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Cancer expert given experimental treatments for incurable brain tumour describes ‘phenomenal’ results

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Richard Scolyer is at the forefront of melanoma treatment and research, but a devastating cancer diagnosis of his own has made him the self-described “patient zero” in a new frontier of brain cancer treatment.

A medical director of Melanoma Institute Australia, Professor Scolyer was diagnosed with an incurable brain cancer in June. 

Since then, he and his colleagues have gone down a path of experimental treatment, and have given a National Press Club address, announcing they’ve “generated in 10 weeks discoveries that would normally take years”.

Professor Scolyer said his brain cancer diagnosis came suddenly, and without warning.

“No one saw it coming, least of all me. I was fit, having represented Australia at the world aquathon championships in Ibiza in early May,” he said.

In June, he travelled to Poland with his wife Katie Nicoll, and the day before had gone hiking in the mountains.

“I woke the next morning not feeling quite right,” he said.

“I had a brief phone call with my mum back in Tasmania. I don’t remember much after that. I know now I had a seizure.”

He was rushed to hospital and after a number of tests, Professor Scolyer was diagnosed with glioblastoma IDH wild-type, a cancer that’s considered incurable and usually fatal within six to nine months.

One of the first phone calls Professor Scolyer’s wife made from Poland was to his Melanoma Institute Australia co-medical director, Georgina Long.

“Nothing had prepared me for that phone call from Katie in Poland,” Professor Long said.

“When I got that call, I got a physical pain like nothing I’ve ever experienced before and it was grief for what Richard and his family were about to go through and for the thought of losing my dear friend and colleague.”

Richard Scolyer and Georgina Long addressing the National Press Club in Canberra.(AAP: Bianca De Marchi)

The melanoma expert takes on glioblastoma

Professor Long said after that phone call, she started researching glioblastoma, speaking to experts and looking up clinical trials.

“It was a barren landscape. You could count the number of immunotherapy clinical trials for glioblastoma almost on one hand,” she said.

With no clinical trials available, Professor Long said she felt obligated to “try something groundbreaking.”

Melanoma Institute Australia has been at the forefront of treatments like immunotherapy, that have drastically improved survival rates for the deadly skin cancer.

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Rather than go down the usual treatment path for glioblastoma of surgery, radiotherapy and chemotherapy, they decided to try to treat Professor Scolyer in a similar way to their melanoma patients.

“There was initial resistance from some in the oncology community,” Professor Scolyer said.

“But Katie and I spent many hours writing long letters detailing what I wanted to do and why.”

Professor Scolyer was given immunotherapy, designed to activate the immune system to attack the cancer.

They also used the specific genome of his cancer to design a vaccine to target it.

Early results ‘nothing short of phenomenal’

Twelve days after he was given the immunotherapy drugs, Professor Scolyer had surgery to have the bulk of his tumour removed.

It was then tested, to see if the drugs had an effect.

“Yes, Richard is a patient of only one, but early scientific results are nothing short of phenomenal,” Professor Long said.

They found there was a 10-fold increase in the immune cells in the tumour, that they were activated against the cancer and they were bound to the drug.

“Proving something that we’d already shown in melanoma, that there is no blood brain barrier and historically conceptualised, preventing the drugs from reaching the tumour,” Professor Long said.

“We could not have hoped for better results.”

But the pair said it was too early to say whether those scientific results mean a better prognosis for Professor Scolyer.

The experimental treatment a unique situation

Professor Scolyer said at this stage the experimental treatment he has undergone won’t be available to other patients.

“I can only do this because I’m a cancer researcher and clinician and so inherently understand the risks,” he said.

“This treatment may extend or shorten my life.”

The co-medical directors said pharmaceutical companies have been reluctant to invest in glioblastoma research, but their early results mean some are starting to pay attention.

They are hopeful it will lead to clinical trials.

They have called for a change in approach to cancer research and treatment, such as looking beyond the confines of one cancer, designing better clinical trials and embedding research in clinical care.

“We know we’re not curing as many cancers as we could,” Professor Scolyer said.

“Today we call on the cancer research field to collectively re-think its approach to tackling cancer. Think big and be courageous.”

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