Just posting after my visit yesterday to HH after stopping the Glivec in March.
My last PCR (taken end of June) was still undetectable. My hopes are rising now. HH said they were cautiously optimistic. The crux of the matter is that 50% of people relapse and although my PCR has been undetectable for almost 3 years now, HH pointed out that they do not know how deep that really was. It may be that the CML may come back at a much later date, depending how many CML cells I still have (it only takes 1 I suppose). But as HH said the longer I go the better things look. They will never tell me it has gone, but it may well be a very long time (if ever) before it comes back.
Interestingly, I have had 2 large eye bleeds in the last 2 months since coming off the Glivec, these gave me cause for concern, but apparently both my GP and HH are not concerned and say it is just a nuisance and nothing to worry about.
To my surprise my WBC has only reached 4, and both neutrophils and platelets are also at the bottom end of acceptable. I thought these would have returned to more mid range by now, but HH are not worried about anything. They also laughed when I pointed out my disappointment that the excess weight ( about 1.5 stones) I gained with the Glivec did not come off as easily as it went on. This is obviously something I need to work on (eventually!!!!!)
Things are looking good at present and I am not looking too far ahead, fingers crossed though.
