Backing a long shot

Together with many other cancer patients what I want most is a research breakthrough that will provide a new and much more effective way of treating my illness. Since being diagnosed in 2011 I've been following various research initiatives, one of which has developed into a recognised new treatment for Leiomyosarcoma. Unfortunately the effectiveness of this new treatment is limited and, whilst it's certainly a useful addition to the existing options, it doesn't fundamentally change the balance of power between the disease and the patient.  It does demonstrate however that new treatments can emerge in a timeframe of help to me.

 

There is one research programme that may offer the possibility of something better. Researchers at Stanford University are trying to unlock the potential of the human immune system to destroy cancer cells. They have identified that many cancer cells have, on their surface, a protein that acts as a "don't eat me" signal to macrophage cells. Macrophages are cells of the immune system, their job is to identify aberrant cells within the body and destroy them. Macrophages would normally be expected to target cancer cells but the "don't eat me" signal prevents them from doing so protecting the cancer and allowing it to grow.

 

This mechanism reminds me of being on safari in Zambia. If I was to stand ten yards away from a lion in South Luangwa national park I'm pretty certain the lion would attack me, however if I sit at the same distance in a totally open jeep the lion doesn't see me as a target. The jeep is a powerful "don't eat me" signal to the lion - so powerful that thousands of safari goers literally trust their lives to it every year.

 

The Stanford researchers have found a way of blocking the cancer cell's "don't eat me" signal so that the macrophages see the cancer cells for what they are. When a mouse, into which human tumour cells have been transplanted, is treated with an antibody that blocks the signal the mouse's immune system destroys the cancer cells. One of the things that is really significant about this research is that this "don't eat me" signal is found in many different types of cancer. This leads to hope that this treatment will be effective against many forms of the disease. LMS has been identified as one of the cancers that this treatment may be effective against.

 

My explanation here is an over simplification of what is really going on, but it does give a flavour of how this research hopes to deliver a significant blow against many cancers. The researchers are planning to launch human trials either late this year or early next. I know of no more exciting development in LMS treatment research than this. The odds of this being an effective treatment in humans are still very small but at least we have a horse in the race.

 

You can read more about this research here.

 

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As I mentioned lions above these seem like appropriate pictures with which to end this post. These fine looking animals are residents of Chester Zoo. No "don't eat me" signal was required to take these pictures - the wire fence was enough!

 

 

 

 

An afternoon as a sports photographer

I had a really enjoyable time this afternoon courtesy of Bath Rugby. A couple of months ago Katie contacted them and asked if it would be possible for me to have a press photography pass for one of their matches. The club were happy to help and so today I got to pretend to be a professional sports photographer at the LV Cup game between Bath and their west country rivals Exeter Chiefs.

 

Sports photography isn't as easy as it may look. Within a few seconds of the match starting Bath scored a try pretty much directly in front of where I was sitting. The attacking move was so quick and the try so close that I completely failed to get any shots of Bath crossing the line! Bath then went and gave a repeat performance straight from the restart, I did a little better that time around but still wasn't fast enough to capture the peak action. Sitting low down just a couple of yards behind pitch provided a pretty spectacular position from which to view the game. The speed and power of the players is really impressive up that close.

 

I took eight hundred photo's this afternoon so I haven't had chance to sort through them yet, however here are a couple from those first two tries. Bath's Carl Ferns makes the break that leads to the first score:

 

 

 

Winger Mat Banahan runs through a tackle on his way to setting up the second try:

 

 

 

Many thanks to Bath Rugby for making this possible and to Katie for organising it for me.     

 

 

The Phoney War

My current chemotherapy cycle has been going very well so far. I had just a week or so of relatively mild side effects. The fluid retention has been a lot better these last few cycles which is a big relief as putting on large amounts of weight in just a few days isn't fun.

 

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Apart from one break of a few months, I've now been on chemotherapy since April 2011. In the absence of any significant symptoms, my experience of my illness is defined by the repeating cycle of three months of treatment followed by a scan. Even with the relatively mild side effects I've been experiencing there is something psychologically difficult knowing that I can only get off this particular treadmill when there aren't any good treatment options left for me. 

