Gastrointestinal Stromal Tumor (GIST)

[Gabe]

I am wondering if there are people on Cancer Connections with this rare sarcoma ...Gastrointestinal Stromal Tumour (GIST)? I had surgery on the 1s to August to remove a 24CM tumour and have now started on the Chemo. drug Glivec (imatinib). From all my online research there would not be too many people with GIST in Australia. P.S. I am a 7 years survivor of Oral Cancer.

[Jade32]

Hey there, I was diagnosed with GIST about two weeks ago.

[Perry]

Yes, I'm on Gleevec post-surgery, too. Mine was rectal, and is an Exon 11 deletion with 30/50 HPFs (high risk of recurrence). You'll find me on the GIST Facebook pages, too, as well as the Dana Farber Cancer Institute groups. -Perry-

[Gabe]

Hi Perry, How do I find you on the GIST Facebook pages? I am also on a few FB GIST groups. Gabriele

[Gabe]

Hi Jade32, I was also diagnosed around 4 weeks ago. Can you let me know a little more?

[Perry]

Look for me as PerryLowell: https://www.facebook.com/perry.lowell The GIST pages you can just search on GIST. See you there, too! -Perry-

[Gabe]

Found you and friend request sent......I am in all the same GIST groups and remember seeing your posts there 🙂

[Jade32]

I have a tumour on or around the stomach/bowel area. This has also spread to the liver, so surgery is no longer an option. I've just started on Glivec(imatinib). Thanks for replying.

[Gabe]

Hope you are doing OK on the Glivec. I have only been on it for just over 2 weeks...I take my 16th tablet (400mg) after dinner tonight. So far so good with pretty minor side effects. I am very new to this so there is nothing I can offer in the way of advice. I only know that the Glivec should be shrinking your tumour. Are you having CT scans every 3 months? Gabriele

[footie_and_bill]

hello Gabe, I was diagnosed with metatastic gist exxon 9 in my liver on 13/9/11 and was put on glivec 800 mg for 14 months.i have only found about 10 people with gist in australia in 2 years.i hope you have a good response on glivec it has been the easiest one for me to tolerate.hoping for the best for you footie.