A bright side to the end of summer

One compensation for the end of summer is that it marks the start of the rugby union season. Katie and I are supporters of Bath Rugby and we often go and watch their home games. Bath had a promising but ultimately disappointing season last year as they came up just short of success in the league and cup competitions, we're hoping for better this time around.

 

Last week they played a pre-season friendly against Llanelli Scarlets. I like to go along and take photo's at the friendly games as it's possible to get a good position in the stand without getting in the way of other supporters and interfering with their enjoyment of the match. Here are a couple of the photo's, first Bath's Carl Ferns on the attack:

 

 

Bath successfully claim the ball at a lineout:

Llanelli's Steven Shingler kicks a conversion:

 

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My health status hasn't changed in the last week or so, generally I'm feeling pretty good with just a few minor issues. I've been having some trouble sleeping for quite a number of weeks now. I'm finding that I have to get up to go to the toilet at least twice each night, any male readers over sixty five are probably saying 'welcome to the club'! I think that one of my tumours presses on my bladder when I'm lying down. Also I wake up between 4am and 5am each morning and find I can't go back to sleep. I'm very glad to have my iPad and the internet to pass the time between then and 7am. Katie is enjoying the cup of tea I'm bringing her in bed each morning! Despite these disrupted nights any fatigue I'm experiencing is a lot less severe than it has been at some points earlier this year.

 

Overall I'm very happy with how I've been feeling and will be extremely pleased if this continues over coming months.  

   

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.

 

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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':

 



 

 

A surprise scan result

Katie and I met with my oncologist yesterday to get the results of the scans I had last week. We weren't feeling very optimistic given that I've had a few more issues recently. We were incredibly surprised and pleased then to hear that the scans show that my cancer has been stable since I started taking the most recent treatment, metronomic cyclophosphamide. The cancer was growing quickly before I began taking this drug so to have halted its progression is really positive.

 

This is the first good scan result we've had since September last year. It really was pretty stunning to hear the good news and it was quite difficult to take in immediately. We shouldn't get too excited however as it is only eight weeks of stability so far. Research papers and anecdotal information suggest that some people have six months of stability on this treatment, that would be very nice indeed! I will keep taking the cyclophosphamide and have another scan in eight weeks time.

 

There is research that suggests that it is useful to take other drugs and supplements that have anti-cancer properties at the same time as taking metronomic chemotherapy. I'm already taking the diabetes drug, metformin, for this reason. For the last couple of weeks I've also been taking melatonin and I am now going to start taking PSP (polysaccharide-peptide) too. PSP is an extract from the Chinese mushroom Coriolus Versicolor. There are some studies that show that PSP can slow the growth of sarcoma and lung cancer. The evidence for the beneficial effects of PSP is far from conclusive at present, however it is not thought to have harmful side effects and the risk of taking it is, therefore, low.

 

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I recently spent a day in a hide in Worcestershire photographing kingfishers. These are such colourful and characterful birds it is always a pleasure to spend time observing them and they make for great photographic models (click on the images to see larger versions).

 



A hundred thousand genomes

You may have seen news coverage last week of the '100,000 genome project'. This is a UK initiative which will map the genomes (the genetic code) of 100,000 individuals with rare diseases. The intention is to build a data set that allows researchers to identify the genetic mutations that are important in a range of serious illnesses. The project is a massive undertaking with ambitious timescales, the plan is to complete the project in four years.

 

Cancer is a disease that is fundamentally related to genetic mutations so the project should be of particular value in identifying new treatments. There are already a number of oncology drugs that work by targeting known genetic mutations in some specific types of cancer, for example the drug imatinib revolutionised the treatment of Gastrointestinal Stromal Tumours (GIST for short) by targeting a genetic mutation that is essential to the growth of the most common form of this cancer. Prior to imatinib GIST was extremely difficult to treat as it does not respond to chemotherapy. Imatinib has led to a very significant increase in patient survival times even if it does not provide a durable cure to the illness. For many cancers no genetic targets for new treatments are currently known, this is the case for Leiomyosarcoma, and this is where this project has really exciting potential.

Whilst I'm very enthusiastic about this initiative I do have a concern about some of the bold statements made in the media concerning its likely impact. For instance the BBC quoted Prof Jeremy Farrar, director of the Wellcome Trust, as saying:

 

"We will look back in 20 years' time and think of blockbuster chemotherapy [as] a thing of the past and we'll think 'Gosh, what an era that was'."

 

The history of cancer research is littered with exciting initiatives that seem to offer great hope of significant advances in treatment, however these very often fall short of those initial expectations. 20 years is actually quite a short time in which to take a new treatment from discovery through to widespread clinical use so my personal view is that Prof. Farrar's predication may be somewhat optimistic, but let's look on the bright side, it would be wonderful if he is right.

 

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I had my latest head and body scans last week, I should get the results on Thursday. Depending on what this shows I'll either continue with my current treatment or see what other options are available. In the meantime I've been continuing to have a few more issues with pain and abdominal discomfort. This is not causing me a major problem at present but it does make me feel a little less optimistic about the likely results of the scan than I was two or three weeks ago.

 

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Katie and I and some friends of ours visited the International Bird of Prey centre in Gloucestershire a couple of weeks back. It's a great place for anyone who likes birds and even those less interested will be impressed by the flying displays that the centre runs three times a day. I've visited the centre several times before but I particularly enjoyed this visit as the flying displays featured a number of owls. Here are a few of the images I took.

 

This is a young eagle owl:

 

 

 

Short eared owl:

 

 

 

And finally, an ashy faced owl: