You are here

Destiny trial - successful so far

Categories:

I haven't posted on here for years. But I thought it might be nice for others to hear and share some good news.

I started the trial 2 years 5 months ago, having been on Imatinib for some 11 years since my kids first birthday back in July 2003.

Everything has gone amazingly well. I was MMR within 3 months and undetectable for many months through the first few years until the tests got
more accurate and still in the "noise" levels as my consultant described it when detectable.

I maintained the response for the whole first two years on half dose, and so far, with 4 months of results off completely, still maintaining the same
levels. I also have to say, the first two years on half dose I felt great, and the last few months off completely feel amazing.

I'm under Andy Gorringe at Cardiff UHW - he has been brilliant throughout.

Good luck to any and all considering or starting the trail/discontinuing.

Hi there

Congratulations on great results.

I was a bit puzzled by your trial schedule though - I'm also on Destiny but for me (and I thought, everyone), it's been 12 months on half dose, then 24 months on nothing.  I will finish the trial at the end of April, when I expect to stay on nothing unless and until something odd changes. Are you on a variation of the Destiny schedule?

Any way you look at it, though, keeping zero on half dose and then nothing is good.

Best

Richard

Thanks for posting your update - it is very good to hear that your have managed to maintain TFR, and hopefully will continue to do so. It is also good to know that you felt so good on half dose TKI. I think that is a very good take home message for those who did not manage to get to TFR but did manage to keep their molecular response on half dose TKI. This may well be the future for some patients.

Sandy

Just read my post and realised I did actually mean one year on half dose. I have about another 5 months left to go on the trial off Imatinib. One very minor blip in the figures this month, but nothing to worry about according to the doctor. From 0.009 to 0.016 on the PCR - low I know but unusal for me though as thats the highest it's been for me throughout since acheiving early MMR. Will try and remember to post again at the trial end. Apart from knee/joint swelling when I first came off completely, I have been incredibly well throughout the trial. Feel very privileged and lucky too.

I had a couple of blips during the trial but they always went away, and some, when reviewed, were wrong anyway.  Most peculiar - my consultant said they may have been "artefact".

I end the trial in a couple of weeks. No bone marrow necessary....!!

Best

Richard

Thread continued from: 
DESTINY - Updates from those enrolled on the trial