Thursday, March 17, 2016

A trial and a tribulation

Chapter 18 – visits 6 and 7 to London – a trial starts...

On Monday 7th March, I went to the Cambridge hospital to see my big chief oncologist. I told him that it looked like I was being accepted into the Marsden trial. I mentioned that my left arm had been giving me bouts of pain, perhaps because of the oxaliplatin treatment I had 6 months ago, and asked if I could be prescribed Amitriptyline, which my sister recommended. This was agreed. Then I ran off to do some teaching at the University - a mock select committee hearing, where the students played the role of a government department and various lobbyists, and I played the role of chair of the select committee. That was fun.

On Tuesday 8th March, Ramesh and I picked up my Amitriptyline prescription then took the train to London. At the Marsden I provided a urine sample and signed some final consent forms with one of the doctors in charge of the trial.

On Wednesday 9th March I gave my final lecture on Information Theory in Cambridge.

Then on Thursday 10th March we went down to London again for a 3pm appointment to start the Ramucirumab and Pembrolizumab treatment. There was quite a long wait, because the hospital was short staffed. The treatment got going at about 5pm.

This photo shows the tiny bag of Pembrolizumab – I think this much drug costs about 10,000 pounds.

The only noticeable side-effect of the treatment was that my blood pressure went up a bit.

After being observed for an hour, we were free to return to Cambridge.

Chapter 19 – other ailments

I've had a phlegmy cough for such a long time now, I have lost track of when it started. I started taking antibiotics for the cough about Saturday 5th March. I had a few scintillating scotomas as well in February and early March. Not painful. And I've had a perpetual roaming pain that has wandered around my body: what was at first for a few weeks a spasm in my upper back migrated down and became a severe right rib pain for a week; then it seemed to travel into my left hip, which became superficially tender so that I limped for a few days.

Then we had a delightful three-day collection of meetings: a one-day research-group reunion, and a two-day symposium on "Information Theory, Inference, and Energy" (photo below by
Photo by
On Tuesday 15th, during the symposium, my hip pain again switched sides and took up residence in my right calf. It felt a lot like a cramp.

On Wednesday morning, given that walking felt quite difficult, I decided that I should ask the medics to check out my calf pain in case it was a deep vein thrombosis (i.e., a clot in a vein in my leg). I phoned the hospital at 8am, and they asked me to see my GP and, if appropriate, get referred back to the hospital. I called the Marsden to let them know what was going on. The GP saw me at 11.20, and reckoned there was a modest chance that I did have a DVT, so he gave me a letter and I cycled to A+E at the hospital. (Walking was difficult but cycling slowly was fine.) We met the Addenbrookes Thrombosis team, who were absolutely wonderful, and at about 1.30pm I was ultrasounded and it turned out that I did have a small DVT.

So, all of a sudden, I'm a different sort of patient, and new medicine is required.

The lovely nurse took my blood samples, I had a talk to the consultant, and then we waited for the results to come back.

The recommended treatment for deep vein thrombosis for a cancer patient is Dalteparin (aka Fragmin, a heparin), which is injected daily.

The nurse showed us how to do the injection. It really hurt!

Then we went home. As I went to bed, we received a phonecall from an out of hours doctor at the hospital who had seen my latest blood results: my "d-dimer" levels were very high, which indicated a thrombosis was likely; he was reassured that I had already been given treatment. How interesting that they can measure these sorts of things from a bit of blood!

A big thank you to our lovely friends who looked after our children repeatedly this day and over the last few weeks!

Chapter 20 – the trial ends?

Today, Thursday 17th March, I had been due to travel down to London for my second Ramucirumab infusion. But the Marsden said that under the experimental protocol, my thrombosis means I can't have Ramucirumab any more. So perhaps my experimental treatment is over. We wait to hear.

I'm staying at home, unable to walk today, but hoping that within a couple of days I'll be on my feet again. Our plan is to go to Wales for a holiday where we hope to enjoy views like this:

1 comment:

DavidG said...

David, I saw your Info systems book on my bookcase today and thought 'What's he doing now?' A Google search later and I've learnt your brave and challenging, affirming story. We so rarely hear about, or think about, our own mortality and contemplate death, let alone talk to others about our end. You are a little under a month older than me; the same age really. Too young. Although I have never met you I want to thank you for your lovely, inspiring book (I haven't read the other) and your commitment to energy and climate change. Even if it's only in a small way you are an inspiration for me. Thank you. David