I'm a 36 year old that has just been diagnosed with Gastro Intestinal Stromal Tumor (GIST). It is a rare cancer and I have found it very frustrating in trying to find reliable information in regards to this type of cancer.
I would love to hear from anyone who has ever had to deal with GIST!
Keeping positive 🙂
I don't have GIST I am a colon cancer survivor. I have however been a member of the american cancer suvivors net(csn) since nov 2001. I just had a look on csn and found GIST under Rare and other cancers. There were quite a few posts on it and in particular most referred to a new treatment drug called Gleevic which appears to be specifically for GIST. Hope this might help you ,Hugs Ron.
i was diagnosed with metastic gist exon 9 in september 11 and comenced treatment with glivec 800 mg.i was given an imformation pack from gist alliance.when i was put on sutent 50mg i was given a star program kit both of these have a lot of good info in them .i hope this is some help and i know your frustration this cancer is rare i have not found anyone with it to talk to in australia. best of luck mark .
42 year old with a gist tumour on Australia. I have also had breast cancer. There isn't
Much information or help for this tumour. Mine
Is 1.5cm incidental finding during a gastroscope. I
Am seeing a surgeon in Melbourne for a consultation.
Just wondering how you got on?
i am also seeing a surgeon in melbourne and when i finish my 2nd cycle of regorafenib will be having a ct scan at peter mac on the 2nd of july.i will then find out the results the next morning to see if this drug is working.
Hi Mark & Dunnc,
I had emergency surgery on the 3rd September 2012 and found out on the 15th September that it was GIST! My primary off the small intestine had ruptured and had other METS removed. A follow up PET scan showed 2 tumors remained. I started on Glivec 400mg with CT scans every 3 months. My CT scan in APRIL showed further progression to the 2 tumors with 4 new ones plus 4 METS to the liver, we also found out at this time I had no mutation which puts me as WILD TYPE. At that stage we increased Glivec to 600 mg and another CT in 8 weeks. Further progression was seen. I have been on no drugs for the past 2 weeks as we wait for approval of SUTENT 50mg. I have an appointment at Peter Mac on this Tuesday to get the new drugs. Hopeful I can tolerate Sutent better than the Glivec, but as long as it can slow the growth down, I will be happy. Mark how did you tolerate the Sutent, any tips?????
I live in country Victoria and have an 8 hour round trip to get to Peter Mac, but wouldn't have it any other way. I started off with an other Medical Oncologist closer to home but after a lot of research I discovered Jayesh Desai at Peter Mac. I went to him for a second opinion and had no hesitation in changing my care to him, he has had a lot of experience with GIST and feel completely comfortable that he will do everything possible for me.
Will be doing quite a few trip to Melbourne over the next few months, starting with Tuesday 25th June to collect Sutent.
I also do not know anyone else in Australia with GIST, so it is very nice to meet you both and know that we have something very rare in common.
I would love to hear more about both of your stories.
I had emergency surgery as I had severe stomach pains and they discovered a ruptured 6cm mass and 5 other nodules which all came back as GIST. So I had no time to plan for surgery or even find a surgeon that had experience with GIST. The surgeons that did the surgery didn't even mention anything about GIST they thought it was endometriosis. So I do wish I had time to seek expert opinions like from the staff at Peter Mac. Are you seeing someone at Peter Mac????
you are certainly under the best oncologist in melbourne for gist jayesh is wonderful. I live in albury and also go to melbourne to see jayesh once a month while on regorafenib. I was fortunate enough to tolerate glivec 800mg without too much trouble till disease progression a fourth met in liver. unfortunately when put on sutent 50mg i really struggled with side effects however a scan after two cycles showed a fifth met in liver which is definetly ammune to glivec and sutent. Tips for sutent ... rest and stay at home and good food and quiet time.
hoping all goes well for you next week
It certainly is a shock when we first receive our diagnosis. I have just past my first 12 months of having surgery and being diagnosed. I am wildtype and was on Glivec for 8 months until I had tumor progression and then went onto 50 mg of Sutent. I had a terrible time with side effects with spending sometime back in hospital due to pain. After 3 weeks I had to stop the Sutent as my liver levels got too high. It took me 7 weeks to recover and I have now gone back onto sutent at 25mg and tolerating it much better. Will re scan in 4 weeks and go from there.
I was able to tolerate 400 mg of Glivec quite well, generally just some nauesa, tiredness and running to the toilet a lot, I did struggle a bit once we increased the dose to 600mg. I hope you are able to tolerate it.
Have you or are you having surgery on your tumor/tumors???
Cheers Naomi (GISTER)
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.