In 2002 when my husband Alan, a healthy 60 year old, active golfer and full time Judge, was diagnosed with a Gastro-Intestinal Stromal Tumour (GIST) in the stomach we didn’t know where to turn. There were no clear symptoms of illness apart from the tiredness we all feel during a long hot summer and at the end of the working year. A blood test disclosed anaemia and subsequently a routine endoscopy revealed the tumour. Cat scans showed the cancer had spread to Alan’s liver.
Frantically we tried to find out everything we could about this rare cancer. We knew conventional chemotherapy didn’t work but there was a miracle drug, Gleevec (c), which had demonstrated efficacy in treating chronic myeloid leukemia and which might be an answer! Without this medication Alan’s life expectancy would have been perhaps one year.
Following Alan’s recovery (from what can only be described as brilliant keyhole surgery), he started a trial of Gleevec (c), a targeted therapy, at Westmead Hospital. While the surgery had removed the primary tumour, there were still the liver metastasis to be dealt with. Initially these were described as being ‘multiple’ but over time following treatment with Gleevec (add copyright symbol, these gradually diminished until they were no longer detectable in scans.
We started to feel optimistic. Alan had resumed work a couple of months after his surgery and also got back to golf. We started to travel again. Gleevec (c) is a continuous therapy and for Alan fortunately the side effects were minimal. Apart from a small glitch when a couple of recalcitrant metastasic re-emerged in his liver (which were treated with Radio Frequency Ablation), we enjoyed almost five years of good quality living. After a few years, Alan retired and was considering a career in Egyptology.
Having realised that medical trials had given him a second chance at life, Alan became a strong advocate for their benefits. He was invited to join the Board of Australasian Gastro-Intestinal Trials Group (AGITG) where he remained as a Director for five years until his death. He championed the idea of a Consumer Advisory Panel.
A routine scan revealed a new and unexpected growth in the peritoneum which necessitated its surgical removal. Although the pathology was unclear at the time, in retrospect it was probably a new GIST. This suggested that our initial miracle drug had probably run its course but by this time new targeted therapies were emerging. Alan commenced a second targeted therapy called Sutent.
Again he was part of a trial for this particular targeted therapy, which was also being used in testing various other forms of cancer totally unrelated to GIST. Although the side effects for this drug were more severe than for the earlier medication, they were tolerable. Sutent helped Alan for two years. But when that drug ceased to be effective, a third targeted therapy was unable to stop the cancer which had started to progress on many fronts.
While Alan’s initial diagnosis was a terrible shock for us, had the cancer been diagnosed a few years earlier prior to the availability of targetted therapies, the outcome would have been extremely bleak. For my part, I remain thankful for the extended time that we did enjoy together after his initial diagnosis, thanks to the benefits of the targeted therapies. I am committed supporter of medical trials and proud to play a part in those supported by the GI Cancer Institute as a member of the Consumer Advisory Panel.
Christine Bishop, member of the AGITG Consumer Advisory Panel.