topic Re: Gastrointestinal Stromal Tumor (GIST) in Treatments and side effects

Gastrointestinal Stromal Tumor (GIST)

Gabe — Mon, 30 Sep 2013 02:07:37 GMT

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.

Re: Gastrointestinal Stromal Tumor (GIST)

Jade32 — Mon, 30 Sep 2013 09:03:52 GMT

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

Re: Gastrointestinal Stromal Tumor (GIST)

Perry — Wed, 02 Oct 2013 00:45:08 GMT

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-

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Wed, 02 Oct 2013 01:43:21 GMT

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

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Wed, 02 Oct 2013 01:45:08 GMT

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

Re: Gastrointestinal Stromal Tumor (GIST)

Perry — Wed, 02 Oct 2013 02:19:13 GMT

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-

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Wed, 02 Oct 2013 02:42:45 GMT

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

Re: Gastrointestinal Stromal Tumor (GIST)

Jade32 — Wed, 02 Oct 2013 03:03:56 GMT

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.

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Thu, 03 Oct 2013 07:33:34 GMT

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

Re: Gastrointestinal Stromal Tumor (GIST)

footie_and_bill — Thu, 03 Oct 2013 13:32:56 GMT

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.

Re: Gastrointestinal Stromal Tumor (GIST)

Jade32 — Fri, 04 Oct 2013 00:29:58 GMT

Thanks Gabe. I'm having a CT scan in two months, hopefully that will show some good signs. My oncologist seems pretty confident! I haven't had many side effects either thankfully, just feel a bit off colour some days. Add me to your list of people Footie and Bill! Do you know why you're on 800mg? I'm only on 400mg. Have a good day, cheers.

Re: Gastrointestinal Stromal Tumor (GIST)

footie_and_bill — Fri, 04 Oct 2013 10:24:26 GMT

unfortunately when diagnosed i was secondary stage 4 as bad as you can get. They had to hit it as hard as possible straight up. I am no longer on glivec i went onto sutent next but now on 7th cycle of regorafenib cheers footie

Re: Gastrointestinal Stromal Tumor (GIST)

gister — Fri, 04 Oct 2013 10:26:14 GMT

Hi All, I was diagnosis with wildtype GIST after emergency surgery on the 2nd Sept 2012, so have just past my 1 year mark!!!! After surgery I went onto 400mg of Glivec after 8 months and increasing it to 600mg I made the switch to Sutent as I had tumor progression with METS to my liver. I started off at 50mg of sutent and stopped at 3 weeks due to high liver levels and it took 7 weeks for my body to recover before I could start again. I am now into my 5th week at 25mg. Will re scan in 3 weeks and then probably increase to 37.5mg. I have found the side effects a lot harsher with Sutent. Some of side effects I experienced with Glivec were nausea, fatigue, running to the toilet quite a bit, bumping skin on my face & puffy eyes. I hope you all can tolerate it well. I'm under the care of an awesome DR (his nurse co-ordinator is pretty good too) at Peter Mac in Melbourne. I hope you are all doing well and giving the nasties a hard time. Naomi 🙂

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Mon, 14 Oct 2013 05:55:25 GMT

Just over 3 weeks on the Glivec (400mg) and so far the side effects are pretty minor. Main issue is still recovering from the infection I contracted while in hospital having the surgery. Daily nurse still coming to pack and dress 2 wounds that were opened along the surgical scar. Hope you are all well or as well as can be expected ;-) Gabriele

Re: Gastrointestinal Stromal Tumor (GIST)

Ibanez_Blazer — Mon, 25 Nov 2013 04:30:40 GMT

Hi guys Found this website after doing research on GIST. Was recently diagnosed with the disease in Melbourne and keen to find out about other people in Australia who have this. I'm similar to Jade32 in that I'm a 33 year old male with metastatic GIST in the liver. Off to see the Oncologist tomorrow to begin drug treatment.

Re: Gastrointestinal Stromal Tumor (GIST)

Jade32 — Mon, 25 Nov 2013 05:42:22 GMT

Hey there Ibanez_Blazer. Sorry to hear about your situation, good luck with your treatment. I went to see a GIST specialist in Melbourne last week, his name is Dr. Jayesh Desai, you should go see him if you get a chance. Let us know how you go tomorrow, all the best!

Re: Gastrointestinal Stromal Tumor (GIST)

gister — Mon, 25 Nov 2013 20:15:25 GMT

Hi Ibanez_Blazer, I'm a 38 year old female who has wildtype test. I was diagnosed just over 12 months ago. I travel from Hamilton in south west Victoria to Peter Mac to see my wonderful oncologist Dr Jayesh Desai. Currently travelling to Melbourne once a month for appointments, scans etc. I have an appointment with Dr Jayesh today. So enjoying some city time and shopping too. We have to make to most of our situtation!!! Good luck, Gister (Naomi)

Re: Gastrointestinal Stromal Tumor (GIST)

Gabe — Tue, 26 Nov 2013 00:07:12 GMT

Hi Ibanez_Blazer, There seem to be a few of you from Melbourne. You will be able to share your experience with regard to hospitals and specialists. Best of luck with your Oncologist visit. Keep us posted ;-) I will have my 2nd CT Scan post surgery (1st Aug) and after nearly 3 months on Glivec in early December. Then meet with my oncologist mid December! Gabriele Sydney

Re: Gastrointestinal Stromal Tumor (GIST)

Ibanez_Blazer — Tue, 26 Nov 2013 05:58:22 GMT

Hi guys Thanks for the quick responses and recommendation to see Dr Desai. Not much to report - They are still waiting for test results + paper work to be signed. But will let you know how it progresses.

Re: Gastrointestinal Stromal Tumor (GIST)

dunnc — Wed, 10 Apr 2019 22:44:45 GMT

Hi Footie it’s been awhile I had a second breast cancer so I haven’t been online. How are you going? My duodenal gist has been monitored for years it’s 2cm I constantly feel sick and I’m in so much abdominal pain, however surgeon doesn’t think it’s related. He is sitting on the fence as to the option of surgery. He told me it’s a big one. My gastroenterologist thinks I just have severe ibs. I don’t really think it’s ibs because I spend all weekend resting from pain. Did you have surgery? I hope your doing ok.