Chapter 18: Clinical Trial

“Doctors and patients need as much data as possible to make an informed decision about what treatment is best.”
Ben Goldacre

The last thing on the agenda for my week off work to put my affairs in order, is my initial consultation with my newly appointed oncologist at Southampton General Hospital. Upon arrival at the oncology centre I’m immediately shepherded to the weighing and measuring section. I remove my weighty tweed jacket as I mount the scales in an optimistic attempt to get my BMI down into the mere overweight section, (as opposed to the obese section). The conveniently positioned coat hook however has rather inconveniently snapped off. As I stand on the scales, jacket in hand, pondering how my instantaneous weight loss plan has been irksomely foiled by faulty ironmongery, the nurse kindly relieves me of my jacket. By also cunningly leaving my shoes on during the measuring process, and gaining an extra inch in height, I successfully manage to sneak my BMI just under thirty, and thus successfully into the slightly more forgiving, overweight zone.

After the weighing and measuring I’m summoned into the end room to have a blood sample taken and my blood pressure checked. After all the required checks and tests have been completed, I take a seat next to Tori in the waiting room and await my consultation with my new oncologist. We now have a little bit of a wait. Marvellous as the NHS are I have noticed that they do have a tendency to add to the tension somewhat, rather like some TV talent show results reveal, by just keeping you waiting a little longer than comfortable before telling you your fate. Dr Wheater’s office door opens slightly. Could this be it? A slim arm extends to a post tray mounted just outside his door. He grabs a manila file of patient notes, pulls them inside his office and closes the door again. He must be reading my patient notes now ready for my consultation. The tension mounts further. After a few more minutes Dr. Wheater’s door opens again and a friendly head appears. The head smiles and utters the words, “Mr. Jago?” in very cheery tones. That’s me, game on.

It turns out that the friendly head is owned by none other than Dr. Wheater himself, who now introduces himself to Tori and me, we shake hands and he offers us both a seat in his office. He brings up an image of my last CT scan on his computer screen and patiently talks me through it as he pans and zooms my internal organs like a Google Street View map. There’s quite clearly a long thin dark area on the side of my right lung and a similar, though slightly more squat tumour against the side of my liver. There are also a few other shadowy specs dotted across my tummy. It’s nothing worse than I was expecting having been pre-warned by Mr El-Saghir at Salisbury General Hospital. Dr. Wheater acts like he’s probably seen a lot worse and I’m feeling relatively relaxed.

As Mr. El-Saghir successfully predicted, Dr Wheater’s recommendation is a course of Tyrosine-Kinase Inhibitors (TKIs), the particular TKI that Dr. Wheater favours is called Pazopanib. Dr. Wheater carefully explains that the pazopanib is not a cure and I cannot expect it to completely rid me of the caner, there is however a very good chance that it will shrink or hold the cancer back for a period of time thus prolonging my life. It’s made very clear to me that we are now in the territory of prolonging my life for as long as possible rather than curing me. The average time the pazopanib has proved to be effective is about eleven months, but that average could be a little misleading. For some patients it doesn’t work at all, and for others it can be much longer, I get the impression that there’s not a tight gathering of dots around the eleven-month line on the pazopanib efficacy graph. Still and extra eleven months is most welcome so pazopanib it is then.

I’m already convinced that the NHS are giving me the best possible treatment available, but I work for an American company and hence also have a private health care policy with my employers so, out of curiosity, I ask what treatment I would get if I opted to be treated privately. It turns out that if I was treated privately I’d also be prescribed pazopanib, the only difference is that I’d be guaranteed to see Dr. Wheater on each consultation. I don’t wish to be a drain on the NHS, but I do want to support it, after all it is an utterly incredible organisation. There therefore seems little point in going through the rigmarole of changing to a private patient, so I decide not to invoke my private health insurance policy. I’m thankful that I live in a country with a free National Health Service and it seems utterly bizarre to me that any developed country would not have a universal free health care system. What sort of person would rather his fellow citizens suffered and died in order to keep their personal tax bills as low as possible? I find it even more perplexing that the main country who take this approach to their populations health also purport to have strong Christian values. Bizarre.

As for as how long I will need to take the pazopanib is concerned, Dr. Wheater informs me that patients normally stay on the pazopanib for as long as it is effective. However, there is an alternative. Dr. Wheater tells me about a new clinical trial he is currently offering patients with my condition to sign up for. Basically on the clinical trial I will take the exact same drug for four cycles, each of six weeks, with a consultation every six weeks and a CT scan every twelve weeks to check on my progress. However, after twenty-four weeks of treatment, if all is well, I will then take a break from the chemotherapy. The theory they want to prove is that after a period of treatment the cancer may stabilise and the patient may do OK without the drug for a number of months or even longer. Once there is any sign of the cancer growing again the patient will then go back on to the pazopanib. As the pazopanib is only likely to be effective for a certain period of time, the logic is that by taking treatment breaks it is possible to extend the period of time that the pazopanib can offer. If I’m interested in going on the trial, I will be randomly placed into one of two groups. The first group will receive the pazopanib continuously and the second group will receive a treatment break after twenty-four weeks and then return to the drug when needed. The study will then compare the survival times of both groups to see if it is better to take the drug continuously or to take breaks.

