An update on last week

I had my regular three weekly appointment with my oncologist on Thursday. We agreed that I'd keep on taking the pazopanib before having a scan in around five weeks time. This is what I expected as I'm not having any side effects that would require me to stop taking the drug.

 

My cancer symptoms are continuing to develop and that has made this last week a somewhat difficult one. The main problem I've been having is with pain. I've not been experiencing this the whole time but each day I have one or two quite lengthy spells when it is present. Most of the problems are in my torso below my chest which is where I have my largest tumours. The pain killers that I'm taking generally fix most of the pain. However, I can only take them once every four hours which, as I found out earlier today, can make for an unpleasant wait if the pain returns before the four hours are up.

 

I continue to get very good support from my local hospice, they are extremely knowledgeable about managing pain. However, I'm beginning to understand that managing cancer symptoms is difficult as any particular symptom may have multiple causes.

 

Katie and I had plans to meet up with friends on three separate occasions this past week. Through some very good luck these all coincided with times when I was feeling fine so we were able to go ahead with all of these. I find that seeing people helps how I'm feeling. We even managed to go to the theatre on Friday night, I wasn't sure that I'd be able to put up with sitting in the same position for the duration of the play but in the end this was ok. We saw a comedy, Alan Ayckbourn's "Things we do for love", which confirmed my view that a good laugh never goes amiss.

 

I haven't been able to do any photography but I think this post is in need to some colour. Here's a Indian Roller that I photographed near Satpura National Park on the 2011 Indian holiday that Katie and I took. There are several species of Roller which are all very colourful. They often like to show off by perching out in the open like this one.

 

 

 

 

 

 

 

 

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.

 

***

 

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.

 

***

 

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!

 

 

 

 

 

 

 

 

Healthy eating, the alternative way

Over the last few weeks I've been struggling to maintain my usual body weight. I've only lost six pounds or so but I weigh less now than I've weighed since coming out of hospital following hydrocephalus back in 2011. Weight loss is a very common symptom of cancer and is also one of the more common side effects of the treatment I'm on so it isn't too surprising that I'm experiencing some problems. I've been given a leaflet entitled 'Coping with a small appetite' that advises on what to eat to try and maintain body weight, I thought I'd share some of its recommendations although I do warn anyone who is on a diet not to read on as you may become rather envious of this alternative approach to healthy eating!

 

Here are some of the recommended foods that I find appealing:

• baked beans or eggs on toast with plenty of butter and topped with grated cheese;
• fried beef burgers or sausages;
• pizza;
• for a light snack eat sausage rolls, scotch eggs, samosas, pork pie, pepperoni, cheese, nachos (with full fat dips and cheese), chocolate or shortbread biscuits, crisps, chocolate or nuts (presumably not all at once!);
• low fat puddings should be avoided. Eat full fat, luxury yoghurts, custard, rice puddings or ice creams;
• other pudding ideas include sponge puddings with custard, cake or crumble with ice cream or custard, waffles or pancakes with chocolate sauce or cheesecake with cream.

This is definitely the bright side. Best of all, when I tuck into my sausage ciabatta at breakfast tomorrow I'll do so with a completely clear conscience for once!

 

   

Our local hospice

It's been an up and down few days since my last blog post though I felt quite a lot better yesterday and I'm hoping that will continue. I've been experiencing periods of intense nausea with Saturday being particularly difficult. The medics think I may have a sub-acute obstruction in my intestines hindering the movement of food through my body. The tumours in my abdomen could be causing this by pressing on my gut. I've been suffering from constipation which tallies with this explanation though I've resolved this for now thanks to copious quantities of laxatives. One thing I've come to realise as a cancer patient is that I end up spending a lot of time discussing bowel movements with doctors and nurses. It's not a subject that I've ever wanted to study in detail but it does seem to be an unavoidable part of this illness - it gives a whole new meaning to the phrase "cancer is sh*t"!

 

I started my new treatment with pazopanib on Sunday. So far I can't identify any specific side effects which is a good start - I'm hoping it continues.

