in the group that's staying on it and seeing what happens.
I probably ought to say that I'm 63 now and fit and active. I have no doubt I'll die one day but heck in the meantime I'm enjoying living and as far as I'm concerned Glivec / Gleevec / imatinib is a wonder drug and I'm testament to that :)
Thank you... I do feel very fortunate in having great treatment and a measure of good luck.
Following the BMT everything was seemingly going good and I also thought it was curative.
Then I took part in a trial of testing utilising Polymerase chain reaction and I think some chemical testing as a diagnostic tool and which could check at levels that hadn't been able to be checked previously.
And that's when it was realised that I had 'trace elements' and so having just spent a fortune on a BMT I think it was a case of can't waste all that money so I went on to the Glivec trial.
