Patient Stories

When Allen Schnitzerling was diagnosed with Merkel cell carcinoma – a rare but highly aggressive skin cancer – his prognosis was dire. But after putting his faith in his doctors and their “special soup”, as he affectionally calls it, Allen is now planning adventurous holidays with his wife.

Growing up on a cane farm outside of Cairns, Allen dreamt of following in his father’s footsteps and working the land in the foothills of the stunning Wooroonooran National Park’s lush mountains.

But at the insistence of his parents, Allen pursued another of his passions, carpentry. Allen started his own business and then, at the age of 23, left his small hometown for Gladstone, which was experiencing an aluminium boom.

And so began an adventurous life that took Allen across the country – and around the world – and introduced him to his wife, Margaret.

But a life of constructing houses under the hot Australian sun left Allen peppered with sunspots, which he monitored and treated as required.

It was in 2020, at the age of 78, that Allen noticed a small, firm, purplish-red mark on his leg that he dismissed as being related to a recent fall.

“I was seeing my GP to have another skin cancer removed when they noticed the mark and suspected it might be more malign than just a reminder of my accident.”

A biopsy soon confirmed that Allen was one of the 300 Australians to be diagnosed each year with a highly aggressive Merkel cell carcinoma. Shortly after, he was rushed into emergency surgery to remove the cancer and lymph nodes in his groin. Allen then underwent a course of radiotherapy.

“I was quite hopeful after that initial treatment – you have to be, despite the scary statistics – but about a year later I received the bad news that the cancer had returned.”

Allen was promptly offered a spot in the GoTHAM trial, which is investigating the effectiveness of combining radiotherapy with immunotherapy for treating metastatic Merkel cell carcinoma.  

“I was so grateful to be offered a place on the GoTHAM trial. I’ve always put my trust in professionals, particularly when it comes to anything medical, so I looked them dead in the eye and said, ‘I’m your patient, you go for it’ – and I’m so glad I did.”

“At my first trial appointment, I told the medical staff that I hope they can keep me alive a bit longer, because I’ve got a few more things I want to do and more adventures to go on with my beautiful wife.”

Now, four months since his first treatment session, Allen received some positive news – a PET scan revealed he was cancer free.

“Hearing that was probably the most emotional I’d gotten throughout this whole thing. I was so overwhelmed and overjoyed that I have a bit more time left. And while they can’t say for certain that the cancer is totally gone, I’m going on some exciting – and long overdue – holidays with Margaret to make the most of life.”

With the blessing of the GoTHAM team (and some shuffling of appointments) Allen and Margaret recently embarked on a cruise around Papua New Guinea – somewhere they’ve wanted to visit since they were young.

And with a European river cruise on the horizon, Allen is excited for a future made possible thanks to innovative treatments developed through clinical trials.

Go to the Melanoma and Skin Cancer Trials website to learn more about the GoTHAM trial.

John Mason spent much of his life outside in the sun, including 13 years of constant fieldwork in Papua New Guinea and then a decade living on a cruising yacht in sunny Queensland and the Northern Territory. When his doctor found a malignant tumour below his left ear, John felt that removal and recovery would be a routine process.

A month after having the lump surgically removed, John, aged 72, made the long journey from his home in regional Bundaberg to Brisbane’s Princess Alexandra Hospital, where he was scheduled to begin chemotherapy.

But when a doctor John had never seen before sombrely ushered him into a small consultation room, he realised something was wrong.  

“The doctor told me that I had a Merkel cell carcinoma, a rare and aggressive form of skin cancer. I had never heard of it before, so – still reeling from the shock of the diagnosis – I asked what the survival rate was. He looked me square in the eyes and said earnestly “Frankly, the numbers aren’t good, John.’’

The doctor who saw John that morning was Dr Wen Xu, head of the Australasian Merkel Cell Carcinoma Interest Group (AMIGOs) and Study Chair of a new clinical trial investigating a promising new treatment involving the immunotherapy drug, Avelumab, in earlier stages of Merkel cell carcinoma.

“When Dr Xu told me about this exciting new clinical trial that he was leading, I could hardly believe it. Not only would I get free access to an otherwise prohibitively expensive treatment, but I’d get regular monitoring and support. In the space of minutes, I’d gone from the crushing low of my diagnosis to realising how lucky I was to meet Dr Xu and receive the treatment that I’m getting.”

After a few formalities were completed, John was soon enrolled in the I-MAT trial and, after a course of radiotherapy, commenced immunotherapy.

John was able to receive the treatment in Bundaberg, as the I-MAT trial, which is coordinated by Melanoma and Skin Cancer Trials, has several regional sites to ensure more Australians can take part in the trial.

 “I was so grateful that I didn’t need to travel to Brisbane for immunotherapy, as that would have been a huge complication. When you are going through something as stressful as a cancer diagnosis, you just want a bit of normality: to stay in your own home, spend time with your loved ones, that sort of thing. Being able to access the treatment locally has been hugely positive for me.”

John tolerated the trial treatment well, experiencing very few side-effects. Now, having finished the treatment, he is focused on completing the PhD he commenced before his diagnosis. John is researching sustainability issues amongst volunteer firefighters.

“I’ve long been intrigued by what motivates these local heroes to put their lives on the line, and through my treatment I’ve had the opportunity to meet some other inspirational heroes. From Dr Xu through to everyone at Genesis Care and Cancer Care in Bundaberg, and knowing I am in the best possible hands at every step has made the journey easier.

“Most importantly, I’d encourage everyone to be more careful in the sun. I certainly wasn’t careful enough and it’s caught up with me. But if you do get a bad diagnosis or a scary prognosis, it doesn’t have to be the end – and thanks to modern medicine and research, it can actually be a new beginning. Hold fast, be brave, and have faith in the skills of the incredible health professionals assisting you.”