It was September 2003. I had been married one month. I started feeling queasy in my stomach - nothing unpleasant but nonethess persistent. After a couple of weeks of nagging, I eventually took myself off to the doctor. He prescribed something for stomach acid. As I was about to leave, he added, as an after-thought, that I should have a blood test. This was because I had told him that I was getting tired a lot. So he gave me the blood test kit and I left.
I started taking the stomach acid pills and was pleased at the relief they gave me. I also went to have the blood test. A day or so after the test, I was in the office (it was early evening) when the phone rang. My wife, Audrey, told me that there was a message on the answerphone from my GP telling me that I HAD to go and see him in the morning. My blood count was so low that I had to be suffering from internal bleeding. This was early January 2004. I left an email for my boss, telling her what had happened and that I would not be in the next morning.
My GP set me on a course of referrals and tests (endoscopy, etc). Clearly something was wrong but there were no actual signs of internal bleeding. During this time, I was suffering severe sickness and was twice taken to A&E by ambulance. Eventually, the hospital consultant who was co-ordinating the tests, had me admitted to Mayday Hospital, Croydon, for a week of observations, and it was during this week (in the lead up to Easter) that they finally found that I had a "lesion" in my intestine. I was told that they were not sure what it was but that they were in consultation with the Royal Marsden Hospital. I was, of course, offered cancer counselling, even though I had not yet been diagnosed for definite. While I was grateful for this - and relieved that something h ad been found, I preferred to wait until getting a formal diagnosis.
About 3 weeks later, my consultant confirmed that I had GIST and referred me to the Royal Marsden. In response to my questions, he told me that, without treatment, the tumour would kill me in a maximum of 6 - 8 years. So I agreed to treatment.
A CT Scan revealed that I had a small tumour in the jejenum (just below the duodenum) and a larger, secondary tumour in the liver. I was immediately prescribed Glivec, initially at 200mg per day then 400 mg. The local PCT approved this and I commenced taking Glivec in June 2004.
At first, it was OK. I had some sickness and diarrhoea. However, it was only a couple of weeks later that I started getting severe muscular pains in my legs and sore feet. It was so bad that one day I could not bear to stand. My doctors agreed to see me urgently and Audrey took me in a friend's wheelchair from Croydon to the Marsden, via tram, train and taxi. I was given Ibuprofen to take along with the Glivec and this made an enormous difference. After a few days of taking both, I felt safe enough to stop the Ibuprofen and kept taking the Glivec. The side effects settled down and life became relatively tolerable. I was basically now on a regime of 3-monthly CT Scans and 3-months supply of Glivec.
The scans revealed that everything was going well. The tumours were both shrinking and the upshot was that, in May 2005 I was admitted to North Hampshire Hospital in Basingstoke for liver surgery by Mr M Reece. (Not sure if that's the correct spelling). He was absolutely brilliant. Extremely confident that he could successfully remove the liver tumour and promised to have a go at the one in my jejenum as well. The day after major surgery, he came to see me. He had got both tumours clean out! Had I not been bed-bound and connected to myriad tubes, I could have kissed him! After a further 7 days in hospital, I was allowed home and began the long, 3 month path to recovery from the surgery.
I had been taken off Glivec about 2 weeks prior to surgery, so as to enhance the chances of removing the tumours. After discharge, I was put back on Glivec, again at 400 mg per day, to help prevent recurrence. I was also put back on a regime of 3-monthly CT scans.
The scans were all clear. In January 2006 I was taken off Glivec and quickly felt better than at any time in the previous 2 1/2 years. The scans in April and July 2006 continued to be clear and the doctors were telling me that they had hardly ever seen such a good response. All the more disappointing then, when the October scan revealed a small recurrence in my liver. I was back on Glivec (again starting on 200 mg then moving up to 400mg). I anticipated the same sequence of severe side effects followed by milder ones. Maybe because this time I decided to take it with my evening meal rather than breakfast, this proved not to be the case. The side effects have been mild from day one. The CT scan results show that the tumour is "suffering" and the doctors could not be more pleased with how things are progressing. They assure me that I could safely stay on Glivec for years, although they will keep me on 3-monthly scans for the foreseeable future.
I am very encouraged by your website and the opportunity to have contact (at long last) with other people who have the same illness. I hope that you plan to have another meeting soon and would, of course, be very interested in attending.
I am a 55 year old man living in Croydon and am fortunate enough to have been given medical retirement on the same terms as if I had retired at age 60. In a strange way, I feel lucky to have this particular kind of cancer as the treatment has been so good. I feel I have a lot to look forward to - not the least of these is seeing my 6 year old daughter growing up.