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DAVE'S STORY
I was anaemic and, if you are anaemic, you are bleeding somewhere and so I was referred to the Royal Hallamshire Hospital here in Sheffield . . . a prestigious medical establishment but a 1960’s architectural disaster. One of the things that is not allowed in the Hallamshire is internal bleeding; it is completely forbidden and they are going to stamp it out. So what followed is the familiar story; from beginning-oscopy to endoscopy with no result. So, then it was X-rays in earnest, looking at the small intestine where an ace radiographer noticed a narrowing . I was whooshed off to the ultra-sound scanner and jumped the queue ahead of some startled expectant mothers waiting for their routine scans! Sure enough, there was a golf ball size suspicious object which was the cause of the problem. Less than a week later (July 1999) I was back in the surgical ward of the Hallamshire having the object removed which turned out to be a GIST. An introduction to abdominal surgery . . . all new to me. Another thing which is not allowed in the Hallamshire is post-operative pain so I was on a self-controlled morphine drip which worked very well but generated some spectacular hallucinations (do people really take this stuff for pleasure?). On day two when one is feeling that perhaps death was the better option, the physios come in: "Hello David (first name terms only in the Hallamshire), time for breathing exercises and a walk" EXERCISES!, WALK!, help. The surgeon was confident that he had got the lot and there was no evidence of malignancy in the joined region of intestine. I was put under the care of oncology in the nearby Weston Park Cancer Hospital; monthly "how are you" appointments and three-monthly CT scans. During this time Irene found out about Gleevec through a newspaper article so this looked like insurance against a recurrence. Almost exactly two years later (July 2001) one of these
CT scans showed another GIST of a similar size to the first one. So off to
the Hallamshire again and Chris Stoddard went in (through the same
scar) and, this time, fished out the GIST seen on the scan PLUS five much
smaller ones each about a centimetre. I was growing GISTs like other
people grow courgettes! Surgery was completely successful with me a
lot more relaxed about the whole procedure . . . the experienced patient.
Same drill at the Cancer Hospital; a CT scan This was September 11th (yes, the September 11th) and I
was watching the twin towers burn live on TV while waiting for the
appointment. So "lets get onto the Glivec trial" says everybody; come
back on Thursday (13th) and we’ll set you up. Now I knew that the trial
closed for new members on September 14th so I was pretty uptight on the
appointment on the 13th. My blood pressure was so high that the
oncologist was very alarmed. I got onto the trial and was given the highest dose (by
the random choice method) 800 mgms a day. The first CT scan two months
later showed some shrinkage of one object and no growth of the other.
Next scan showed the shrinkage continuing with one object almost
undetectable; the next two scans showed no trace of tumours. In fact,
these last two scans had the report "no evidence of abnormality". This
is, of course, fantastic news for me and my family particularly since, as
the tumours were so small, I had never been actually ill and the whole
business had a rather unreal air; friends, family and colleagues kept
saying "you look so well". What my story shows is: • Early diagnosis means less
dangerous surgical interventions. • Glivec is a life-saver. Update: August 2004I have now been taking Glivec at the high dose (800mg daily) for almost three years. I am now scanned every four months and have a outpatient appointment shortly after the scan to get the results and another four months supply of Glivec. The side-effects were never much bother and now hardly amount to much: a little indigestion and wind now and then. So, I lead a completely normal life for four months at a time with a few days panic around the scan appointments: GIST patients call this state "scanxiety". I enquired about the possibility of reducing the dose just in case there are long-term side effects but the oncologist said (not in these words!) if it ain't broke, don't fix it. That suits me fine Mike Leahy gave the gistsupportUK patient group a talk in Leeds which included data that the vast majority of GIST patients taking Glivec found that the side effects decreased with time. I hope that is true for everyone. (Update August 2006: David is now retired and still enjoying life to the full)
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