Wednesday, 30 May 2012

Unexpected delay

I was due to have my second Trabectedin treatment today, however this has been delayed because I have too low a level of neutrophils, which are a type of white blood cell. The hospital is trying to reschedule my treatment for next week but this depends on the availability of a bed. I'm waiting for a call to confirm when we can try again.

Delays like this are non-optimal in terms of treating the cancer but are not uncommon with chemotherapy. I hope that my blood count recovers in time for the next attempt at treatment. One of the practical problems with the change to my treatment schedule is that the dates on which my immune system will be low have all changed too, this means that we may need to change some of our social plans which makes us very unreliable friends!

As ever there is a silver lining to be found, in this case the delay means that Katie and I have a free day tomorrow. Hopefully the weather will remain good and we'll be able to get out and about somewhere, no doubt I'll be taking my camera with me!


Thursday, 24 May 2012

Update & Pazopanib

I saw my oncologist today, he's satisfied with the way the first cycle of the new chemotherapy has gone and, subject to nothing odd showing up in my blood test results, I'll go ahead with the second cycle next week.

Since my last blog entry the side effects from the Trabectedin have been relatively minor. For the first week after having the treatment I had some fatigue, particularly in the afternoons, some fluid retention (but that only lasted two or three days) and some disruption to my digestive system which is still ongoing (I will spare you the details!). I am hopeful that the next cycle will not prove to be a more difficult experience.

There was an interesting development recently regarding the treatment of Leiomyosarcoma. First, the US Food & Drug Administration approved the use of a drug called Pazopanib for the treatment of advanced soft tissue sarcoma and then the results of the phase III clinical trial on which the FDA decision was based were published in the Lancet. In the trial the use of Pazopanib gave "A statistically significant improvement in progression-free survival (PFS) in patients receiving pazopanib compared to those receiving placebo".

Pazopanib is an anti-angiogensis drug, these agents work by stopping tumours from developing the blood supplies they need to survive and grow. There is quite a lot of research into anti-angiogensis agents and Pazopanib is one of several that are being tested for efficacy against various cancers.

The development of a new treatment for soft tissue sarcoma is something that happens very rarely so it's really positive to see the trial results and the decision of the FDA. Sadly Pazopanib is not a cure for the disease and the results of the trial still leave unanswered some key questions about the duration and extent of the benefits of this drug though it is clear that in most cases these last for only a few months. It will be interesting to see if Pazopanib is approved for use in the NHS.

Thursday, 10 May 2012

Update on Trabectedin chemotherapy

I had the first instalment of my latest chemotherapy, Trabectedin, this week. All went well and it was a straightforward experience.

In preparation for the chemo I had a PICC line fitted on Tuesday afternoon. This is thin plastic tube that goes into a vein at the top of my arm and runs into the large vein that feeds blood back to my heart. The PICC line allows the chemo drug to be delivered with less chance of damage to my veins and also means that I don't have to have any needles now in order to get blood tests done or to receive the chemo. The PICC line will stay in whilst I continue to be treated with Trabectedin.

I went into hospital yesterday morning to have the chemo. The drug is given through a 24 hour infusion and so requires a one night stay in hospital. The PICC line meant that the experience was pretty non-intrusive and I was back at home early this evening. So far I haven't had too many side effects, I hardly slept last night in hospital, this was probably down to the large dose of steroids I was given before I had the chemo, hopefully I should sleep better tonight. I also had some slight nausea and some stomach pain (both known side effects of Trabectedin) but these have eased off now. I will have to see how things go over the next few days but I'm hopeful the side effects won't be too bad.

I will have further treatments once every three weeks with a CT scan after the third treatment to see if the drug is having a positive effect on the cancer.

Now we know what my chemo schedule is likely to be for the next few weeks Katie and I are planning a trip to Northumberland so that we can visit the Farne Islands to see the Puffins. Here's a shot I got of one of these characterful little birds last year on Skomer in Wales:

Thursday, 3 May 2012

It's all Greek to me

Socrates reputedly said that “The only real wisdom is knowing you know nothing”. As I’ve grown older, my experiences have increasingly led me to believe that he was right. I can think of many times in my life when I’ve held strong beliefs that have later been shown to be quite mistaken. For example, to pick just one, I used to think that the UK should adopt the Euro – in retrospect it seems that would have been a bad move!

Socrates’ quote seems particularly apt in the context of understanding cancer. I’ve spent a lot of time reading scientific articles in order to try and understand the way in which the efficacy of specific cancer treatments may be modified by the genetic mutation that I carry in my TP53 gene (see my post “Genetics – a double edged sword” from March). I read one article and it seems to say one thing, then I read another and it seems to say the opposite! I can spend a lot of time reading without acquiring any wisdom. What I’ve picked up from my research is that whilst I might be able to identify interesting questions related to my treatment it is very difficult for a non medically qualified person to answer these. I'll be passing my questions to my oncologist in order to get an expert view.  

Today’s consultation confirmed that my next step is to try another type of chemotherapy, this time using a drug called Trabectedin (also known as Yondelis). I’m hopefully going to start this new treatment on Wednesday next week. This is dependent upon a bed being available in the oncology ward as this chemotherapy is given over a twenty four hour in-patient stay. I have to call the ward on Wednesday morning to see if a bed is available, if not they’ll try and get me in on Thursday or Friday. On Tuesday I will have a ‘PICC’ line fitted in my arm, this will be used to deliver the drug into my body.

Unlike my previous treatments I will continue having this chemotherapy once every three weeks until the chemotherapy either stops working or until I can no longer tolerate the side effects. The specialist sarcoma nurse told me that they have one patient who has had sixteen cycles of Trabectedin though I think the average number of cycles is closer to five. Hopefully I’ll be on this drug for a long time, the only down side to that would be that I am unable to drink any alcohol at all whilst receiving Trabectedin!

At the meeting with the oncologist we also reviewed the last scan that I had in more detail. From this it was clear that the suspect tumours that are showing in my lungs are small at present which was something positive anyway.

Away from my illness Katie and I have had a busy and enjoyable week or so. We’ve been seeing friends, last week I went on a photographic tour of Slimbridge and earlier this week we went down to London for a couple of days; we had a very nice time in the capital enjoying some of the sights and seeing “Billy Elliot” at the Victoria Palace theatre.