Hi

I was initially diagnosed with a GIST in the jejunum part of my small bowel in Jan 2024, and had this removed in Feb 2024. It is a wild type GIST with no known cure so surgery and ongoing monitoring was the plan. Sadly in November 2024 I received the news that the GIST had spread to my liver and peritoneum and was now incurable. With no established treatments available on the NHS my consultant was able to secure compassionate access to Regorafenib, which I started taking in December 2024. Sadly in April 2025 it was clear from a CT scan that the treatment wasn’t working, as the tumours had grown aggressively, at this point I was given a prognosis of 6 months to live. Thankfully a short while later I was offered the opportunity to take part in a clinical trial, which isn’t specifically for GISTs but is a broader trial looking to treat solid tumours where no other options are available. I started the trial in June, it is too early to tell if this is working yet but I should know more in the coming weeks. I know it won’t be a cure but the best we can hope for is tumours shrinking or at least stabilising. 

I’m relatively pain free and side effects have generally been manageable, my main issue now is with sleep. I drop off to sleep ok but then it is very broken, as I’m waking several times in the night. Going to bed at 10pm, I’m lucky if I manage between 4-5 hours (going by my sports watch) It’s causing me to be severely tired during the day, I am managing 1-2 hour naps in the afternoon but still end up feeling ready for bed by 8am.

Does anyone have any tips? I really want to avoid sleeping tablets as I don’t want to feel drowsy or groggy.  Also I’m not laid awake worrying about my health I just can’t seem to manage any solid sleep.