This is the first time i have found anyone that has a GIST tumor other than my Father. Because he stopped his Glevac treatment 2 years ago he is now terminal, the Glevac almost killed him, i was wondering if you are taking the same treatment.
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.
Hi Eljay: you are very lucky that it was found early, that in itself tells me you have beat it. My fathers tumor is 26 cm, when he was on the glevac it shrank to 16, but the glevac made him so sick he stopped taking it, that was two years ago. Needless to say it have grown to the same size again and he is now terminal. I honestly believe that when you have your CT scan there will be nothing there. I will remember you in my prayers.
Thank you so much for telling me about the website.
Dorothy
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
Hi Eljay,
I was diagnosed with GIST 2 weeks ago. I had emergency surgery after suffering severe stomach pains, 5 tumors were removed with the Primary Tumor being 6.5cm on the small intestine. I am now scheduled for a PET scan at the end of this week and go back to my oncologist next week to begin treatment - Gleevac for 12 months (along with regular CT scans).
As the cancer had already spread and the tumor had ruptured prior to surgery my chances of it returning is very high, it worries me once I stop taking Gleevac that it will come back!
Would love to hear more about your story.
Staying positive :)
GISTER
Dorothy,
My father is terminal with GIST after two years on Glevac. We moved him into an independent living apartment, but I fear that move will shortly need to become assistive living and hospice. Can you provide me with a description of the stages your father went through after he was diagnosed as terminal? Did your father have difficulty walking? Did muscle mass decrease rapidly? Thank you for your reply. I am trying to determine what normal progression of terminal GIST looks like.
Rick
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!
Hi Rick,
My father was diagnosed 5 years ago. in that time he had 4 operations to remove the cancer. One almost every year. But it kept coming back. The last surgery the surgeon told us that its too complicated to remove and now nothing can be done. He stopped responding to gleevec then started sutent. This gave him such bad ulcers on his feet and be lost so much weight. He is on another experimental drug but can only tolerate a very low dose. The doctor has said that quality of life is more important. he's often in a lot of pain and we just don't want him to suffer.
hi eljay i hope glivec works for you it did for me for 14 months i was taking 800mg daily with out too much trouble.like all treatment you need to take advantage of your good days and rest up on the bad days.i wish you all the best.
G'day there, I'm 32 and have recently been diagnosed with GIST. The tumour has spread to my liver, so i can't have surgery. I'm on Glivec 400mg at the moment. Hope you're doing well now.
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.
Hi, I see you posting was dated last year. Would it at all be possible for you to please give some more information in regards to GIST. And how this in being monitored in Australia. And what medical evidence is out there and assistance .
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!
Thanks Eljay, GIST is a mystery. Doctors seem not very helpful (yet).
The process is so slow. Someone in Australia has this GIST, surley it is not that RARE!!
Kindest Regards.
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.
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/
