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':
 

 
 

Friday, 8 August 2014

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.
 
***
 
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).
 





Monday, 4 August 2014

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.
 
***
 
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.
 
***
 
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:
 
 
 
 
 

Sunday, 27 July 2014

The problem with small talk

Last week I spent a day in a wildlife photography hide with a photographer from Leeds. We had never met before and were in the hide together for over eight hours. During the day we spoke about wildlife photography but also about more general topics - typical small talk between two people who are strangers. Every time I'm in the situation of talking to someone new I find myself feeling very reluctant to mention my illness. My concern is that if I tell them that I'm seriously ill with cancer this will make them feel uncomfortable. That I've actually remained looking relatively well is also a factor here, if I looked ill then people would have some inkling that I must be poorly and wouldn't find it so surprising to hear about my situation.
 
The problem with not wishing to tell people about my illness is that the topics that people discuss when they first meet are all things that have been strongly impacted by my condition. For example, if people ask me about work I can tell them what my job is but if I tell them I've been off work since January with illness that immediately leads to a discussion about my health. Similarly when people ask about holiday plans I can see them looking rather baffled if I say I don't have any but don't offer any further explanation. My experience is that just a couple of minutes of small talk inevitably leads to a situation where I feel I have to explain about my cancer.
 
This issue occurs in any social situation involving meeting new people who are unaware of my condition. Katie and I have been to a number of parties since my diagnosis and we've found it really hard to find ways to talk to others without discussing my health. It seems to me that if people are at a party to have a good time the last thing they want is someone telling them within the first five minutes of meeting them that they have late stage cancer; it's something almost guaranteed to dent even the most cheerful party goers mood!
 
If I do tell people about my disease then, in some instances, this had led to them asking questions about my treatment and prognosis which pretty much force me to either let them believe that my cancer is curable or tell them that I'm terminally ill. I have always been very open about my situation but I do find the prospect of shocking or upsetting people to be of real concern.
 
I'm not suggesting any criticism of other people here, I know that this is entirely my problem and may even be something of an unwarranted concern on my part. I often find that writing about something helps me to understand it more fully so maybe I'll find a better way of handling these situations as a result of writing this blog.
 
***
 
Katie and I have had a very busy couple of weeks. I've been feeling pretty good but in the last week I've started to experience some stomach/abdominal discomfort and I'm also finding fatigue to be more of an issue than it has been of late. Overall though I'm still happy with how I'm keeping.
 
We visited Powis Castle in Wales on a gloriously sunny day last week. The castle was built in the twelfth century and has undergone many changes since. The gardens were looking magnificent, here a few photo's from our visit.
 
 



 
 
 

Saturday, 19 July 2014

Lord Falconer's Assisted Dying Bill progresses in the Lords

Friday was a big day for all those who have supported Lord Falconer's Assisted Dying Bill. The Bill was given its second reading in the House of Lords and successfully passed to the next stage of the parliamentary process, the committee stage. It is indicative of the nature of the issue that over 120 peers spoke during the debate with many of them basing their arguments, whether for or against the Bill, around their own personal experiences.
 
As a strong supporter of assisted dying I believe the Lords reached the right decision yesterday and hope that the bill can now move forward, however the obstacles ahead are substantial. One of the main issues relates to the availability of parliamentary time, a shortage of which is likely to result in the Bill being delayed until after the next general election. Future progress may well depend on the attitude of the next government. Given that recent opinion polls show that public support for assisted dying runs at around 70% of the population, I hope that all of the parties will consider including a commitment to progressing the Bill within their election manifestos.
 
On Thursday last week Katie and I attended an event organised by Dignity in Dying in Westminster. The attendees at this event included Lords supporting the Bill together with patrons, staff and supporters of Dignity in Dying. Sir Patrick Stewart, the noted actor, gave a powerful and moving speech in which he explained his own reasons for supporting a change in the law. Lord Falconer also spoke, urging his fellow peers to attend the debate and stay until the end just in case a vote was called. It was impressive to see the passion of all those at the event, their commitment to seeing the law changed gives me confidence that there will continue to be progress and that eventually the political community will catch up with the views of the wider public.
 
It is extremely unlikely that the Assisted Dying Bill will come into force in time for me to be able to benefit from it. I am however committed to supporting its progress as I'm convinced of the significant comfort it will provide to many terminally ill people in the future. The best way you can support the progress of the bill is to join Dignity in Dying.
 
