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) ... View more

Footie & Bill, I was saddened to read your latest post, I hope you have been able to fulfilled your wish and spend some lovely time together. Sending cyber hugs Naomi (GISTER) ... View more

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 🙂 ... View more

Hi Jade32, 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) ... View more

Hi Dunnc, I have metastatic GIST, with METS through out my pelvic, intestines areas and also my liver. My primary was on the small intestine, I had 2 small intestine resections. I'm about to start Sutent as I didn't response to Glivec. Did they do a biopsy on your tumour? Have they mentioned anything to you about going onto Glivec, which is the first line of defence? Naomi ... View more

Hi Dunnc, 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???? Naomi ... View more

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. Cheers Naomi ... View more

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 ... View more