This
appeared last week and provided our good news for the week!
Australian books
The scientist who tested his revolutionary medicine on his own brain
cancer: ‘It seemed worth it to give it a crack’
Richard
Scolyer was one of the world’s leading melanoma researchers when he was struck with a brain tumour.
Facing likely death, his team made him a guinea pig for his own medicine
Susan Chenery
Sun 3 Nov
2024 06.00 AEDT
Richard Scolyer was fully engaged in
the business of living when he suddenly received a death sentence. A person
more alive would be hard to find. As an endurance athlete competing across the
globe, he was in peak physical condition. As one of the world’s leading
pathologists on melanoma whose pioneering research has saved thousands of
lives, he was in demand. At 56, Prof Richard Scolyer was flying along. His
life, he says, was “rich”. And then, on the morning of 20 May 2023, he found
himself losing consciousness and convulsing on the floor in a hotel room in
Poland, panicking and scared.
After this grand mal seizure, he went for an MRI scan at University hospital in
Krakow. It found a mass in his temporal lobe. Scolyer knew immediately it had
delivered very bad news.
Having
diagnosed other people with cancer many times, he knew exactly what the finding
could mean. Most likely brain cancer. He knew the outcome for a high-grade
glioma was “shockingly bad”. That a brain tumour is incurable, and he would
have an “horrific last few months”. He descended into black despair;
devastated, anxious, terrified. He cried and cried, weeping when he rang his
children.
A biopsy
operation performed in Sydney 12 days later would confirm the “worst of the
worst”. It was an aggressive grade 4 IDH-wildtype glioblastoma – a terminal
diagnosis.
“I didn’t
want to die. I loved my life,” writes this year’s co-Australian of the Year in
his new memoir Brainstorm. Only three weeks before the seizure he had
represented Australia at the World Triathlon Multisport Championships in Ibiza.
Now the certainties had been ripped away. Now his life was measured in months
and weeks. Since that Saturday morning in Krakow he has been in unchartered
waters.
Scolyer is
remarkably optimistic for a man who did not expect to be alive when his book
came out last month. But he is. “And kicking.” If somewhat cautiously. When you
are attempting to revolutionise brain cancer treatment with a one-man clinical
trial you can’t take anything for granted.
There is a
notable absence of gravitas and ego in Scolyer. He seems humble, vulnerable. He
has a way of making it feel like this conversation is the most important thing
he has to do today. Which it most certainly is not.
Scolyer is
the most published melanoma pathologist in the world, sent thousands of the
most difficult cases each year. Soon after his own diagnosis, he decided to go
public with his diagnosis as a way of keeping friends and colleagues informed,
but mainly as a memory for his three kids. The news was greeted with an
avalanche of messages. And now we all know what the inside of his skull looks
like because his brain scans are on his social media.
For years
before his brain tumour felled him on his Polish hotel room floor, Scolyer’s
medical co-director at the Melanoma Institute Australia, Georgina Long (and his
co-Australian of the Year), had led trials using a new class of immunotherapy
drugs that had had spectacular results on patients with melanoma. “Basically
what it’s doing is stimulating your body’s own immune system to recognise
cancer cells and to kill them off,” Scolyer explains. They had learned the
drugs were more effective if given before the tumour is taken out. In 15 years,
the five-year survival rate for advanced melanoma had gone from 5% to 55%.
But while
advances had been made in melanoma survival rates, the treatment for Scolyer’s
aggressive glioblastoma had not changed in 20 years.
“Basically
this sort of tumour spreads like tree roots that run through your brain. If you
look down a microscope you can’t see where it ends,” says Scolyer. “So you can
never cure it with surgery or radiation therapy. If you tried to cut the whole
tumour out you wouldn’t have much brain left.”
Therapy
usually focused on prolonging life with chemotherapy and radiation until
palliative care and death.
