Just discovered this FB group which is not closed. Seems to be a lot of people on it including those asking to link up with other Australians. www.facebook.com/groups/gistsupport/ ... View more

Yes, it is something that many doctors will never see in their career. There are more people in Australia than in NZ! I belong to a 'closed' facebook group called GIST survivor. I have only been a member for a month and joined before it became closed. Go to www.facebook.com/groups/43875181964/files/ and see if you can join. There are a few Australian members on there - you are NOT alone! I know how much you will want to connect with others. Let me know how you get on. ... View more

Hello Foxy. I live in New Zealand, and so cannot speak for what happens in Australia. The best advice and support I can recommend is the Life Raft Group (liferaftgroup.org). I have found this group extremely supportive and informative. They keep an international register of GIST patients and are also involved in research. The LRG website is extremely informative, with information from the most basic, through to complex research articles. Hope this helps! ... View more

I'm so sorry you are going through this roller coaster experience, and hope Glivec is helping. Finding other people going through the same experience will be very comforting. I would highly recommend getting in touch with the Life Raft Group. They are so welcoming and have so much information and research to share, regardless of where we are in the world. I am doing very well now thank you, and only have another few months of surveillance. ... View more

Hello GISTER. I'm sorry not to have replied earlier - I've been overseas and out of contact for a while. It sounds as though you have had a very rough few weeks, and everything must have happened so fast for you. My story is very different from yours as I am in a low risk group. However, I think that for all of us the important thing with a rare cancer is to educate ourselves as much as possible about GIST. My CT scan was clear so I am very fortunate. I hope very much that you are developing coping skills for this difficult part of your life and that you have lots of support. Stay strong and all the best! ... View more

That was a big tumour and so typical of GIST to not show any symptoms until it is large. I hope you find the website helpful as some of the patients on it who have not responded well to Gleevac have tried other drugs. Hopefully one day we will come up with a blood test or something to pick up these nasty cancers early. All my very very best to you and your dad. Eljay ... View more

Hello Irish. I am so sorry to hear about your dad. GIST can be such a lonely cancer. I am one of the extremely fortunate people whose gastric GIST was discovered incidentally while having a gastroscopy for another reason. I had a gastric sleeve op (stomach staple) a year ago to remove the tumour along with a small part of my stomach. Because the tumour was 4cm and of a low mitotic rate I do not need Gleevac. We hope that it only has a low chance of recurrence, but because GISTs can never be said to be cured I have to have regular CT scans and gastroscopies. The oncologist said there are only a handful of people in the world like me and there is no definite protocol for follow up. Most of the time I don't worry about it - but when it's time for a CT i wonder if it will be back again or have metastised. It has changed my whole outlook on life - for the better! There is a GIST International website which you may find helpful. It is so hard to get any information from anywhere else. ... View more