DESTINY: I'm hoping Sandy will pin a post so we can gather information at early stage and learn how drug de-escalation is working and see whether it's going to be a real possibility for those who have been on imatanib for a long time and achieved good results.
Not just during the trial phase but after trial and beyond. It would be most interesting to know if imatanib is a "cure" rather than a remission. Well a cure as far as "detectable" can indicate with current testing and which sounds good to me.
I'm at hospital on Wednesday and anticipate/hope that following confirmation of my last result (which was taken last month) and an overall review that for the first time in over 15 years that I'll be off glivec. :) Then in the fullness of time I'll be able to answer your question fully. It's one I want to know the answer to as well.
Prior to this trial I was in previous trials. Lots of them! But specifically for imatanib and for the blood tests and hence already having checkups frequently. For nearly 15 years my results have always been bobbing around between "undectable" and 0.003.
Then Since DESTINY
Month 1 - 0.003
Month 2 - 0.000 (undectable)
Month 3 - 0.001
Month 4 - 0.000
Month 5 - 0.001
Month 6 - 0.001
Month 7 - 0.000
Month 8 - 0.001
Month 9 - 0.000
Month 10 - 0.000
Month 11 - 0.000
So put simply: For me, so far there's been no difference whatsoever being on half dose than there was when I was on full dose.
In terms of "Case History" in the same spirit as the opening post. Diagnosed 1995. MUD bone marrow transplant 1996. Then on clinical trial to develop the current blood testing with the polymerase chain reaction based qualitative test. Then a few months with a "Oh heck! what does this mean" then on trial for the game changer - Imatanib An immediate result in one month. Bobbed between undectable and 0.001 for the first year. Had discussion way back then with consultants managing the trial about "what next" and because in those days I was in the land of "no-one knows". Decided to stay on the drug because:
- I was doing well on it and having been diagnosed in the old days I'd had years of VERY poor health and months of hospitalisation and a lot of complications and opportunistic infections etc and some horrendous treatment. Now I "just took a tablet"
- It wasn't approved at that stage. It sure as heck wasn't even considered let alone funded by the NHS. Cancer and Leukaemia research had approved and funded it for me and we were concerned that if I came off then I might not get the opportunity to go back on it if my results changed
- There was still a lot to be learned. (about the pcr tests and also about the long term implication of staying on imatanib)
- The risks coming off outweighed the benefits of staying on.
Edited to add more recent results:
Month 12 - 0.004
Month 13 - 0.000
Month 14 - 0.000
Month 15 - 0.000
Month 16 - undetectable :)
Month 17 = Undetectable
Month 18 = Undetectable
Month 19 = 0.001
Month 20 = 0.000
Month 21 = 0.003
Month 22 = undetectable
Month 23 = 0.001
Month 24 - undetectable
Month 25 - undetectable
Month 26 - undetectable