Sunday, 13 April 2014

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!

Wednesday, 9 April 2014

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.

Thursday, 3 April 2014

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:

Friday, 21 March 2014

Chemo's common companion says hello

Yesterday I finally experienced one of the commonest side effects of chemotherapy. I had my third infusion of dacarbazine which went without problems for the first forty minutes or so, then I began to feel nauseous. By the time the infusion was completed I was feeling very green indeed. It was hot in the chemotherapy day unit and I thought I'd feel better once I got outside into the fresh air, unfortunately I only made it to the oncology centre car park before I began to be sick. That lasted for about an hour, it was an interesting experience being driven back to Bath by Katie whilst repeatedly throwing up - not one I can recommend! Luckily the hospital had given us a number of cardboard bowls so at least it wasn't messy (see, there is always a bright side if you look hard enough!). I went to bed when I got home and felt a little easier after I'd had some sleep. I'm still feeling nauseous today but not to the same extent as yesterday. It just goes to show that you can't make any assumptions about how each treatment is going to go, every one can offer a surprise.
I spend a considerable amount of time researching my illness and possible treatments for it. As part of this I often read scientific papers that present the results of clinical trials and other research. A few months ago I read a report on a piece of research that had been done by a UK based team. This looked at the quality of life of people with advanced soft tissue sarcoma (ASTS). I was interested in this paper for two reasons, first because LMS is a type of STS and secondly because quality of life is one of the factors often considered by regulators when deciding whether a new treatment for a condition is cost effective. Simply put a costly drug that fails to provide a decent quality of life for patients may not be worth funding even if it extends the lives of those patients.
The report that I refer to above is entitled "Utility Values for Advanced Soft Tissue Sarcoma Health States from the General Public in the United Kingdom" and was co-authored by Julian F. Guest, Erikas Sladkevicius,  Nicholas Gough,  Mark Linch  and Robert Grimer. The authors of the paper are all involved in research into and/or treatment of sarcoma. The lead author, Julian Guest, also runs his own consultancy business through which this research was conducted. The full report is freely available at this link.
When I read the report I had a number of concerns about the methodology used in the research and the conclusions that the report seemed to support. I'm not one for writing letters to the authors of scientific papers, I've never done that before, however in this case I felt that the research was flawed and could be damaging to the interests of ASTS patients if used by regulatory authorities in their assessment of new treatments.
My main concern about the research was that it involved asking members of the general public to estimate their preferences for various health states associated with different responses to chemotherapy treatment for ASTS. My own experience convinces me that members of the public, most of whom will not even have heard of soft tissue sarcoma, are unlikely to be able to anticipate how they would react to being diagnosed with an advanced form of this disease let alone to meaningfully comment on how they would feel about various health states following chemotherapy treatment for the illness.
I remember well my own initial reaction to my diagnosis which was to fear that I would be unable to enjoy anything in life with this illness hanging over me. I remember too how quickly I adjusted and found that I could enjoy so many things just as I had before I was ill. There is no reason, other than time and cost, that prevented the research being conducted on patients who actually have ASTS. As the authors have themselves accepted in their replies to my concerns, this would be the preferred option for this type of research. I find it interesting to note that two other quality of life studies that did use ASTS patients rather than members of the public both provided higher quality of life estimates than the UK study.
I also have a number of concerns regarding the descriptions of the health states used in the research. Whilst I accept that these seek to describe the experience of the average ASTS patient I found them to be written so as to preclude a reader from understanding that those in each state could have a much more positive experience than suggested by the descriptions. Indeed, some of the health state descriptions preclude a patient from having experiences that I myself have had whilst in those health states.  
Having initially shared my concerns with the authors of the paper they provided a reply and suggested that, if I was not satisfied, I should write to the editor of Sarcoma, the journal that published the paper. On receipt of my letter the editor asked the authors for a response which they duly provided. Unfortunately, the editor of Sarcoma has informed me that they are unable to publish either my letter or the response from the authors, however I want to make sure that my concerns are in the public domain and so have decided to share them here. Below I provide links to my letter to the editor of Sarcoma and the response from the authors of the paper.
For completeness, I also include my rather more detailed initial letter to the authors of the report and the response I received from Dr Mark Linch, one of the co-authors.
I'm very supportive of research into patient quality of life in ASTS and other cancers. Such research is of great importance in helping doctors, patients and regulatory authorities decide when certain treatments are appropriate and cost effective. However, research into this topic must be done to the highest standards if it is to be used to make crucial decisions that will have a tremendous impact on patients and their loved ones. In my view, short cuts are not acceptable.

