Just had my 24 month PCR result and I am stuck at 0.16% (or 0.116% it was a phone call so not sure now) was at 0.118% in October last year. I am on 600mg Nilotinib but will increase to 800mg if my mutation screening comes back negative or I’ll switch drugs if positive once they have that result. Difficult to know what to think anymore 6 months seems a long time to be stuck and surely it would have got me into MMR by now. I see a lot of you reached it at 24 months with similar high sokal scores. I realise not hitting MMR at 24 months on imatinib is seen a lot but surely not a 2nd gen like Nilotinib?
Its very worrying but my consultant still doesn’t seem concerned and said I am stable and not to worry.
How long is long or slow to reach MMR I need some kind of hope as it’s so draining and upsetting to live in such limbo of continued uncertainty. And never having any kind of closure is soul destroying to say the least.