I seem to have had a better experience than most.
My problem was discovered at Easter time 2002 when I had appendicitis. A routine ultra-sound scan displayed irregularities in my liver. Were they birth marks, scarring tissue or what? This led to a CT scan which confirmed the liver problem and identified a tumour in my stomach about the size of my fist.
A subsequent biopsy eventually concluded GIST with secondaries in the liver and following further surgery in Liverpool in May, to explore the lower bowel and find the route forward, I was advised I was a good match for Glivec.
Medication began on 31st May (400 mgs/day) which was stepped up to 600/day on 19th July. This dosage continued until 9th October 2003 when the medication stopped prior to major surgery on 22nd October. During my time on Glivec, side effects have been minimal. These have been confined to periodic weariness and some dry skin, both of which I coped with without difficulty. I have suffered no pain.
The first routine scan after I commenced taking Glivec indicated significant reduction in the stomach and liver tumours (c25% as far as I recall). The second and final scan, I was informed, showed a marginal reduction in the stomach tumour. A subsequent, welcome surprise then came when the surgeon, who would eventually operate on me, revised
his opinion regarding my liver. He advised in fact that no reduction seemed to have taken place with the liver tumours/markings and it was now his view the initial thinking may have been correct and a 50/50 chance existed that the liver may, after all, be healthy and the damage may, all the time, have been simply birthmarks.
He also advised the present medical thinking with Glivec was that its effectiveness in reducing tumours "plateaued" and the time had arrived for surgery.
Surgery was aimed at removing the affected part of my stomach (and liver if necessary). Any damage to my liver would be assessed during surgery by sending samples to the Pathology Department for analysis.
I awoke from surgery to be told there was a good chance all the stomach tumour had been removed but all the stomach had gone with it due to difficulties in working around a main artery. The appendix had also gone (good riddance) and the liver, on the face of it, seemed OK.. No secondary cancer although a few apparently unrelated puzzles which were being examined.
At the time of writing this, I'm 16 days post operation. I'm able to take exercise (and doing so) and drive my car for a short distance. I'm eating solid food -porridge, bananas, fish, biscuits, custard, a meat sandwich yesterday and drank a pint of Guinness today. It's a "suck it and see" process at the moment but I seem to be coping well enough as long as I don't push it. I am pleased with the surgical outcome, hoping for the best and trying to move forward.
My original weight (about 88 kilos) has dropped to about 80 and seems to be settling at about that figure. I am 6'2'' tall
I realise I have probably been a lot more fortunate than many others. Firstly, by pure accident, I was discovered relatively early when appendicitis was diagnosed and a routine ultrasound scan was performed. Secondly, if I hadn't had "freakish" birthmarks on my liver, the original CT scan, which led to discovery of the stomach tumour wouldn`t have taken place. Thirdly I was a good match for Glivec which, in my case, produced minimal side-effects. Finally, after getting over the initial shock of discovering I had cancer I had plenty of opportunity for discussion, rationalise my thinking process and get as fit as possible prior to surgery which was a worthwhile investment. I've also had fantastic support from my family and friends and a great medical team to help me.
Some final comments which I have gleaned from the medics along the road and which may be worth bearing in mind for others are:-
- Avoid CT scans while on Glivec. MRI scans are OK.
- Ceasing to take Glivec about 14 days prior to surgery apparently assists the healing process.
- Glivec seems to make the cancer site somewhat "mushy" and ill defined which probably does not help the surgeon during surgery. What the impact of this may be, I don`t know.
- Glivec remains, at present, an experimental area with plenty of unknowns.
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