Three years on

Today is the third anniversary of the day on which I learnt that I have LMS. Before writing this I read the corresponding entry from my blog for last year, I was pretty upbeat in that post. In many ways it has turned out that my positive outlook was justified as 2013 was a good year with lots of very enjoyable times. We never did make the trip to Africa that I mentioned there, in the end we felt we couldn't risk taking a break in the treatment, but we did travel to some fantastic places in the UK and saw some great wildlife in the process.

 

I find it much more difficult to write with such optimism this time around. Since the failure of the trabectedin in November last year my condition has been slowly deteriorating and has begun to compromise what I can and can't do. The title of this blog always gives me pause to consider 'the bright side' however and I can certainly find some positives to mention. First, I've only been taking pazopanib since the 6th April, I'm still hopeful that it is working even though I haven't been able to identify any improvement in my condition so far. Second, despite being unable to go for long walks, I can still walk a couple of miles or so, at least on most days. Finally, as a Liverpool supporter, my football team are doing their very best to bring a smile to my face!

I also recognise that I'm very fortunate to have made the third anniversary of my diagnosis, the odds against this were considerable. When I was initially diagnosed I was told that it was likely that I would only live for a few months.

 

The future is looking very uncertain at present though things should become much clearer once I have my scan. This should take place during the last full week in May. If the pazopanib is working then my immediate future will be much easier to be positive about.

 

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Back in 2012 I wrote a blog post entitled 'Bad pharma?', the name referred to a book by Ben Goldacre on the pharmaceutical industry and the development and marketing of drugs. Many of the issues raised by Goldacre's book have recently been illustrated here in the UK in relation to Tamiflu. The UK government spent around half a billion pounds on Tamiflu to help protect the nation in the event of a flu epidemic, however a new independent review of the research evidence suggests that Tamiflu doesn't work all that well after all. For several years, Roche, the producer of Tamiflu, did not release all of the relevant research data into the public domain preventing a fully comprehensive evaluation of the drug. After several years of lobbying, Roche released this data allowing a more complete analysis of the drug to be made. Ben Goldacre has written an excellent article on this story.

 

One of the things I like about Ben Goldacre is his very pragmatic approach to driving improvement in the pharmaceutical companies behaviour, this is clearly shown in the final paragraph of his article where he writes:

 

"Finally, more than anything – because culture shift will be as powerful as legislation – we need to do something even more difficult. We need to praise, encourage, and support the companies and individuals who are beginning to do the right thing. This now includes Roche. And so, paradoxically, after everything you have read above, with the outrage fresh in your mind, on the day when it feels harder than any other, I hope you will join me in saying: Bravo, Roche. Now let's do better."

 

The full review of Tamiflu and a related drug, Relenza, is publicly available from the Cochrane Library.

 

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To finish, here are a couple of the very few photo's I've taken this month. These show the historic pier at Clevedon, near Bristol. The pier was 'pier of the year' in 2013 - yes, there really is a 'pier of the year' award!