When Duncan Campbell saw his son walking through the streets of New York, he began to think his gamble might have paid off.
Duncan Jr had performed a Fringe show — The Suicide Notes — about his struggles with mental health after a brain cancer diagnosis during which his condition had deteriorated to the point that his mother, in the front row, had to call out words he had forgotten.
“Before the first session of treatment, Dunk could walk maybe 100 metres before he got significant back pain,” said Campbell. “He only had an eighth of his vision and was walking with a white stick.
“He didn’t need the stick anymore after his first session. He didn’t even want to take his mother’s arm. And he walked for five miles through New York, doing videos for his Instagram. New York is not an easy city to walk around even if you can see where you’re going. So we were really pleased.”
Duncan Jr, who died last month aged 31 after a three-and-a-half year fight with the disease, had flown with his father, and mother Caron, to take part in a trial using pioneering technology to treat glioblastoma, an incurable brain cancer.
A rugby player, he had originally trained as a gas boiler engineer but found renewed purpose in life in acting, appearing in numerous amateur productions before his diagnosis in 2021.
“I had been using how fast he could read a pack of playing cards as a measurement,” said Campbell, a consultant oral and maxillofacial surgeon at Victoria Hospital, Fife.
“He had no symptoms at all after the treatment, he was only drowsy from the general anaesthetic. Not even the slightest headache. The only thing he had was dents in his scalp from the head frame.
“His ability to read cards became pretty fast. Before, he’d never really done better than 16 minutes, and he was at half an hour before he went for this treatment. After it, he went down to eight minutes. Right number, right suit. He felt it was a significant change, and he felt much better.
“And he felt creative again. He wanted to write a story and some poetry. It was the first time he had done this in a long time.”
On average, adults diagnosed with glioblastoma have a life expectancy of 12-18 months. When the family flew to America last December to take part in a trial for a tumour treatment known as sonodynamic therapy, Campbell had already exceeded medical expectation by several months.
The trial, which targets cancer cells using ultra-sound technology and fluorescent dye to obliterate malignancies which remain following other treatments such as surgery, chemotherapy and radiotherapy, has not been cleared by health regulatory authorities in the UK.
“A win could be maybe five or ten years, which we knew would be a rare event,” said Campbell, from Lower Largo in Fife. “No one had ever had the regime of chemotherapy my son had, and he was one of the first people in the world to receive this sonodynamic therapy treatment. We were prepared to bet anything on it.”
Last August, Campbell, the brother of BBC Scotland Scottish Home of the Year presenter Danny Campbell, staged a one-man show at Edinburgh’s Fringe festival. The Suicide Notes detailed the actor’s battles with, and recovery from, poor mental health.
“He loved doing the show, he even loved leafleting,” said his father. “Everyone else is leafleting for comedies, and he was leafleting for The Suicide Notes. But he just loved meeting people and talking to them.
“His vision got worse throughout the show to the point where by the end it was a struggle for him to see anything, even to stand in the right place. At the start of the run, his mum was at the front to hold prompt words to help him with his memory problems. By the end he couldn’t see them, so she would just tell him the words. That became part of the joke of the show.”
Days after his Fringe finale, Campbell was hospitalised following a huge seizure which left him unconscious. Doctors told his family he had days to live.
His father said: “We’d been sent messages of support from Gregor Townsend and John Beattie. Dunk was a big rugby fan and we played them to him. He gradually recovered enough consciousness that I felt he could get into a chair.
“We discharged him and were able to get him home, and palliative care came out. But gradually he began to pull back.”
A similar seizure several months later in New York forced the family to return home from the trial, where he underwent further radiotherapy and chemotherapy treatments.
“His seizures took away his speech and we never knew if it would come back. My son would tolerate blindness but if you took his speech away, he wouldn’t want to live.
“But listening to him and the nurses from outside the radiotherapy room was like standing outside a pub. Totally raucous. It was the highlight of his day.”
Campbell now hopes funds can be raised to advance European trials of the treatment, pioneered by US-based biotech company SonALAsense and supported by the Dundee-based brain surgeon Kismet Hossain-Ibrahim.
Among the results from primary studies, Hossain-Ibrahim, who works at the city’s Ninewells Hospital, points to “incredibly promising” outcomes from trials in the US on a similar type of tumour in children.
He said: “They treated 15 patients, and for the first 12, 80 per cent were still alive after nine months. The average survival time is nine months. The damage the tumour causes to the brain is reversed. Some started walking again and some got their sight back.”
The neurosurgeon now hopes to find backers for international research partners for further studies to be held in Milan.
“Millions of pounds are being poured into things that don’t work,” he said. “I feel like a shepherd calling out to a flock of sheep, all going down the targeted chemotherapy pathway.
“We don’t know yet whether sonodynamic therapy can cure glioblastoma. But what if it makes it into a chronic treatable condition? It’s painless. There’s no hole in the skull, or shaving of the head, or cutting of the skin.
“You can see from people like Dunk, this treatment is safe, repeatable and works. We now need to get more patients from the UK into a clinical trial that would allow us to ask for accelerated approval for use here.
“The cost of the trial to treat 15 to 20 patients is £2 million. We’re hoping that there are philanthropists, charities or even venture capitalists out there who are willing to help us.”
Campbell is confident his son’s legacy will eventually form part of a successful outcome, leading to life-changing outcomes for others with glioblastoma.
He said: “Somebody, someday, is going to get on top of this. The science behind the treatment makes lots of sense.
“Patients who take part in trials should be thought of as front-line infantry. They’re the soldiers. You’ll never be short of brave young men who’ll go to war, and you’ll never be short of brave young patients prepared to do something like this. We should give them medals.”
Funding Neuro: fundingneuro.com/dundee-ultrasound-appeal-dipg-and-glioblastoma-starting-2022/