Friday, 14 March 2014

The bad news and the good news

Yesterday I had my regular consultation with my oncologist. The second cycle of dacarbazine chemotherapy has been going well with minimal side effects from the treatment, however in the last month I've noticed an increase in symptoms from the cancer. I've been experiencing abdominal discomfort most days with short periods of intense pain. When I have the pain I also have a strong feeling of nausea. The discomfort is made worse by walking and is limiting my mobility a little. The ten mile walk Katie and I did around four or five weeks ago is not something I could contemplate repeating at present. In addition to these symptoms I'm now sure that the several small tumours that I have on the surface of my skin are growing. I discussed the symptoms and the tumour growth with my oncologist and he agrees that it is likely that the dacarbazine is not working.
I have a CT scan of my abdomen and chest scheduled for the 26th March so we have agreed that I will go ahead and have the third cycle of dacarbazine next week and that we'll then review the scan results to determine if we need to switch treatments. We discussed what options there are available as a next step. My oncologist has recently presented my case at a meeting of the British Sarcoma Group, he was hoping to get some ideas from his colleagues who may have seen cases like mine before. Unfortunately there were few suggestions other than one idea that we try a chemotherapy regime normally used in ovarian cancer. This has a good record in tumours with no functioning TP53 gene which we suspect to be the case in my tumours too. This would be a speculative treatment as this chemotherapy regime is not used in Leiomyosarcoma and there is no trial based evidence to suggest it would work. I've identified another chemotherapy agent, eribulin, as an option as it has been shown to work in around 30% of LMS patients in a single, small trial.
Yesterday's consultation really brought home to Katie and I how close we are to running out of viable treatment options. There is always going to be another drug I could try but you have to question whether undergoing treatments for which there no good evidence of effectiveness is sensible, especially when those treatments can cause very serious side effects.
Following yesterday's rather bleak discussions we had some good news today when I saw my cardiologist. The purpose of the meeting was to discuss whether I can take pazopanib. This is a new treatment for sarcoma but has the results of a fairly large phase III trial supporting its use. Pazopanib was the preferred treatment option for me following the failure of trabectedin back in November but concerns about my blood pressure and heart condition meant that it was judged too risky for me. Well now the cardiologist has agreed that given the lack of other options I can go ahead with pazopanib. I'll need to have my heart function and blood pressure closely monitored and there will be an increased risk but this is something I'm willing to accept. I'm very relieved that this is now an option. The doctor I saw today was a registrar and she needs to discuss this with the consultant so the position could change but we're hopeful it won't.
So if the forthcoming scan shows the dacarbazine is not working the intention is that I will switch to pazopanib. It's a relief to have a clear way forward with a drug that has a fair chance of at least stabilising my disease.
Katie and I went to the Wildfowl and Wetland Trust reserve at Slimbridge the other day. For the last few years the WWT have been working to reintroduce the common crane into south west England. They've been hatching imported crane eggs at Slimbridge and then releasing the young birds on the Somerset Levels. The hope has been that once old enough the birds would breed on the Levels and establish a sustainable population. Cranes were once common in England but are now very scarce indeed with the last pair breeding in the south west over four hundred years ago. Some of the released birds are now reaching breeding age, amazingly last year a few of them showed up at Slimbridge and a pair tried to breed, unsuccessfully unfortunately. They are back again this year and were busy building a nest right in front of one of the hides. They are very large birds with a very distinctive look as you can see in the pictures below. As they are part of the reintroduction project they have radio trackers and are conspicuously ringed. Let's hope they successfully rear chicks this year.