It seems like a bit of a no-brainer to me, if I’m in the continuous group then that’s no difference to the treatment I would receive anyway, if I end up in the break group, there’s a chance the amount of time the drug will work may be extended. I will also get a break from a lot of possible side-effects of the chemotherapy. Even if the break doesn’t work I will at least be generating some useful data for future patients. I like data, good data helps make better decisions. I tell Dr. Wheater that I would like to take part in the trial and the trials nurse issues me with a load of documentation to sign regarding the trial. We take the paperwork away to the Costa Coffee shop at the hospital, read through, and sign. When I return to the oncology centre after our coffee break, I’m informed that I have been randomly assigned to the group of patients who will receive the treatment break. I am a little sceptical about the process for assigning me to the group, I do wonder if they already have a lot of data from patients who had continually taken the drug and therefore require more patients in the treatment break group. There is however, no point in worrying about it as the treatment break group is the option I would have chosen had it been on offer. A further appointment is made for next Monday morning to receive the drugs and start the treatment course. They just need to check my blood test results first and ensure I am eligible for the trial before they can issue me with the drugs.

After my busy week off it’s time to go back to work again. Sorting out my finances and my will in actual fact didn’t take that long, and my initial oncology appointment wasn’t really that scary. However, even if I didn’t have such a busy week I certainly needed the time off to start to mentally come to terms with my prognosis. I’m feeling sort of OK now, but it would be naive to think that I have fully come to terms with my condition just a week after being told I have terminal cancer. Nonetheless, I’m not in any vast physical discomfort at the moment, and I do have a mortgage to pay, so it’s back to the office with me on Monday morning.

Back at work and on the surface all appears to have returned to normal, but it is all far from normal in my head still. I’m finding it hard to deal with future dates at work. I’m on a long-term programme of work and I have divided my teams work schedule up into quarterly integration cycles over the next three years. It becomes hard to engage when talking about high level plans for integration cycles three years down the line when I know full well that it is highly unlikely that I will be around to implement them. What am I supposed to do, say I don’t care what happens in three years time as it will no longer be my concern or continue with my job as normal as if I’m just fine. Of course I choose the latter, and after all I do care really about how the new system will work in the future, but it is hard not to feel a little resentment and even jealousy when thinking about near future dates beyond my life expectancy.

My employers have also been incredibly understanding and supportive. I’ve heard tales of people who have been sacked because of their cancer diagnosis or employers who have been inflexible with the needs of their employees to attend hospital appointments and treatment sessions. Fortunately, these are not problems I have encountered. I’m given all the support I need and am told that it won’t be a problem for me to take some time out for the inevitable stream of hospital visits. In fact, I need to skip off work early on my first day back as I have my follow-up appointment with Dr. Wheater, at Southampton General Hospital to collect my new chemotherapy drugs.


Back in the oncology centre at Southampton General Hospital and I settle down again into one of the chairs in the waiting room opposite a young lad and his mother. We get chatting and I discover that he has just completed his chemotherapy course for testicular cancer and he is awaiting the consultation that will hopefully give him the all-clear. His mum is hopeful as he hasn’t lost too much weight since his last visit. He looks incredibly thin to me and I foolishly remark that I was rather looking forward to the weight loss effects of the chemotherapy, she politely laughs before courteously reminding me of the seriousness of weight-loss on chemotherapy. We chat further and I’m in awe of his courageousness and the humility in which he seems to have handled his ordeal. My name, is however called before his, so I wish him all the best for his consultation and head off for mine. My fellow oncology patients really are a jolly nice bunch of people, especially considering most of them are skinheads.



7 comments:

  1. Bonjour Crispian.
    Intrigued by PZ Myers article about your site, I took a look. Read all the chapters so far. Enjoying every word.
    Luc Tanguay - Boucherville (Montréal suburb), Québec

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    1. Thanks Luc, I'll try and keep writing.

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  2. Crispian, clinical trial sites usually have a blinded list to tell them which arm to assign the new patients. In your case, once you gave consent they went to the list, and you were assigned to the experimental arm. Dr Raucous I.

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  3. I am really enjoying this blog (I apologize that it's at the expense of your life ending).. I have laughed out loud, probably much too loud, several times at work. Bringing humor to death is something we all could use more of. It is rare to read such a realistic reaction and approach to this kind of diagnosis without all the afterlife/his plan nonsense. It is almost preparing me as an atheist on how to handle myself once I am inevitable diagnosed with something similar. Everyone I know who has gone through it took solace in their beliefs. Thank you for this and hang in there so we can get more, will ya? -Elise (Chicago, IL, USA)

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  4. And just so this one point is clear: you may withdraw from a clinical trial any time you'd like to for any reason or no reason at all. You should never feel compelled to continue, especially if you have any misgivings about your treatment regimen. Your autonomy is of paramount importance.

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    1. Yes, it was made very clear to me that I could pull out at any time.

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