 

***

 

Shortly after I was diagnosed with cancer my doctor referred me to our local hospice, Dorothy House. At the time I recall being rather unsure about engaging with a hospice, there is something very stark about being in a position where one is in need of the services they offer. I had never visited a hospice and I was concerned about what it would be like, it was difficult to imagine that it would feel like a good place to be. Luckily Katie and I did go ahead and meet with a specialist nurse from the hospice and we also visited the hospice for a guided tour. These two experiences removed the concerns I'd had and since then the hospice has been a very useful facility to call upon. In addition to providing residential care for those who are very seriously ill it also offers a wide range of services to people who have serious illnesses but who are not yet near the end of their life. It offers many services too for those caring for seriously ill people. Last week we were able to get the advice of a specialist pain consultant from the hospice and the specialist nurse is incredibly knowledgeable on managing the kind of symptoms people with late stage cancer get. The hospice provides a twenty four hour emergency number too and also works very closely with my doctor. 

 

I know that many people with cancer have similar concerns to mine about visiting a hospice and engaging with the staff. Psychologically it can be difficult for people to accept that they require the help a hospice can provide. From my own experience I would strongly recommend that terminally ill cancer patients seek an early referral to their local hospice, it is far better to meet the people and to visit the place when feeling relatively well than to leave it until later in the day. There is also research that shows that those patients that are referred earlier to hospices have a higher quality of life than patients that aren't referred until much later. I'm very thankful that we have the help and support of the hospice available to us.

 

Hospices rely heavily on charitable donations and represent a very good cause for anyone looking to find a local charity to support.

 

  

Time to try something different

Since my last chemotherapy infusion I've been experiencing an increasing level of symptoms from my cancer. The discomfort and pain I've been getting in my stomach and lower abdomen has increased in frequency and I've also been sick a few times in the last week when the pain has been at its most intense. It was no real surprise to me then when my oncologist called me on Tuesday to tell me that my most recent scan showed that the dacarbazine chemotherapy had failed to halt the progression of my cancer. As well as the tumours in my abdomen, the tumours in my liver and lungs have also grown. Time then to discontinue the dacarbazine and try something new.

 

Up until now all the drugs I've taken to treat my LMS have been classic chemotherapy agents. They act by directly killing the cancer cells. Most classic chemotherapy agents are toxic substances which is one reason why they have such significant side effects. My next treatment will be pazopanib. Pazopanib is not a traditional chemotherapy agent; it works by trying to stop the growth of the blood vessels that are needed to supply tumours with oxygen and nutrients and by blocking the take up of enzymes that are important drivers for cancer cell growth. Pazopanib is taken in tablet form which makes it a lot more convenient than intravenously administered treatments.

 

Pazopanib has not been formally approved for use in treating LMS in the UK but it has been included on a list of drugs that can be accessed for this purpose through the cancer drugs fund. It's a relatively expensive drug and I really appreciate it being available to me through the fund, if it wasn't for the fund it might not be possible to obtain it via the NHS.

 

I was very impressed today with the efficiency of my oncologist and the NHS processes. Since reviewing my scan result on Tuesday my oncologist has consulted my cardiologist to confirm that my heart problems don't preclude me from taking pazopanib and obtained approval for funding the drug from the cancer drugs fund. As a result he was able to send me home today with the tablets which I plan to start taking on Sunday.

 

So how likely is it that my cancer will respond to this new treatment? According to the limited data available around 50% of patients with soft tissue sarcoma were found to have tumour growth blocked by pazopanib. A small number of these patients (< 10%) had some shrinkage of their tumours. At this stage in the game halting the growth of my tumours would be a successful result. The duration for which pazopanib continues to work varies considerably from person to person, looking on the bright side there is a recent study that records one patient who continued to respond to treatment for over three years although this person is very much part of the 'long  tail' that often occurs in statistics on drug responses.

 

Possible side effects from pazopanib are far to many to mention here. My main concern is that it doesn't cause any serious heart problems for me. I will be seeing my cardiologist a week after I start treatment so he can review how I'm doing.

 

***



Katie and I spent a couple of days in London earlier this week seeing family and friends. We also managed to do some sightseeing with visits to HMS Belfast, the Museum of London and London Zoo. As usual we really enjoyed our visit to the capital. 

 

I've not taken many photo's these last weeks however I did get the following shot at the Wildfowl and Wetland Trust reserve at Slimbridge. For those non-bird watchers reading this you probably think of  a mallard when you think of a duck but actually there are many duck species that can be found in the UK, most of which have elaborate plumage. This is a Northern Pintail, one of the most elegant of them all: