Tom's story

Tom was diagnosed with secondary cancer resulting from melanoma in 2013. Shortly after, he was asked to join a clinical drug trial. Watch Tom's story.

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[Tom]

I'm a retired radiographer. I worked at the Royal Prince Alfred Hospital for most of my working life. I was diagnosed with a melanoma on my right shoulder in August 2000. I had surgery to remove that. Each year I’d go to the melanoma clinic for check-ups with a chest X-ray, which were all normal until cyst X-ray number 13 in 2013 showed a massive lesion in my right side of my chest. I was then sent for further treatment, C.T. scans and such, which showed secondary cancers in my liver and in my right lung.

I was then referred to Dr. Catriona McNeil at the Lifehouse Centre and she offered me the chance to go in a clinical trial of this new drug coming on the scene at the time. I consider that if the drug worked or didn't work, as with all forms of trials, that it had to be tested on somebody and I had no qualms about being tested. I consider that was my little contribution to medical research to be the test model and normally if you are diagnosed with melanoma, secondaries you've got nothing to lose.

I was given an infusion through the hand every third Friday. Initially, I'd get a bit tired and my older brother would pick me up each time and eventually by the year 2015, I picked up remarkably and he didn't have to pick me up.

I give credit to those who were looking after me from those who developed the drug right down to those who do the infusion into me. The nursing staff, they were all very good at their job, all very friendly and I'd take a few passionfruit in occasionally as a bribe and the nurse research assistants, they’d all been very good. When you work with competent people, it makes a big difference that people who do know what they're talking about know how to express themselves and listen to you very knowledgeable in their jobs.

The treatment is fairly straightforward, no pain involved, and there's no reaction to the drug going in. You just sit in a comfortable chair and make yourself comfortable with a crossword on one arm. After about 90 minutes, the buzzer goes off. The drugs all run through. And they say, right, take it out. You go home now.

In 2015 I started to improve remarkably. I could get up the hill here without having to drive up and leave my car at the top of the hill. I'm not cured, I'm stable and under control. And the tumours in my liver and lung have been decreasing in size ever since the treatments started and there don't appear to be any more fresh ones. So, thanks to the team that's looking after me, they've kept me alive for this period. And I believe the eventual results of the clinical trial have been more than satisfactory they can now offer people hope. The oncologists now have a tool to use to offer people a good quality of life.

I can still do most of the things that I've be doing for years. I don't do all of lawns in one day anymore. I might do one third one day and one third another day. I turn 77 in May so I’m quite satisfied to have a few more birthdays, I never, ever thought that I would reach.

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Tom McNamara thinks he was about 8 when he was sunburned. ‘In my younger days my mother would take us to Bronte Beach to see the family. It’s taken all these years for my melanoma to show up.’

Now 75, the former radiographer at Royal Prince Alfred Hospital in Sydney was told last year he had secondary cancer in his lung, with another tumour on his liver. In Australia, 30 people a day are diagnosed with melanoma, and 1,200 die each year. ‘Basically I was devastated. Having been a radiographer, I knew what to expect. If you have secondary cancers in your liver, I would think you would normally have about 4 months to live.’

Mr McNamara, however, was one of 19 patients with advanced melanoma at Chris O’Brien Lifehouse and Royal Prince Alfred Hospital to participate in the global trial of a new drug, pembrolizumab (Keytruda). Pembrolizumab works by targeting a protein on the surface of immune cells that stops them from attacking the melanoma cells, preventing the PD-1 protein from stopping the immune response against the melanoma. For some, the drug prolongs survival and is also less toxic than alternatives, producing fewer side effects.

The global study compared pembrolizumab with another immunotherapy drug, ipilimumab and found that pembrolizumab ‘prolonged progression-free survival and overall survival and had a favourable safety profile compared with ipilimumab in patients with advanced melanoma’. Dr Catriona McNeil, who treats Mr McNamara at Chris O’Brien Lifehouse, a cancer hospital serving patients from Royal Prince Alfred Hospital and around Australia, says: ‘I would regard these outcomes as some of the most game-changing that I’ve seen in my career. It’s tremendously exciting for all of us working in cancer medicine.’

More than a year later, Tom is not only still alive, his tumours are shrinking. A 10 cm tumour on his lung has shrunk to around 2 cms. ‘I have worked in a hospital all my life. I know the value of having someone for testing. I was prepared to be in the control group, and I knew that it could either save my life or I would die. This wasn’t about grasping at straws to stay alive – by doing this, I was able to do something much bigger for other people as well.’

Tom is back looking after his flowers. ‘I have a big garden with roses and plenty of chrysanthemums.’ Some of those roses go to Dr McNeil, every time he visits her for his ongoing treatment.

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