From the
moment she received the MRI scans from Poland, Long had been in action,
consulting the Melanoma Institute’s world-leading experts and those around the
world. Long had pioneered the successful use of immunotherapy for melanoma
patients whose cancer had spread to the brain.
Facing up to
emotional issues has turned out to be the hardest part of having cancer.
Everyone around you suffers
Richard
Scolyer
She and the
team had been developing a plan for a radical treatment for her friend and
colleague of 20 years. They would take what they had learned from immunotherapy
and apply it to his cancer. It had never been tried before anywhere, was
seriously risky and the stakes could not be higher – there was a 60% chance the
side effects could kill him. If it caused major swelling in the brain, it could
kill him within days.
They
estimated there might be a 5% chance of saving his life; it might be less than
1%. To Scolyer, “it seemed worth it to give it a crack”.
Hoping the
tumour did not grow bigger, he would delay the debulking surgery for as long as
possible to give the drugs a chance to work. He would have a combination of
three immunotherapy drugs intravenously. Fifteen days after the seizure, the
first four-hour infusion began at the Mater hospital in Sydney. The second dose
was delayed because of side-effects, including high temperatures, a rash and
high enzymes in his liver. “I had a lot of [infusions] really close together
every two weeks at the start.”
Through it
all he kept running and cycling.
Twenty-eight
days after Krakow, craniotomy neurosurgeon Brindha Shivalingam removed pieces
of the tumour in a six-hour operation. She later admitted it had been emotional
for her operating on a friend. She was careful not to take “the Richard out of
Richard”.
Pathology
results showed his immune cells were activated and hopefully attacking the
tumour cells. “It was a phenomenal result,” Scolyer says. A possible new
frontier for brain cancer.
Working on the book, written by
journalist Garry Maddox, was “more joyful than I expected”, he says. His was a
quintessentially Australian childhood, if unremarkable, in Launceston. Sport,
camping, outdoors.
What is
clear in the book is what an emotional journey the past 18 months have been for
Scolyer.
“Facing up
to emotional issues has turned out to be the hardest part of having cancer.
Everyone around you suffers.”
He still
cries a lot. He has cried on television. There have been setbacks, side-effects
and “scanxiety” waiting for results of scans. No one, he says, who hasn’t
experienced the shock and grief of having to say goodbye to yourself can hope
to understand. “It drills down deep into your core and affects almost every
minute of your day,” he explains.
The
experience prompted a re-evaluation of his previous life and priorities.
Driven, ambitious, working too hard, he was hurtling through life, travelling
overseas 10 to 12 times a year to speak at conferences. “You get caught up in
everyday life and you don’t necessarily think about the big-picture things.
That’s changed.”
Now he knows
love is what really matters: “The one thing that has really turned around is
spending time with my family and valuing them. It has made me prioritise my
family.”
He has
received accolades and attention. But he says he would give it all back in a
heartbeat to have his old life back.
It is too
early to say if his world-first treatment is a success.
Every cell
in his body is being studied. “Ultimately you have to do clinical trials to
prove whether something works or not. We won’t know definitively until a trial
has been done. The great thing though is that we’re able to generate some
science by comparing my brain before the immunotherapy and afterwards. It gives
some scientific hope that this is worth exploring.”
After nine
infusions of the vaccine, with one more to go next month, Long has made a
decision to stop the immunotherapy. At the time of writing there has been no
sign of recurrence. But that doesn’t mean there wont be. “It is just waiting
and watching and seeing if there is a recurrence. We will manage that if and
when it happens.”
For the
moment though, “I feel very delighted that this is the path we went down.”
Brainstorm by Richard Scolyer with Gary Maddox
is out now ($34.99, Allen & Unwin)
Here is the
link:
https://www.theguardian.com/books/2024/nov/03/brainstorm-richard-scolyer-book-interview-brain-cancer
One can only
hope the good fortune continues and he remains well for many years to come – to make the story more
inspirational given he has important work still to do!
David.
