You are here

STIM - any stories?

Categories:

Hi all

 

Ages since I've posted as the CML is just something that is there now, nothing to worry about.  My PCR results for the last few years have been 0.00 to 0.02, with the last 5 results all 0.00.

Speaking to my consultant this morning and I asked if it was possible for me to come off Imatinib and he said there should be no problem, but of course stressed there would be more regular check ups and if there was any sign of it coming back, I'd need to restart Imatinib.

I'm 38 with a young family and was original diagnosed in October 2010.  My reasoning for coming off Imatinib is to try and get rid of the Glivec fog (or is it just being a bloke that my attention span isn't great when my wife is talking to me wink) and also there is still concern about long term gastro issues that I have.  My lifestyle is active and I'm preparing for my latest charity challenge of the Rat Race Dirty weekend, 20 mile, 200 obstacle race in May surprise.

Has anyone come off Imatinib and what was your experience.  How did/is it going?

 

Thanks!

Hi there

I was diagnosed in 2009 at 42, with two young children at the time.  My PCR quickly became essentially zero so when the trial became available, I was one of the first Hammersmith patients to go on DESTINY in 2014 (patient no 2 there I think..).  I had been PRCU as they used to call it for about 4.5 years.

DESTINY went well and I have remained "PCRU" - I have had three or four blips in that time, meaning results of 0.002, 0.003 or 0.004, including one last November of 0.004 but latest is 0.000 again (found that out today which is always reassuring..).  The blips are almost certainly not real results. 

So DESTINY/coming off imatinib, has worked very well for me.  The protocol was a year on half dose with monthly monitoring, a year on no dose with monthly, then a year on no dose with two monthly. Since finishing last May I have been on no dose with three monthly monitoring, which may shift to 4 next time.

If you have had a good history as far as PCR goes and a good haematologist to keep an eye on you, this looks like a good option. There is a growing body of data and evidence which will inform decisions for people who have good responses.  Obviously the family concern would come first I imagine but experience seems to be that even if you experience some form of "relapse", the TKI you were on will restore your position quickly.  My consultant said if it happened to me, they would restart imatinib sooner than the protocol given how good my response had been - which I was pleased to hear - but fortunately I have been able to stay off.

good luck with the Rat Race. Since being diagnosed, and in particular since reducing imatinib, I have become much more active and now run three or four times a week, and am running my second marathon in April.  I'm extremely grateful for imatinib and everything that led to it, and the other TKIs, but happy I no longer need to take it (long may that continue).

Richard