New brain cancer trial gives hope to those with the rarest and worst type

REVOLUTIONARY TRIAL: Steven, seen here with wife Margot, is undergoing a new trial to treat his rare form of brain cancer. Pictures: MARK JESSER

REVOLUTIONARY TRIAL: Steven, seen here with wife Margot, is undergoing a new trial to treat his rare form of brain cancer. Pictures: MARK JESSER

Breanna Johnson had a simple assignment at school. Research a part of the brain and present it to the class. She asked her nurse mother Margot for help, and the 15-year-old chose to focus on the temporal lobe. 

That was in April this year. Days later her healthy 51-year old father Steven, from Rosewhite near Myrtleford, would be diagnosed with stage four brain cancer in the temporal lobe after going to hospital following a car accident.

"I had two hats on; my nursing hat on and my wife hat," Steven's wife Margot recalled upon hearing the news. "When my nursing hat's on, I realistically know what can happen, and when my wife's hat is on, it's got all the hope and positivity that you can muster."

Stephen was diagnosed with stage four unmethylated glioblastoma, a rare and aggressive form of brain cancer. For Margot, the news was shattering as she knew the prognosis all too well.

"My husband has the worst sort of brain cancer he could have so it was pretty shocking," she said.

Brain cancer can have a dementia-like effect on the sufferer. Memory problems are common and it can lead to disorientation, confusion and depression.

"I'm very mixed up and slow, and sometimes a bit like a big jigsaw puzzle," Steven explained from his home in Rosewhite in regional Victoria. "All mixed up. But I'm feeling good right now and I know I can put it all back together.

"It's going to take lots of challenges down the road, but I know I can fight it and with all the support and love around me, I'll get there."

The rarity of the cancer provided Steven with one ray of hope in his struggle with the disease. A new national trial, led by Mustafa Khasraw from the Royal North Shore Hospital, is targeting unmethylated glioblastoma, which has a prognosis of 12 months, compared to methylated glioblastoma, which is almost double.

Breanna and Steven Johnson

Breanna and Steven Johnson

"Having no methylation of the glioblastoma means more patients die in a year," Khasraw explains. "What we're trying to do is give the standard radiotherapy treatment, but instead of the chemotherapy that has been largely disappointing in this group, give them a new drug that has shown promise in other cancers."

The study is being conducted by the Co-Operative Trials Group for Neuro-Oncology (COGNO) and the National Health and Medical Research Council with support from the University of Sydney.

In addition to surgery, chemotherapy and radiotherapy, Stephen takes the experimental drug Veliparib​. The growth of the tumour has slowed since he started treatment, and although it's too early to directly link this to the trial, Margot is certain it's the cause of the success.

"Without the trial, I don't know where Steve would be in the next year," she says. "From my nursing perspective, these things go fast and the fact that standard brain cancer treatments don't work very well on these particular ones, it would've only been a matter of time."

The founders of the Wolfy Foundation, including David's parents Alan and Jackie, sister Gaby and brother-in law Alan at the fundraiser in October. Picture: WOLFY FOUNDATION

The founders of the Wolfy Foundation, including David's parents Alan and Jackie, sister Gaby and brother-in law Alan at the fundraiser in October. Picture: WOLFY FOUNDATION

The trial is largely funded by theCure Brain Cancer Foundation, an umbrella organisation founded by neurosurgeon Charlie Teo, with further funding from the NSW Cancer Council and pharmaceutical researcher AbbVie​.

The Cure Brain Cancer Foundation is supported by smaller subsidiary charities, including theThe Wolfy Foundation.

David Wolf was 22-years old when he was diagnosed with stage four brain cancer. He died less than a year later. 

His friends and family established the The Wolfy Foundation to help others affected by brain cancer. Together with Cure Brain Cancer, they raised $250,000 at their spring ball at the start of October, which goes directly to the trial keeping Stephen alive.

"For me and my parents, the spring ball  allows us to honour my brother's legacy by celebrating life the way he did," sister Gaby explained. "David had a gift of bringing people together. He had more friends than anyone I know and he treated everyone equally, regardless of their age and background." 

Dr Mustafa Khasraw is the principle investigator on the revolutionary trial. Picture: CURE BRAIN CANCER FOUNDATION

Dr Mustafa Khasraw is the principle investigator on the revolutionary trial. Picture: CURE BRAIN CANCER FOUNDATION

Like most young adults, David was out socialising any chance he could. His family and friends felt the perfect way to honour him was by throwing an annual party that would have made him proud.

"He wouldn't want it any other way," charity co-founder and friend Brad Joffe says.

While devastated by his diagnosis, David decided to live life to the fullest in the time he had.

"It was a pretty big thing to face," friend Alex Goldstein said. "But he travelled a lot with his family, and started to get his mojo back. I felt he really turned a corner in terms of positivity and optimism. He was really back to his old ways. We got glimpses of his old, optimistic self."

"He took it really rough in the beginning but he started to become pretty positive towards the end of it," Joffe recalled. "He enjoyed life. He said it to me a few times that 'I'm so happy this has happened to me because it's made me realise what life is'."

Gaby and David Wolf in Israel after he was diagnosed with brain cancer.

Gaby and David Wolf in Israel after he was diagnosed with brain cancer.

David's attitude drives the Wolfy Foundation in its aim to promote brain cancer awareness for people of all ages.

"Our goal originally was to honour a friend, but now we're pretty determined to make this into a big thing, that can really fly the flag, create awareness and raise money for this cause," Goldstein explained. "That's our mandate. We don't want to just put on a party. We want in five years to be making a tangible difference."

Steven Johnson is already seeing the impact of that effort. 

"The trial is so important for advancement for any person that goes through this," he said. "And I hope like with technology improving every day that it really takes hold and helps a lot of people overcome what I have and are going to be in this situation in the future, so they can carry on living fulfilling lives."

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