A bit of spring sunshine

The run of beautiful weather has continued this week; it is easy to imagine that it must be June rather than March. On Monday Katie and I enjoyed a walk from Marlborough through the Savernake Forest, it was slightly strange to be walking through woods in which the trees are barely in bud but with the temperature into the 20’s. Despite the bare trees spring is in the air with the woodland birds pairing up and singing out their claims to breeding territories.

Today I had a routine appointment with my oncologist. The heart scan I had a couple of weeks back hasn’t shown any problems and although my blood counts are still a little low they should be good by Monday so things are looking positive for the next round of chemotherapy. The oncologist has agreed to modify the anti-sickness drugs that I am taking to see if that will control the week long nausea that I've had each cycle. 

My oncologist confirmed what I already knew from reading about the experiences of other patients: I have been pretty lucky so far with the side effects from the Doxorubicin. He said that many people are too poorly to work when they are taking this drug let alone to be out completing ten mile walks.

Over the last couple of months I've been entering various photography competitions. So far I haven't managed to win any of them but I've had several pictures shortlisted or in runner up spots. This week one of my images was "highly commended" in the wildlife section of the 2012 Audley Travel photo competition. There were around 1800 entries to the wildlife category and judging was done by a professional wildlife photographer so I was pleased that my photo made the top ten. My image is the second one down and shows two young chimp brothers playing together in the Chambura Gorge in Uganda:

http://photocomp.audleytravel.com/Winners 

Update on latest chemotherapy session

On Monday I received the second of the six planned infusions of Doxorubicin. I decided not to post for a couple of days so I could get a better feeling for how the side effects from this cycle compared to the last.

Overall I have had fewer side effects this time around. I've been feeling nauseous and as of this afternoon I have also developed some abdominal discomfort/pain. Both of these effects are milder than at the same time in the last cycle however. Hopefully by the weekend I should be starting to get back to normal. I’ve read a few horror stories from other LMS patients receiving Doxorubicin so I really have to be very pleased with how well I seem to be tolerating it so far.

I have an echocardiogram scheduled for Monday next week to monitor my heart function. Doxorubicin is cardiotoxic so regular checks on heart function are a common safety precaution used during treatment though a recent scientific study has questioned the value provided by this form of monitoring. I’m not expecting the scan to reveal any problems as I don’t have any symptoms that could indicate a problem though if there is one thing I have learnt over the last year it is never to take the outcome of medical tests for granted! 

The cardiotoxicity of Doxorubicin means that there is a maximum recommended lifetime dose; generally this dose limits patients to having only one course of treatment which is unfortunate for those whose tumours prove to be responsive to it.

After I had the chemotherapy on Monday Katie and I had lunch at Brasserie Blanc in Bristol and very nice it was too! If you are in the area and are looking for a good value, good quality meal then you can't really go wrong there; £11.50 for two courses from a small but interesting menu. I've eaten there several times over the last eighteen months and everything I've tried has been good or excellent.

Thoughts on an anniversary

There are three dates from last year that stick in my mind in relation to my illness. February 27th was the day I was rushed into Frenchay hospital to undergo emergency surgery to relieve the acute hydrocephalus I was suffering from; March 9th, one year ago today, was the day I was told that a CT scan had identified that I had tumours and April 19th was the day I learned that I had Leiomyosarcoma.

One year on from getting the results of the CT scan I still remember vividly how it felt to be told that I had tumours. I was still in hospital recovering from the hydrocephalus whilst the doctors carried out various tests to try and identify what had caused it. On the afternoon of March 9th I was expecting a visit from the neurologist to discuss the results of an earlier CT scan. When he entered the ward the expression on his face told me all I needed to know, it was immediately clear that the scan must have revealed something unwelcome. I was relieved that Katie was with me so that we could hear the news together.

Prior to becoming ill I had given a little thought to what it would be like to be diagnosed with cancer, not least because my family history on my father’s side has been plagued by the disease, when it comes to the reality though this is not an event that it is easy to rehearse for. The scan had identified a mass in my lower abdomen and also a number of masses in my liver. The neurologist said that he and his colleagues were almost certain these were tumours. His words were quietly spoken but their effect was shocking and stunning. I’ve never been on the receiving end of a tackle from Matt Banahan, the six foot seven inch tall, eighteen stone Bath Rugby wing, but I imagine the impact would be similar.

The neurologist went on to explain that I would need to undergo a biopsy and other tests to enable them to identify the exact nature of the tumours. He also said enough to leave Katie and me in no doubt about the seriousness of my situation. After the neurologist left a nurse very kindly made us a cup of tea. Drinking tea may seem like a very clichéd British response to the situation, but it did at least help us to recover a little composure! 

If I had known a year ago that my health would be as stable as it has been then I think I would have been very pleased and relieved; in such uncertain situations it is very easy to spend time dwelling on the more negative possibilities. Realistically I have very little ability to influence the future course of events, so spending time worrying about what might be is not, in my view, a very productive use of my time. I think that is a useful philosophy for me to take forward into the next twelve months. 

Genetics – a double edged sword

I think that most people who are diagnosed with cancer must occasionally wonder what caused their disease. Of course it is generally not possible to be sure why most individual cancers occur, though as everyone knows there are many risk factors that significantly increase the chance of someone getting one or more forms of the illness. For LMS, however, there are actually very few known factors that increase risk.

Since my father died of cancer back in 2001 I have been aware that many of my relatives on that side of the family also had cancer. Last summer I had some testing done which confirmed that I have a genetic abnormality which massively increases cancer risk. I have a faulty copy of the TP53 gene. You probably haven’t heard of this gene but it is vital in preventing cancer; the gene produces the P53 protein which kills cells that have become cancerous.

Technically speaking this gene defect combined with my family history means that I have something called Li-Fraumeni syndrome (discovered by doctors Li and Fraumeni). Whilst people who have this syndrome are at increased risk of getting many forms of cancer there are some cancers that are particularly associated with the condition, sarcoma is one of these. It is likely then that my defective TP53 gene has played a significant role in the cause of my LMS. Luckily Li-Fraumeni syndrome is very rare, figures vary but it seems that there are only around 1,000 families worldwide that have actually been diagnosed as suffering from it.  

Whilst genetic factors sometimes explain the causes of cancer, genetics also provides a potentially exciting avenue through which cancer treatment may be improved. I was recently asked if I would be willing to take part in a research programme that is looking to collect the genetic profiles of one thousand individuals suffering from Sarcoma together with a history of the treatments they have had and how effective these have been. The hope is that the research may show that certain genetic characteristics can act as indicators as to which treatments might be most effective for an individual with a given genetic profile. The research is also looking for additional genetic markers that may indicate a higher risk of developing sarcoma.

I've spent quite a lot of time over the last year reading and learning about LMS; it's really clear to me how little is known about this cancer and its treatment. It is great then to have the opportunity to participate in a research initiative that could possibly shed some more light on this disease and its treatment. Who knows, this research might even find something that can be useful in my own treatment.

Back on form

Since Friday last week I’ve been feeling much better; the side effects I described in my last post have all but gone. My next chemotherapy treatment is scheduled for a week Monday so I am hoping to have the whole of next week with no further problems. Hoorah!