 

It occurred to me that my situation has some parallels to what it may have been like during the 'Phoney War' period that occurred in the months between the German invasion of Poland in September 1939 and their attack on France in May 1940. Britain and France were both at war with Germany but there was very little combat involving these three nations. People knew that the storm was approaching but had no idea when it would arrive. I imagine that some people reacted to the waiting and uncertainty by wishing that the real war would start so they could face whatever fate had in store for them and, hopefully, then get on with their lives.

 

In the context of my cancer I sometimes experience a strong sense of wanting to ‘get on with it’, that is of wanting to move past the current phase of my illness to face what is coming next. I think that this feeling comes from a wish to get something that is both scary and daunting out of the way as soon as possible. In many situations this kind of emotion would be reasonable but in my situation it really doesn’t make sense. Perhaps my emotional self is still to fully accept the reality of my position. 

 

For now I feel that the best way to try and deal with these emotions is to avoid looking too far into the future. Thinking about an on-going repetition of chemo punctuated by the anxiety of waiting for scan results or, worse still, coming to the end of my viable treatment options doesn’t do me any good. By focusing only on the short term future I hope to avoid having my enjoyment of today spoilt by the knowledge of what lies ahead.



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Here's a photo from Westonbirt Arboretum taken last week, I like the colours in this one:

 

 

Awaiting autumn colours

I had my latest chemotherapy treatment on Tuesday and Wednesday this week. The treatment went fine and although I'm now experiencing the usual side effects that I get for the days immediately after receiving the drug I'm feeling ok. I will be due for my next treatment in four weeks time.

 

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I went out last week and took this photograph looking over Bath city centre from Widcombe Hill, as you can see there isn't much in the way of autumnal colour in the trees yet.

 

This view of the city shows the Abbey and the Empire Hotel with the Royal Crescent in the background. The colours should be very good in a week or two, hopefully the sun will put in a appearance so I can get some nice shots.

 

Cancer drugs fund

The government recently announced plans to extend the availability of the cancer drugs fund until March 2016. The fund was introduced in 2011 to allow oncologists and cancer patients to access drugs that had not been approved for general use in the NHS and was due to end in April 2014.

 

Personally I'm very pleased by this news. Patients with rare cancers like Leiomyosarcoma (LMS) generally have very few treatment options. The National Institute for Health and Care Excellence (NICE) is responsible for approving new drugs for use in the NHS, however decisions are sometimes taken not to submit a drug to the approvals process because the number of potential users is low and the cost of the process high. Such decisions can leave those with rare cancers unable to access drugs from which they could benefit. One such drug is Pazopanib, This drug is beneficial to some patients with LMS, however NICE decided not to take the drug through the approvals process. This is where the cancer drugs fund comes in, LMS patients can get access to Pazopanib through the scheme. Pazopanib is likely to be my next treatment when I finally have to move on from Trabectedin so it is great to know that funding for it should be available.

 

Like a lot of health policy initiatives the cancer drugs fund is not without issues. The NICE drug approval process gives NICE considerable power to negotiate a good price for the drug with the drug manufacturer. Some feel that the cancer drugs fund weakens this negotiating power as drug companies know that patients will be able to access their drugs through the fund without NICE approval. This may lead to higher costs for drugs. When NICE approved Trabectedin, the drug I'm currently being treated with, they did so on the basis that the drug manufacturer would only charge them for a maximum of 5 treatment cycles per patient. If the manufacturer had not made this offer NICE may well have rejected the drug. I've now had 17 cycles of Trabectedin, 12 of which have been funded by the drug company. Each cycle costs around £3,500 so the NHS has saved over £40,000 through the deal NICE negotiated. Trabectedin was approved before the drugs fund came into existence, it is interesting to speculate if the drug company would have accepted the same deal if the cancer drugs fund had been in place back then.

 

Despite this issue most stakeholders seem to support the extension of the fund. My oncologist says that he and his colleagues like the flexibility that the fund gives them in selecting treatments, cancer patients are pleased to know they can get the drugs they need and cancer charities as supportive too. The fund costs around £200 million a year to run, money well spent in my opinion.

 

I will be going ahead with my next cycle of chemotherapy on Tuesday (blood tests permitting) and will have my next scan at the end of November, so for now I don't need to access the fund.

