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Hi all. That's me back on 400mg glivec after 12 months on half dose and 3 months on zero dose. Pcr held steady on half dose at around 0.005% on the international scale. Quickly rose on zero dose to 0.227%. Settling back into 400mg and not enjoying it  but my body will get back used it it I'm sure. 

Is there any chance that your consultant would allow you to stay on the half dose, if that was working well for you?  

Although I am not on the Destiny trial, my consultant has put me down to 300 mg of imatinib, and I can feel the difference.  Although I still have the side effects, they are less frequent and less severe than they were on the full dose.  It's still early days for me (just coming up to 6 months), but he thinks I should be OK in the longer term.  

Olivia

Hi David, really sorry to hear that you have had to come off destiny, sure all will go well and numbers will fall away again quickly. All the best and keep us posted   Nigel 

I've only just seen this post today.    I'm SO sorry that you've not had the results you would have hoped for.   I'll be really interested in knowing what your response is now you've gone back on the drug.   I bet you're thinking "not half as much as you are"  ;)

I've just completed my year on half dose in the trial   (well it's actually 13 months while I await the final result and decision).       When I was at the hospital the last couple of months I've asked if they had any high level metrics with regard to the "early adopters" and specifically to say how many started, how many stayed on half dose till end of the year, how many went on no dose, how many then regressed, how many went back on medication and after how long and what happened in terms of their counts then.

I got told there was nothing I could be told..........    so I continue to keep an eye on this forum to get first hand feedback from other "Triallers". 

Just to update re destiny. My results are not good enough (having the 3rd blip of 0.1%pcr in month 11) to come off meds altogether. Decision taken with consultant in clinic 2 weeks ago. Whether i stay on 200mgs imatinib or have to go back to full dose i am waiting to find out (now in month 12 on 200mgs),

Also, on cml day, sept 22 I fell and broke my right humerus (upper arm)after my keep fit class - yes i have to laugh. Feeling a wee bit fed up all in all! excuse typing - no good with my left hand.

Good luck to you, darley, and everyone else as you come off meds. keep us posted...

best chrissie

Oh dear you have had a bad time!     Glad you can still see the black humour and there is something VERY ironic about breaking your arm at "Keep Fit".     

I'm very sorry to hear you've not been able to get off the meds.

I've got to say that it does worry me that there seems to be quite a few who are not maintaining good results.   It makes me wonder about whether or not I'm doing the right thing on the DESTINY trial.

I hate the name of the trial!   I've said before that whoever called it that wants a slap on the back of the head! 

I'm hoping Sandy might do a pinned post whereby folks awaiting their DESTINY might report how they're doing so we can all be better informed and get a picture of what this indicates.