KATE'S STORY

I was diagnosed with a large advanced Gist in Jan 2006, it was over 32cm in length, so obviously far too big for surgery and had spread.

Ten days after diagnosis I suffered from the symptoms of an obstruction, this was on the first day of taking Glivec at 400mg. I was in hospital for a week whilst Glivec worked its magic and the obstruction cleared. My Gist was so large that I actually looked 8 months pregnant and was indeed wearing maternity clothes!! But within three months my waistline shrank so much I now look remarkably slim - not bad considering I still have 4 tumours. The largest has shrunk to a 6-7cm, still not small enough to be operated on and since there are quite a few of them I dont think they will operate at all. All that is a bit of a grey area at the moment! Its now been nearly 11 months since I've been on Glivec and I feel fantastic, with only the odd side effect. Long may it last and fingers crossed I am in a good PCT that will pay for more drugs when needed.

In March 2008 I became resistent to Glivec and started on Sutent, which I have been on ever since at various dosages. Currently I am taking 25mg.


We are sad to say that, after trying Nilotinib and finding she was not eligible for any clinical trials, Kate lost her battle against GIST, and passed away early this April (2011). For security reasons, Kate chose to hide her real name on ths site.

Our sympathies go to her family and especially to her two young children.


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