Hello Keel71, I’ve been browsing these forums and just saw yours and had to respond, as you are in a very similar boat to my husband. He had emergency surgery last October to remove a ‘mass’ that had perforated in his bowel.  This turned out to be a GIST that had ruptured, and although removed, the rupture meant that it spread, so he was diagnosed incurable in April this year. Like you he is on chemo tablets, to keep it stable,I  assume you’re on Imatinib? I urge you to contact the charity GIST UK if you haven’t already - they have been so helpful with information about this rare cancer. They have a helpline plus forums. They will advise on where to be treated - there are specialist GIST centres who are experts in it. I attended a recent meeting in London and there were many people who had been on Imatinib for years, with it keeling the cancer stable. But I’d also say that your feelings are very normal in this situation, it’s very difficult. All the best. 

Hello Keel71, I’ve been browsing these forums and just saw yours and had to respond, as you are in a very similar boat to my husband. He had emergency surgery last October to remove a ‘mass’ that had perforated in his bowel.  This turned out to be a GIST that had ruptured, and although removed, the rupture meant that it spread, so he was diagnosed incurable in April this year. Like you he is on chemo tablets, to keep it stable,I  assume you’re on Imatinib? I urge you to contact the charity GIST UK if you haven’t already - they have been so helpful with information about this rare cancer. They have a helpline plus forums. They will advise on where to be treated - there are specialist GIST centres who are experts in it. I attended a recent meeting in London and there were many people who had been on Imatinib for years, with it keeling the cancer stable. But I’d also say that your feelings are very normal in this situation, it’s very difficult. All the best. 

Hello Sunflower2000,

Thank you for your message and yes I am on the same medication that your husband is on and I wasn't aware of GIST UK, unfortunately I haven't been given much information about any of this so thank you for that.

I hope your husband carries on being well.

Take care x

No problem, and please contact GIST UK their website is www.gistcancer.org.uk, they have been so helpful. It’s a lot to take in being told you have cancer, never mind one you’ve never heard of! My husband was 60 when he had his op last year, I was 52. It came from nowhere, no symptoms, to being told it’s spread and incurable, but that he’ll have ‘years not months’, so we’re trying to keep some semblance of normal life but it’s hard. Take care x

Good morning Keel71 I was just wondering how you were getting on.  Im okay just plodding along.  Have another scan next week, it doesnt seem to end.  Did you get some support like Sunflower said?  Take care

Lee x

Hi Keel71  I just wondered how you were getting on?  

Hi Keel,  I first chatted to you over a year ago.  I was wondering how you were doing?  I feel a lot better this year than I did a year ago.  Good quality of life and actually went on holiday to Portugal in September.

Lee x

Hello Lee,

Apologies for not replying to you, I couldn't seem to log back in!

I'm thrilled you are feeling better and managed a holiday, I also am feeling better, since my operation I've gone from strength to strength, obviously I still have my 3 months scan check up and waiting on results is always horrible but it's my way of life now.

I also have a couple of holidays but the airport does take it out of me..just hoping this quality of life continues! Stay positive Lee xx