Advanced GIST

Hi, I had to reply as you have a similar situation to my husband. I’m so sorry you’re experiencing this too. Bit of background - like you, fit and healthy, no symptoms, had sudden pain Oct 2024, emergency dash to hospital followed by emergency surgery. After months of waiting and frustrating delays we found he had a ruptured GIST tumour, prescribed Imatinib and told it is ‘life limiting’ 5-10 years, as it had started to spread - he has small tumours in peritoneum area plus liver. Told inoperable and incurable. Now on 3 monthly CT scans plus now also liver MRIs to track the liver tumour. Imatinib seems to be stabilising it all for now but life is a rollercoaster. He had just turned 60 when he had the op and we’d already had a crap year as our 22 yr old daughter needed urgent treatment for an eating disorder and so had been a day patient for 9 months at a psychiatric unit. 
Anyway, I’m a researcher so have gone into research mode since his diagnosis, while he prefers to know nothing, that’s another story. I hope you have found the charity GIST UK, they have a helpline and also chat groups via email, where people can ask others lots of questions. There is also a Facebook page called UK GISTERS set up by GIST patients, it’s very supportive. Having never heard of GIST before, I know it’s a shock to be given this sort of diagnosis - no one else has heard of it and the uncertainty of prognosis makes it difficult to deal with. It must be so hard for you as a young mum with 3 children. One thing the charity GIST UK do strongly advise is to make sure you’re treated by a GIST specialist hospital - they have lists on their website. 
All the very best to you. 

Thank you for your supportive reply. I had never heard of GIST either. I was offered clinical trials at the Royal Marsden hospital, but I was put off by the travelling etc. However, they were very supportive, and met with my oncologist, advising a lower but continuous dose of sunatinib. All I can do is physically and mentally fight this , by eating healthily and continuing to stay active, cycling when I can and getting outdoors. 

I will look at the GIST uk chat group too. Thank you for your advice. 

I’m glad you’ve been getting good advice from the Marsden, I understand about the travel issues, I guess it’d depend how much you’d need to go there or whether you could be monitored by your own oncologist. I went to a GIST UK meeting in London last October and the Marsden GIST specialist gave a talk, and mentioned how doses of the drugs can be tweaked so it sounds like that’s been done for your current drug. I know you probably know this already but there are other drugs available as third line treatment too. I assume you know which mutation you have, my husband is EXON 11 which is the most common but there are others too, which affect with drugs are used. GIST UK have a really good booklet called GIST for Beginners which covers all this stuff if you haven’t seen it. 
Well done for keeping fit and healthy, I’m sure that helps physically but also mentally, and if it helps I’ve seen several people outlive the timeline they’ve been given, because the drugs work better than expected. This is the issue I think with the rareness of GIST - there just isn’t enough data on survival as the drugs keep improving so someone’s experience 10 years ago might be very different from now, for example. Do keep me updated, or if you want to vent any time feel free.