 

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I've been out and about in Bath with my camera. Bath Abbey is one of the most striking buildings in the city and contains some beautiful stained glass windows, the one shown below is my personal favourite. In 973 Edgar, the first king of all England was crowned in Bath. This 19th century window commemorates Edgar's coronation. The man crowning Edgar is his Archbishop of Canterbury, Dunstan (later St. Dunstan).   

 

 

  

More fun with my PICC line

Ahead of last weeks chemotherapy I had to have a new PICC line inserted into my arm. Normally a PICC line is held in place with a dressing could a 'stat lock', but the skin on my arms has become sensitive to sticky dressings of any sort and I get an itchy, blistery reaction to them now. The previous PICC line, the one that seems to have caused my recent infection, had been stitched directly into my arm to hold it in place. The problem with stitching the PICC line in however is that it makes it difficult to clean the skin around the area properly, something that might increase the risk of another infection. This time around I decided that I would revert to using a 'stat lock' but that I'd have a layer of 'liquid skin' applied to my arm first so that the adhesive of the dressing wouldn't be in direct contact with my arm. I went ahead and had the PICC line fitted in this way a week and a half ago, unfortunately by Wednesday night this week it was clear that my skin was still unhappy with the adhesive and yesterday I had to go back to the hospital and have the PICC line stitched in place. Not an ideal situation but it'll have to do for now!

 

My most recent treatment cycle is going well and the side effects have been quite manageable, a little extra fatigue being the most persistent of them but that has decreased somewhat in the last couple of days. 

 

This is a great time of year for fungi, I like this shot that I got last week:

 

 

   

 

 

Stephen Hawking & assisted dying

Stephen Hawking, the well-known theoretical physicist who has suffered from motor neurone disease for much of his life, has been in the news this week after speaking out in favour of assisted dying. Assisted dying is where a terminally ill person is helped to end their life by another person, usually a doctor or sometimes a relative. Hawking is quoted by the Daily Telegraph as saying:

 

"Those who have a terminal illness and are in great pain should have the right to choose to end their own life and those that help them should be free from prosecution".

 

Assisted dying is illegal in the UK though over recent years there has been increasing debate as to whether the law should be changed, this increased interest has been the result of some high profile cases in which those who wish to utilise assisted dying have sought legal guarantees that people that help them to die would not be prosecuted.

 

I am strongly in favour of a change in the law to permit assisted dying. There are undoubtedly many terminally ill people who would benefit greatly from the reassurance that would be provided by knowing that they could take control of the timing and manner of their own death and that anyone who assisted them would not be prosecuted. I have thought a lot about this since my diagnosis in 2011, to me the process of dying is more frightening than the idea of death itself.

 

The main argument against assisted dying seems to be the very valid concerns that vulnerable people could be coerced into consenting to have their lives ended or that some people might even use assisted dying as a cover for murder. These concerns could, I believe, be addressed through the implementation of a comprehensive system of safeguards. These could include restricting the right to assisted dying to a subset of terminally ill people chosen using criteria that provide the highest level of confidence that the wishes they express are really their own. Any law would also have to guarantee the right of medical professionals to decline to be involved in assisted dying if it is not aligned with their personal beliefs or ethics.

 

Another argument that is put forward by some is one based on religious grounds. I respect the right of others to hold religious beliefs and to use these to shape the way they live. However a change to the law would not force anyone to utilise assisted dying, a person with religious beliefs would be under no pressure to opt to end their life this way if they were to find themselves suffering from a terminal illness. They would, therefore, be completely free to follow their beliefs. As an atheist, I object strongly to other people trying to impose their religious beliefs on me, I respect their right to choose but ask them to respect my right too.

 

Another argument I have seen advanced against assisted dying is that palliative care has now advanced to the point where nobody needs to endure a painful and distressing end. I spoke to a nurse from our local hospice about this. She works day in and day out with people who are dying. She told me that even with the very best of care she could not say that people always had deaths free from pain and suffering. There could, she said, be no guarantees.

 

Assisted dying is legal in a number of countries around the world. According to the campaign group 'Dignity in Dying', the evidence from these countries shows that assisted dying laws with appropriate safeguards effectively address the concerns noted above.

 

If you are interested in supporting the 'Dignity in Dying' campaign for a change in the UK law you can find their website here.