Thursday, 27 February 2014

A trip to Northumberland

This morning I had my second dacarbazine chemotherapy treatment. As mentioned in my earlier post, we have increased the dose by 25% compared to the first cycle. The new dose is typical for use in patients with sarcoma, I initially had a lower dose so that we could understand the level of side effects that I would experience. In fact the first cycle of dacarbazine has been the most trouble free chemotherapy cycle I've ever had, I'm expecting that this second cycle will be a little more problematic as a result of the higher dose but I'll just have to see how it goes over the next few weeks.
I keep a count of my chemotherapy cycles, this current one is the 30th that I've had since starting treatment for Leiomyosarcoma back in April 2011. Some people with advanced LMS are rather sceptical about the benefits of chemotherapy, especially in light of the very severe side effects that people may suffer. My own experience has been a positive one: not only have the side effects been generally manageable, the treatment itself has, in my view, significantly extended my life. Of course this is just my impression and, from a scientific perspective, is merely an anecdote but it does mean that I'm personally very comfortable with the treatment path that my oncologist has been recommending to me and that I have chosen to follow since my diagnosis. There is a relatively low chance that the dacarbazine will actually do me any good, but even if my next scan shows that it hasn't worked that won't change my view on the value of chemotherapy for those with advanced LMS.


Katie and I recently made a three night trip to Northumberland. Given the windy and rainy weather that has been with us for weeks we really did wonder if this was a good idea, however we decided to take a chance and go anyway. As luck would have it our two days of bird watching on the Northumberland coast coincided with a real improvement in the weather and we enjoyed a lot of sunshine during our trip.
We spent some time sat in a hide over looking the Island of Lindisfarne. The sea was a shade of turquoise more usually associated with the Mediterranean than the north coast of Northumberland in February, the vegetation was golden and the sky blue.  It was very relaxing just being there enjoying the view.
We hired a local wildlife guide to take us out on the first day of our visit. We've used him once before back in 2009 and we had another very good day this time around. Whilst Katie and I are reasonably good at identifying birds we would miss quite a lot without the help of a guide. The guide has written a blog entry on our trip for anyone interested in the details.
I didn't take any pictures so I've picked this from one of our previous visits to the area. This is a shag, a relative of the more common cormorant. I think this bird is really very stylish with striking green eyes, yellow on the bill and an iridescent green sheen in the plumage.
During our trip we stayed at the Red Lion at Alnmouth, a very nice traditional pub that we've also stayed at on our two previous trips to the area. I recommend it if you're looking to visit. 

Saturday, 22 February 2014

Side effects, what side effects?

I'm due to have my second cycle of dacarbazine chemotherapy next week so I had my routine pre-treatment appointment with my oncologist on Thursday. Overall I've found the first cycle with this new drug to be the best I've experienced in terms of side effects - basically there haven't been any. This is pretty unusual and I've found myself wondering if the saline mixture I was infused with actually contained any dacarbazine! My oncologist was quick to remind me that I shouldn't assume the next cycle will be so trouble free.
We've decided to increase the dose of dacarbazine by 25% next week. I'm expecting some side effects but I'm hoping they will be quite mild given the experience from last cycle.
The oncologist gave me a copy of the radiology report from the CT scan that I had back on the 30th January. The purpose of the scan was to provide a baseline on tumour size that we will use to compare with my next scan, due in around five weeks time, which will be used to determine if the chemotherapy is working. I'd been off treatment for around eight weeks before the 30th January scan, during that time we knew that the cancer was growing and this was confirmed by the scan results. The tumours in my lungs, liver and abdomen had all increased in size. The good news is that the radiologist didn't raise any urgent concerns regarding this growth and he also didn't identity any new tumours elsewhere in my body.
My health has been generally good over the last three weeks although I have been getting more symptoms from the cancer since I stopped taking steroids a week ago. The most significant of these are constipation and stomach/abdominal pain. The pain is easy to manage as it tends to be transient in nature and responds quickly to paracetamol. The specialist nurse from our local hospice had warned me to expect additional symptoms once I discontinued the steroids, this is because the steroids suppress the inflammation that the tumours cause and without them this increases causing pressure on other organs.
My oncologist also asked me to continue to refrain from driving until he has spoken to a lymphoma consultant colleague of his. He said that he thinks it likely that I will not be judged safe to drive.
Not being able to drive is going to be a bit limiting in terms of my wildlife photography. Katie is happy to drive me to places but I like to spend a lot of time taking my shots and sitting around watching isn't much fun for her. One of the great things about photography is that a constraint on what or how you can shoot can sometimes help you to be more creative. Here are a few shots from February that were all taken within a mile walk of our house. Hopefully I'll find lots more subjects in the coming months.