Chemo, clinical trials and a couple of ill-advised cocktails

Tuesday 29 November

Well, this second-line chemotherapy treatment is proving trickier than anyone expected. Although my blood levels – platelets, critical to blood clotting – and white cells, the ones that fight infection, do appear to return to normal between doses, every new chemo infusion really batters them. So today, I’m back at the Royal Marsden hospital for blood tests before what I hope will be more treatment on Thursday. And whoopee! Blood levels are all good. Mind you, after all the help they’ve been given – a platelet infusion and another string of self-injectable “growth factor” syringes to stimulate white blood-cell production in the bone marrow – they should be!

This being the third dose in the four-week cycle, I should be in line for my second visit to “club class” to get the extra drug ramucirumab the NHS won’t fund and which I have to pay privately for – you remember the £12,000-a-month job? But no. Consultant Dr Starling is still trying to get to the bottom of whether it’s the paclitaxel (that’s the standard chemotherapy drug the NHS does pay for) that’s really attacking my internal systems, or what. So she recommends – given that we’re weeks away from the effects of the previous radiotherapy, there’s been no sign of the dreaded kidney stones and I’m not dehydrated – going for paclitaxel only to get the clearest view possible of its effects.

She also suggests a slightly lower dose than normal so as to reduce the risk of more serious side effects. What’s more, as this is the third dose in the cycle – it should have taken three weeks so far but it’s been more like six with all the extra recovery time added – next week should be a week off treatment, which should be a relief but in the circumstances doesn’t really feel like that. I’m left with a nagging worry – which I’m sure the medical team shares – about what we do next if I really can’t tolerate paclitaxel…

Saturday 3 December

I got a call a couple of weeks back from the chairman of my local rugby club – Harpenden – asking me whether I’d like to join him for the club’s Christmas lunch, which happily coincided with the England v Australia game. I said I had a very old friend visiting from Canada – but no problem, he was invited too. Then it was suggested that any money raised on the traditional raffle could go to any charity I’d care to nominate. I suggested Macmillan Cancer Support and the Maggie’s drop-in centres and offered to say a few words of thanks to the assembled at some point.

Come the day, to be honest I was feeling OK but not great. A bit fatigued and feeling the cold – something I almost never used to do – not even running around those pitches refereeing rugby matches in the sleet and snow! But that was then. Now, many kilos lighter – which leads almost everyone I meet to tell me how well I’m looking! – I feel the cold intensely and, for reasons I hope are obvious, have an almost fatal attraction to padded chairs. Anyhow I arrive at the club – my Canadian friend is en route from Heathrow – to discover its not just a few words of thanks they want but that I’m the after-lunch guest speaker! And all I’ll say is that if you try Googling “cancer” and “jokes” you don’t get a great selection!

I did find a couple of cancer quips which, somewhat unexpectedly as I’d really no idea how a more light-hearted take on cancer would go down, produced huge waves of laughter, and although it was a rugby club Christmas lunch people seemed really keen to share the cancer story I told them – jokes and all. So much so that afterwards I was approached by lots of people talking about their experience of cancer or that of their families but also saying how much they’d enjoyed a good collective laugh about the subject – to go with the concern and the tears. What’s more they gave plenty, which will be passed on to the charities in due course.

Thursday 8 December

Back at hospital for blood tests and a chat – it’s the middle of my “week off”, remember. Well, it really couldn’t be much better. Blood pressure up and stable, no sign of wretched kidney stones and blood tests all good – actually excellent. So full speed ahead for treatment next week? Well, maybe not. Dr Dan the senior registrar produced a 32-page document about a clinical trial that I might be eligible for. It involves two immunotherapy drugs, nivolumab – of which more later – and another drug called “anti-LAG-3”. In a nutshell, cancers appear capable of escaping attack by your body’s own immune system by persuading (chemically, that is) key parts of the system to switch off. These drugs are designed to switch key elements of the system back on and therefore enable the immune system to attack the cancer.

And it would appear I am ideally suited to this trial, which is looking to recruit “gastric” participants. But here’s the thing. As Dr Dan readily acknowledges, the good blood results after the last lot of chemo might indicate that we’ve turned the corner and that the chemo isn’t perhaps as toxic as feared. Trouble is we’ll need at least one more cycle to know that for sure and it’s just as likely that the chemo remains fairly toxic and that in four weeks’ time the trial will have stopped recruiting and we’ll be left with reduced doses of chemo which might hold the cancer in check if we’re lucky. In other words, in chemo terms we might be left hobbling when we should be sprinting.

The trial, by contrast, sounds really interesting and even, dare I say it, exciting. So, decisions, decisions. And when you think about it – pretty big ones!

Saturday 10 December

Decided to go away to Devon and Dorset for the weekend to relax and ponder. Succumbed last night to glorious log fires and good food and, critically, two cocktails. Big mistake! As my liver has plenty of active cancer in it, it can produce an ache under my right ribs if provoked. And while a pint or a couple of glasses of wine seems to be OK – a negroni and an old-fashioned weren’t.

By late morning, news comes through that the Sunday Times writer AA Gill has died. I knew him to say hello to but not well, but had felt a sort of kindred spirit – as we both had to come to terms with you know what. We’d also both had to deal with situations where the NHS wouldn’t fund drugs that might do us good – in his case the immunotherapy drug nivolumab. And although I knew his position was in many ways more difficult that mine, with more advanced spread of cancer to more difficult parts of the body, news of his passing came as a real shock. Actually it reduced me to tears.

Tuesday 13 December

Back at the Marsden: decision day on clinical trial. Blood tests all good. With one exception. All the usual suspects are fine but my albumin level is slightly low. Dr Starling says this could be a sign of poor nutrition or infection or a slightly misbehaving liver. But the critical point is that to get on to the nivolumab/anti-LAG-3 trial my albumin level had to be 28, whereas on Tuesday – the last time I could realistically be consented for the trial – my albumin was 26. So no trial. All more than slightly frustrating and, if I’m honest, disappointing.

But the rollercoaster moves on and another clinical trial is produced also involving nivolumab – the drug that might have helped AA Gill had he got it soon enough. What’s more, the rules of this trial mean I can have another round of chemo in the meantime. So suddenly we might be in a win/win situation? More chemo to keep control and check toxicity and a very promising new trial in the wings?

Decisions, decisions and all in a week! Oh, and happy Christmas – it’s one I shall treasure.

Chemo, clinical trials and a couple of ill-advised cocktails