Gastrointestinal Stromal Tumor (GIST)

[Jade32]

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.

[footie_and_bill]

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

[gister]

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 🙂

[Gabe]

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

[Ibanez_Blazer]

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.

[Jade32]

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!

[gister]

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)

[Gabe]

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

[Ibanez_Blazer]

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.

[dunnc]

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.