Hi All,
It's been a while since I posted as we've been recovering from the campaigning frenzy of earlier this year (fingers crossed that comes good in the end despite all the delays).
As some of you will know, Jed has now switched from glivec to nilotinib. Much improvement with side effects, although still waiting for enough time to have passed to get meaningful PCRs.
Anyway, I just wanted to ask if anybody knows how critical the "no food" rule is when taking nilotinib. We were told that the reason you have to take it on an empty stomach is to do with the absorption rate but are unclear on the degree to which this affects it. Every now and again Jed accidentally eats something, usually just a couple of bites before remembering that he was supposed to be fasting before taking his meds. So we reset the clock and the fasting begins again. Not so much of a problem for his morning dose, but if this happens in the evening it can mean he has to stay up very very late to take his meds, therefore doesn't sleep enough, therefore is exhausted the next day (and the general fatigue he has is bad enough without sleepless nights adding to it).
So I guess what we are wondering is, if he literally has only had a tiny tiny bit of food, is this serious enough to warrant restarting the two hour countdown to drug taking (and bedtime)? We're going to talk to his consultant in a couple of weeks but any insights in the meantime would be appreciated.
All the best to you all, Bhiru