Hi everyone.
My mum's just had her second cycle of Ipi / Nivo two days ago having taken a break for a week of steroids to sort out some mild diarrhea. She felt very poorly for about a week and a half after her first cycle, had the stomach problems, plus bad fatigue, fever - all reported to her team and all eased off again. Her consultant suggested that a bad tummy as a side effect can often indicate an early response, which has given us all a new burst of hope (although it seems ridiculous that we're now hoping she gets diarrhea, Mum included). She'd also lost her appetite for months but that slowly seems to be coming back - at least, she's eating more foods now that she said even just a week ago were making her feel sick.
All this makes me really hope that the treatment is working, but I've noticed that my mum seems to be very sleepy at the minute. She's napping a lot in the days, and it's starting to worry me that that's a bad sign. I was wondering if anyone else had this as an immunotherapy side effect?
Thank you so much to all the stage four patients (and relatives) posting updates on side effects and positive outcomes. It's been so useful to read and compare, and my mum loves hearing stories about people who have come through the other side of this awful experience.
