Missing neutrophils

I was scheduled to have my most recent round of chemotherapy on Wednesday of this week, unfortunately when I went to the hospital a blood test showed that the level of neutrophils in my blood were too low to proceed. Neutrophils are a type of white blood cell. I tried again on Friday with the same result and am now scheduled to have another go on Monday, third time lucky I hope!

The delay pretty much mirrors what happened ahead of my last round of chemotherapy where I had to wait a week for my neutrophil count to recover. As this has now happened twice I suspect that the oncologist may want to adjust some aspect of the treatment or move me to a four week cycle so that I can resume a more predictable pattern going forward. In the absence of having chemotherapy I've been feeling very well.

I've recently bought myself a trail camera. This is a camera that is designed to be left outside for long periods, it's triggered to take a short video or a still photograph when it detects movement using a PIR sensor. The camera works in daylight and is also capable of recording images at night using infra-red. Katie and I bought the camera as we suspected we might have badgers visiting our front garden from time to time. On the second or third night that we left the camera outside it recorded the following:

(If you have trouble viewing this video, you can see it on youtube at this link: http://www.youtube.com/watch?v=Nj4vrLLSX_Y&feature=g-upl).

I'm looking forward to trying the camera out in various other locations now. Katie's mum thinks she may have foxes visiting her garden so that is the next venue we'll try.

Northumberland

There hasn't been much for me to report on the medical front these last couple of weeks, a situation I'm quite happy about! Last weekend Katie and I decided to go away for a few days. We headed first to Rutland Water to see the ospreys (you can check out the nest on the web cam here: http://www.ospreys.org.uk/webcam/), then headed further north to stay a few days in Alnmouth in Northumberland.

On the Saturday we had arranged to be taken out by a local wildlife guiding company to look for red and black grouse and short eared owls on the North Pennines but the evening before our trip they advised we cancel due to the forecast rain and wind. We decided we'd spend our day visiting Newcastle instead. We enjoyed the art galleries and museums, the highlight of which was a visit to the Baltic Centre for Contemporary Art. Most "contemporary art" isn't really to my taste but it was impossible not be impressed by Janet Cardiff's "The Forty Part Motet". She has taken an arrangement of the choral piece "Spem in Alium Nunquam Habui", written in 1573 by Thomas Tallis, and recorded each of the forty voice choir on individual tracks that are then played back through forty speakers arranged in a circle around the audience. The effect is very compelling, hearing the music coming from every angle, almost like sitting in the middle of the choir during a performance but with every singer facing the listener. I couldn't help wondering what Mr. Tallis would think if he could be placed in the centre of the bare white room surrounded by the forty strange black boxes from which his music flows.

Whilst the weather was grey and wet for most of our time in Northumberland we were very lucky to enjoy a day of unbroken sunshine on Monday when we visited the Farne Islands. I spent a couple of hours trying to get a picture of a puffin in flight with a mouth full of sand eels, not an easy shot as they fly very fast when they come back into the islands. I didn't quite get the photo I wanted, but did manage one or two reasonable efforts:

My next chemotherapy cycle is due to start on Wednesday so I'll post a further update once I'm back at home after that. 

A night on the oncology ward

I went into hospital yesterday morning for a further attempt at having my second round of Trabectedin chemotherapy. A blood test showed that my white blood cell count had recovered to an acceptable level, this was quite a relief as I feared that another treatment delay would have raised concerns around my ability to continue to use this particular chemo agent. Although I arrived at the ward about 9:40am it wasn’t until after 6:00pm that the chemotherapy infusion was started. Trabectedin costs over £3,000 per treatment (that’s for just 2.9mg of the drug!) and has a shelf life of only 30 hours, it’s understandable then that the pharmacist won’t make the drug up until all the tests have been done and a doctor has given the go ahead for the treatment; inevitably this process causes some delay. Once the Trabectedin infusion is underway there is nothing further that needs to be done by myself or the medical team for the following twenty four hours. I passed the time reading (the latest Iain Banks novel ‘Stonemouth’ – those who enjoyed his other books are likely to enjoy this one too I think), creating a photo book on my laptop, listening to the radio and watching TV.

I had a large dose of steroids before starting the treatment, this was to limit any nausea but unfortunately it also seemed to give me insomnia; the oncology ward is not the easiest place to sleep in anyway. The ward is split up into side rooms each of which contain four beds. Judging from my first two stays in the ward most patients are having chemotherapy or intravenous antibiotics, in either case they are hooked up to IV pumps. These pumps are surprisingly noisy, repeatedly making rhythmic whirring, clicking, dripping and ticking noises. The pumps alarm whenever they detect that an IV feed has finished or that there is a blockage in the flow. With three pumps running in the side room I guess that I was treated to the repetitious “de..derr...de..derr” sound of their alarms around 20 times during the night, it reminded me of my early days providing 24x7 on call IT support at work! Lights out in the ward is at around 11:30pm although it never gets very dark in the room thanks to the glowing displays of the pumps and to the light that leaks in from the permanently lit ward corridor and through the uncovered windows through whose dirty exterior surfaces the sodium glow of the city diffuses. I was quite pleased to see the orange light slowly turn to pre-dawn grey soon after 4:00am this morning.

Apart from the insomnia my experience from two stays on the ward has generally been positive. The staff are friendly, kind and seem to know their stuff, the food has generally been up to a reasonable standard and the overall environment is pleasant.

Just before lights out last night there was a different kind of alarm that went off in the ward. On hearing it the nurse who was tending to another patient in the side room I was in immediately stopped what she was doing a literally ran out through the swing door and off in the direction of the high dependency area of the ward. As the door swung close I heard more running footsteps as other members of staff hurried in the same direction. I guess that one of the staff in the high dependency unit needed assistance to help a patient experiencing some form of crisis. It was a sobering reminder of the nature of this ward and of just how seriously ill many of the patients are here. It also put my experiences into a more relevant frame of reference and reminds me how fortunate I am to be able to still lead a relatively normal existence over a year since my diagnosis.

Talking of which, since my previous post Katie and I spent a beautiful sunny day at the International Birds of Prey Centre in Newent, Gloucestershire. I highly recommend it to anyone who is interested in birds or bird photography, here's one of the most colourful characters at the centre, a King Vulture:

  

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!

 

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.

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:

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.