Sunday, 29 January 2012

Next chemotherapy course

As anticipated in my last post, Katie and I have decided that I should start my next course of chemotherapy sooner rather than later. I am now due to resume treatment on Friday 17th February.

The chemo agent that I will be using is called Doxorubicin. This is given as a single, thirty minute infusion administered once every three weeks. The course involves a total of six infusions so, if all goes to plan, this treatment will last for eighteen weeks. I will have a CT scan after the first three infusions that will enable the doctors to determine if the treatment is working. As with most chemotherapy drugs there is a long list of possible side effects though one that is pretty much guaranteed is hair loss. I don’t mind this enforced epilation, in fact not having to shave is definitely a bonus!

Doxorubicin is one of the most frequently used chemotherapy treatments for LMS. It is difficult to get good information on the level of effectiveness that it offers though figures on the internet suggest that it works in around thirty percent of patients. If the treatment works it will either shrink the tumours somewhat or it will temporarily block their further growth. The duration for which the tumour growth is blocked is called the “progression free survival time” (PFS for short). In a French run study the median value of the PFS time associated with Doxorubicin treatment of LMS was found to be six and a half months. The PFS time was measured from the point at which the chemotherapy commenced so this six and a half month period included the eighteen week treatment programme for those patients who had all six infusions.

Despite the relatively limited success rate associated with Doxorubicin I am very positive about having the treatment. Statistics apply to populations, not to individuals. My previous chemotherapy treatment used a regime that has similar success statistics to Doxorubicin, however in my case it caused the tumours to shrink and gave me around eight and a half months between the start of treatment and the tumours starting to grow again.

Away from my illness, I decided to make the most of the relatively sunny morning weather yesterday and made a trip to the Wildfowl and Wetland Trust reserve at Slimbridge. I was lucky enough to see a Bittern, a very rare heron. Unfortunately I was too slow to get a photo of it; I’ll have to try harder next time!

Friday, 20 January 2012

Decisions, decisions...

One problem with having a relatively rare form of cancer is that there is very little information available about it. When combined with the unpredictable nature of LMS this means that there is always a good deal of “decision making under uncertainty” involved in treating and managing the condition. I have really appreciated the openness of my doctors on this point; they have always been prepared to admit what they don’t know and when there isn’t enough clear evidence to dictate the best course of action. I find myself with just such a situation now.

Following my scan earlier this month my oncologist has given me three choices:

1) Have no treatment now whilst waiting until the end of March for another CT scan. Use the results of that scan to determine the next steps.
2) Start a new course of chemotherapy immediately.
3) Start a new course of chemotherapy at a time of our choosing between now and the end of March.  

There is no strong information available on which to select from these alternatives. Option (1) has the advantage of giving me another two months of feeling well. It runs the risk however that the tumours could grow significantly during this period. Option (2) is attractive because it offers the potential to shrink the tumours further before they have had chance to grow back to the size they were prior to my original chemotherapy course. The downside of option (2) is that the chemotherapy may cause me to feel quite unwell and is far from guaranteed to have any beneficial effect on the cancer.  Option (3) is a compromise and, in my view, only makes sense if we were to start the treatment sooner rather than later.

Katie and I plan to decide on our next steps over the weekend. We are currently favouring option (3) with a start date for the chemo of mid February. This will give us chance to to do one or two fun things that we've been planning before I start treatment and represents only a two or three week delay over option (1).

Away from treatment decisions we had a great time last weekend with a group of old friends getting together for dinner at our place. We had a lot of laughs; I have to admit to having a very juvenile element to my sense of humour and some of the attendees certainly know how to play to that!

Thursday, 12 January 2012


In April 2011 I was diagnosed with a rare form of cancer, Leiomyosarcoma or LMS for short. At diagnosis I had tumours in my abdomen and in my liver. The only real cure for LMS is to have all the cancerous tissue removed surgically. Unfortunately, in my case the tumours were not operable due to their number and location.

Nine months on from then I am lucky enough to still be feeling well and to have no real symptoms. I had a course of chemotherapy in the summer of 2011 that helped to shrink the tumours. From the end of August up until today I have had no more treatment, instead I've had regular CT scans to monitor for any signs that the cancer is progressing. My most recent scan was performed last week and has shown that whilst the liver tumours are stable the abdominal tumour has grown slightly. I will therefore be going back onto chemotherapy again in the next month or so.

I have created this blog to provide a source of up to date information to friends and colleagues who wish to know how I am getting along. I have decided to make the blog publicly readable as I know there are other people who share my condition and who might be interested in my experiences.

I have to warn readers up front that I may sometimes stray off topic in these posts, but you can always skip over those bits! Also I intend to be quite straightforward and open about my experiences, so I apologise in advance if anyone finds the content here to be depressing or otherwise upsetting, that is certainly not my intent.

You may be wondering about the title of this blog, well I have chosen it to remind me to always try to say something positive in each post! For this post I will just say that despite my illness and some other very sad family news, 2011 was far from all bad. My wife Katie and I had some good times too, in particular two wonderful holidays, one in Zambia and one in India. We have also been very touched by the warmth, kindness and friendship shown to us by so many people. We really appreciate all the wonderful support that so many have provided.