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