5 replies to this topic

[gerry]

Treatment-free remission, or stopping treatment in stable long-term deep molecular remission, has probably been the most reported topic at this year's ASH.

The European Stop Tyrosine Kinase Inhibitor study (EURO-SKI), being the largest ongoing STOP study, has just completed recruitment of 700 participants. An interim analysis of the first 200 patients from 8 European countries with a follow-up of minimum 12 months was now presented. The study aims to define prognostic markers to increase the rate of patients in durable deep molecular response after stopping TKI treatment, evaluation of molecular monitoring procedures, and the assessment of quality of life.

http://www.cmladvoca...-free-remission

[Trey]

The data seems to confirm over and over that there is a little better than 50/50 chance of successful TKI stoppage.  But some of those successes include detectable levels of disease.  Hopefully we will get more detailed data from these ongoing studies which are more predictive of who will succeed.  The real issue is understanding why exactly some people can stop and others cannot, and what drives this phenomenon (beyond just guessing that the immune system figures out how to do this somehow).  Is it possible to exhaust the long term, high level leukemic stem cells so that they die off?  If so, it seems to occur over a rather long period of time.

 

For instance, the Korean KIDS study "concluded that both duration of deep molecular response and Imatinib treatment were the most important predictors for successful therapy stop."  The long term PCRU status before stopping TKI therapy makes sense, but this study also concluded that Gleevec treatment is better for a long term relapse free TKI stoppage???  I would suggest that the other TKI drugs might not have not been used long enough yet.

 

It is useful to note that "While most relapses occurred very quickly (median 3.7 months), one relapse occurred 24 months and one 37 months after stopping treatment."

[gerry]

I'm not sure if there is an end date to the high level cells, hasn't there been people on the forum who have had CML pop up again after 9 years or so and they've had to change TKI?

 

I had thought of eventually being able to shift my testing out to six monthly again, but not sure about it due to not knowing what the speed is of the return of CML for people outside of the first six months is. Does it return to its original slow speed or does it return fast as in the first six months? My doc wants me to continue with 2 monthly testing, but I will eventually get hime to agree to three monthly down the track.

[CallMeLucky]

There is another variable to those who relapse. Since we don't know how people get cml there is an argument to be made that they could be "cured" and then get it again.
I now that seems less likely but since it seems the pros are guessing I figured I would throw my guess in too!

[scuba]

I will test the theory. I have been long term MMR and just recently (3 months ago) became "undetected". I just had a bone marrow and PCR test taken and should know the results next week. I am assuming I will either be "undetected" or will bounce above minimum within the margin of error. I am deciding whether to stop Sprycel (20 mg.) and test again in six weeks to see if I stay the same after I get my results. And to continue this approach if my tests come back negative for CML.

 

I believe that 9;22 transcription error (bcr-abl) occurs generally in the population and that those of us who develop full blown disease are the ones whose transcription errors got away from us. Getting it under control may all that was needed for the 40-50% who stop TKI with success. 

 

This is very important.

 

As many as 50% of us in deep MMR or CMR ("undetected") could stop TKI therapy with success. That's one out of two! And that for those who do relapse, all they had to do was re-start therapy and regain their response. I know of no study that showed a single case where stopping TKI therapy, and then re-starting therapy failed to recover response. Not one.

 

So the risk is very small. Like zero. One has to stay vigilant and keep testing. But to live TKI free and to be monitored is certainly preferable than taking a drug that interferes with normal Tyrosine Kinase and affects all kinds of our body systems leading to fatigue, muscle weakness, liver issues, skin issues and in Trey's case, mental issues.

 

Merry Christmas

 

p.s. Trey, just kidding, your mental issues pre-date your taking Gleevec.

[gerry]

I'm glad I talked my doc into letting me have a go at stopping, mind you he now has his own little trial group happening. 

 

I'm not sure that I would think I was cured for a long time.  Maybe in 10 years time if it hasn't resurfaced I might consider that those darn high level cells have ceased to exist.