I have started on this trial(in Jan)due to Glivec intolerance. Dose 8oomg,400mg twice a day.
After fighting for Glivec in 2001 - 2002, alongside so many others who are early members of this forum, I started on Glivec in Feb 2002. Although initially my response was good it never reached a stable zero, my counts wobbled so much over the last two years I was in danger of loosing my response. The worst part of glivec for me was the side effects, they were just terrible.
So far my side effects on Nilotinib are very much better than on glivec. The biggest visual plus is that I have lost the oedema I was suffering with on glivec. My face is back to near normal - no more swollen eyes or white 'panda' markings. The bloating has gone and I have dropped a whole size in clothes - without trying! For me the worst oedema was on my legs which were the size of tree trunks and very painful. This edama is also disappearing.
On the pain front AMN is suiting me much better - the pain levels are about half those I had before. The diarrhoea and nausea have gone, instead I have constipation! At first the nausea on AMN was bad, but now I have settled into the fasting routine that has almost gone.
I have got a strange rash, that again is nowhere near the one I had on Glivec, but it is being monitored.
The very best part is that I feel like myself again, my head is clearer and I can think straight, also the fatigue is much less.
So far this seems to be a good switch for me.
As you will all see from the earlier post from Sandy there is a problem for many people in getting Nilotinib or Dasatinib. It looks as if there will need to be another campaign to gain the NICE appraisal for these drugs. It will also mean fighting to get those people who desperately need an alternative to Glivec a chance to have these newer drugs before NICE approval.
Can I urge you to write to your MPs on this matter.
Pennie.
