An unusual experiment

Just before I left for Singapore and Malaysia, I had a PET-CT scan, my 5th in two years. A clear "18-F Glucose avid" bright spot was apparent on the right anterior wall of the upper abdominal cavity, unambiguoulsy indicating a 1.4 cm tumour confirmed in the CT scan. There was also a suspicious 0.7 cm diameter dark spot in the lower right lung lobe, apparent in the CT, but not in the PET. This could also be a tumour. My latest CEA had risen again, this time to 16.6 ng/ml. It is clear that the cancer has indeed returned.

A number of options were discussed with my Wellington oncologist, Andy Simpson, given the limited drug strategies available. In short, all that is left, for FDA approved treatments, is the Avastin-irinotecan-capecitabine regime which had some effect in 2010. We are hopeful that this may provide some respite (it cannot cure) at some time in the future, provided that my cancer cells have not evolved to be immune to these drugs. The question is "when does one hit the cancer?" In metastatic disease, where management rather than a cure is sought, it is not necessarily obvious that one hits early. And so, we have settled on a "wait and see" period, allowing me to travel to the UK in early July to spend time with my family there. Miang and I had originally planned to return in late October. However, a more likely target might be late August, allowing me to begin treatment on my return.

Andy is very wise and welcomes other opinions. Indeed he sought that of Richard Isaacs, my Palmerston North private oncologist, who supported the "wait and see" strategy. I did my own second consultation with a top Johns Hopkins oncologist at their Singapore international centre. He concurred, and indeed could not fault the entire treatment strategy to date.

There is a hopeful scenario, one so optimistic as to stretch the limits of credulity, and it goes something like this. The lung spot is an artifact, perhaps a fungal infection. The upper abdominal tumour is the sole tumour left after the peritonectomy. And over the next few months that tumour may grow locally but doesn't spread. Now, if you believe all that you are probably someone who buys lottery tickets in the hope of a win. But suppose, for the sake of it, we win that lottery. Then surgical excision removes the last remaining cancer and I am cured.

OK, let's take a reality check at this point! I have had metastatic cancer and, despite the brilliance of the peritonectomy surgeons, it is most likely that in addition to my singular evident tumour, cancer cells lurk in multiple sites in anticipation of future multiplication and angiogenesis. In that much more likely scenario I am fighting blind, hoping that my own immune system might finally wake up, despite previous failure, and surprise us all. Is there just a chance that I could give it a little help?

So what are my strengths at this phase of the contest? First, in ignorance of the scientific data, I would appear to be in rude good health. Second, I have a supreme intelligence tool, a simple, immediate and highly sensitive indicator of the presence of the cancer cells, that of the perfect-track-record CEA blood test. Third, I have a lull in the application of scientific medicine weapons during which I might try out some unproven but interesting devices. Let me be clear, I do not deviate one step from my trust in evidence-based medicine. There are only two types of medicines-those that work and those that do not, and double-blind randomized placebo-controlled trials on multiple patient cohorts can provide the definitive evidence that gives us confidence as to which class a proposed treatment belongs. Thus fails homeopathy and its soul mates.

But I am not a randomised cohort. I am Paul Callaghan, EYD7212, and I get one chance at life. And I am a scientist with my own experimental tools relevant only to me. So I can try an experiment on myself. Is there a potential drug which has some plausible physical basis of action, where safe doses are known, and whose side-effects are minimally invasive of life quality? Because if there is such a drug, why would I not try it during my chemotherapy lull, given that I have a surefire test of its efficacy?

There are two, maybe three, and ideally I would try them separately, but given my limited time window, I will try a couple simultaneously, the obvious downside being that if their combination is effective, I shall never know the true source of my salvation. But that is a downside that I, being the "n=1" that I am, will be prepared to live with, if you will excuse the pun.

I am now undertaking that experiment. Details will follow that may amuse you as much as they do me.