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 8pm.
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 periods of sleep. This has mainly happened for the last 2-3 weeks. I am due to see the clinical trials team tomorrow so I’ll mention it then, but just looking for any advice from anyone suffering with similar issues. Thanks.
Hi SJB2006c3f574 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
Struggling to sleep must be very wearing and if you don't get any replies here, it might be an idea to also post in the living with incurable cancer group, which I can see you've joined.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