 
 
 
 


Sunday, 13 July 2014

New uses for old drugs

If you're a regular reader of this blog then you may recall that for the last few months I've been taking the drug metformin. Metformin is widely used in the treatment of diabetes however I'm taking it because there is some scientific evidence to suggest that metformin may also have some beneficial effects for people with cancer. As metformin has been around for many years it's cheap and as it has been taken by many hundreds of thousands of people the side effect profile of the drug is known to be relatively low risk. This is quite a contrast to most oncology drugs which tend to be both expensive and to have high levels of potentially dangerous side effects.
 
Metformin is just one of a number of cheap, widely taken non-oncology drugs for which there is some scientific evidence suggesting that these drugs may have anti-cancer effects. Additional research is needed to validate that these drugs really do offer benefits to cancer patients but performing this research requires considerable investment of both time and money. For this reason few commonplace non-oncology drugs have made the transition to being fully recognised treatments for cancer. This is a great pity and seems to me to be a missed opportunity. I was very excited then to learn of a new initiative aimed at encouraging further research into such drugs. The initiative, known as the 'Repurposing drugs in oncology project' (ReDO for short), lists the following aims on its website:
 
  • identify the most promising drugs for further clinical investigation;
  • review and bring to the attention of clinical investigators the data for these drugs;
  • document how these drugs can be combined with existing therapies, or with other repurposed drugs;
  • develop clinical trials to provide positive or negative evidence of efficacy and
  • where necessary, suggest areas where further pre-clinical work is necessary.
    
I wish the people and organisations behind the ReDO project every success in achieving their aims and in seeing some of the drugs through to adoption as recognised treatments. If you want to know more about ReDO there is a good article here.
 
***
 
Katie and I met with my oncologist last week. He was pleased to hear that I've been feeling well and has suggested that I try coming off the steroids that I've been taking. I'm not due to see him now until after my next CT scan at the end of July, at that meeting we'll find out if the cyclophosphamide is working.
 
On Friday last week Katie and I spent the day at the International Air Tattoo at RAF Fairford. Neither of us had been to an air show before and we both enjoyed the day. Without doubt the stars of the show were the Red Arrows. They are celebrating their 50th season of display flying this year and put on a terrific show. It really is incredible how close they fly together - a fantastic example of trusting one's teammates!
 
I've not taken photo's of planes before and had great fun trying. Here are some of the shots that I got. The Red Arrows in formation (click or double click on image to see larger version):
 
 
These guys really do fly very close together:
 
 
I'm not usually in favour of smoking but I'll make an exception in this case:
 
 
To celebrate their 50 year anniversary, the Red Arrows were joined in their display by the team leaders of the Breitling, the Italian, the French and the Swiss aerobatic display teams:
 


Monday, 7 July 2014

A few days in Yorkshire

It's great to be able to write that I've continued to feel well this last week. I do still have a few issues: bloating - my stomach is very distended because of the tumours, occasional mild stomach ache, fatigue and an inability to sleep much past 4:30am (caused by the steroids I'm taking) but these are pretty minor and are not stopping me from being able to enjoy myself. Later this week I'm due to see my oncologist for a routine appointment, hopefully there will be no surprises.
 
***
 
As I've been feeling good Katie and I were able to enjoy a few days in Yorkshire last week. I wanted to return there following a visit last summer during which I photographed gannets at the RSPB reserve at Bempton Cliffs, that was great fun and I wanted to have another go. We stayed in a beautiful cottage near to Bridlington and had a super week with some very nice weather.

The cottage was converted from some old farm buildings and the loft space still provides a home to a family of barn owls. I got this photo from the bathroom window - it was the best vantage point from which to photograph the owl's favourite perch. Now if only I could find a wildlife photo competition that had a prize for 'best photo taken whilst sitting on a toilet' I think this one would have a chance! Click or double click the images to see larger versions.

 
 
The cottage was just ten minutes drive from Bempton Cliffs, here are a couple of the shots of gannets that I got there. Here's an adult taking a good look at me as it soars past:
 

 
The breeding season is in full swing so many of the adults have chicks:
 
 
 
And finally here's one Katie took of me 'in action' at Bempton Cliffs: