Tuesday, 19 August 2014

When science runs out

I've long been fascinated by all things scientific. As a youngster programmes like 'Tomorrow's World', 'Horizon' and 'QED' were some of my favourites and I studied physics and chemistry at school before electing to do a degree in computer science, a decision based more on career prospects than on any strong preference for bits and bytes over cosmology and quantum mechanics (ok, computer science is easier than physics but let's pretend that wasn't a factor).
It's not surprising then that I have a strong preference to base all my treatment choices on good scientific evidence. In the field of medicine such evidence is provided by large scale double blind placebo controlled clinical trials. In my case there are four suitable chemotherapy treatments for Leiomyosarcoma (LMS) that most sarcoma oncologists would view as well supported by trial data. Unfortunately I reached the point some months back of exhausting all four of these treatment options. This leaves a difficult problem: how to make treatment decisions in the absence of compelling scientific data?
Over the last few months I've evolved the following criteria to answer this question: 
  • Is there some scientific evidence supporting the use of the treatment that makes it relevant to my case? This evidence is usually in the form of lab based experiments, trials on animals (usually genetically engineered mice) and small scale, non-randomised or non-placebo controlled trials. None of this evidence can be considered sufficient to demonstrate the efficacy of the treatment but it is at least indicative that it could be beneficial.
  • Does my oncologist consider the treatment option to be a valid and sensible choice given my condition? I've been extremely satisfied with the advice and care provided by my doctor and I really like the consultative way in which he approaches treatment decisions. I'd be loathe to try any treatment that he felt was inappropriate.
  • Is there anecdotal evidence supporting the use of the treatment? Anecdotal evidence is not scientifically valid when making treatment decisions, however it is hard not be reassured when hearing that other LMS patients have tried a treatment and had some success whilst on it.
  • Is the treatment likely to cause only very minor side effects? This is really important to me, I don't want to try speculative treatments that are likely to have a very significant negative impact on my quality of life.
  • Is the treatment cheap and readily available? Some treatment options that I might decide to use are not covered by the NHS. Given that the efficacy of any treatment option is very uncertain I don't see the sense in spending significant money when cheaper, equally promising options are available.
The drugs and supplements I'm currently taking as part of my treatment each individually meet these criteria (cyclophosphamide, metformin, melatonin and PSP). I'm sure there are many other ways to make choices about treatment but the above gives me a consistent way to stay as close to the scientifically supported as I can whilst accommodating my requirements on cost and side effects.
Last week Katie and I were in north Devon, one of the highlights was the chance to photograph badgers at Devon Badger Watch. Photographing badgers is made particularly difficult because they don't usually emerge until the light is fading. Here are some shots from our visit when cloud and rain made the light in the wood almost too low to shoot in (click or double click the images to view at a larger size).  
Here's a  badger first emerging from the sett:
Out and about:
'I know there's a peanut hidden in here somewhere':


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