When Nigel Lokan received the all-clear from a recent brain scan, he couldn’t wipe the smile off his face. “It means I get to live for another three months, and that’s something I’m incredibly grateful for now.” Since his diagnosis with glioblastoma multiforme (GBM)—one of the most aggressive forms of brain cancer—in mid 2023, Nigel has experienced the challenges of diagnosis and treatment, and the relief of clear scans. Now he’s got a new outlook on life, and an appreciation for the time he has and the difference he can make. Nigel is a member of Brain Cancer Australia’s Consumer Advisory Panel for the Australian Brain Cancer Registry. He shared his story with us to draw attention to the need to accelerate brain cancer research.
A Sudden Onset
Nigel’s brain cancer journey began abruptly in January 2023. What seemed like an ordinary morning turned into a life-altering event when he blacked out in his car after dropping his daughter off at school.
“Next thing I remember, the paramedics were at my car asking if I was okay,” he explains. Several tests followed, revealing a seizure but no immediate concern. It wasn’t until several weeks later, after a second seizure that Nigel’s neurologist began to suspect something more serious. “I had a metallic taste in my mouth and felt a sense of fear wash over me. Everything started closing in,” he recalls. “I woke up on the couch 45 minutes later, badly cut up from falling on my face.”
Multiple tests, including MRIs and a PET scan, followed, but nothing definitive emerged at first. His neurologist asked a neurosurgeon for a second opinion. Nigel was no stranger to the medical field. As a Patent Attorney Partner at MinterEllison, Nigel’s specialisation is the pharmaceutical area, including treatments for brain conditions. His scientific background (a PhD in chemistry) offered him insight most patients don’t have, and when his oncologist finally mentioned glioblastoma multiforme, Nigel knew exactly what it meant. “When I heard GBM, it felt like I had been hit by a truck. I knew how bad it could be.”
A Devastating Diagnosis
The GBM diagnosis was a devastating blow. Nigel was aware that many people diagnosed with GBM don’t live beyond a year. The knowledge left him in a dark place. Yet, despite the grim diagnosis, Nigel’s scientific mind found a glimmer of hope.
In the middle of the night, while researching on his own, he stumbled upon a piece of information that changed his outlook. “At 3am, I found 12 lines in a journal article that enlightened me. It was a classification change by the World Health Organisation. It made me realise my situation might not be as dire as I first thought.” He discovered that two years earlier, the WHO had reclassified certain types of GBM, including his own. This reclassification suggested that his prognosis might be slightly better than initially feared.
From Treatment to Triumphs
Nigel’s treatment regimen began shortly after his diagnosis. Over six weeks, he underwent radiotherapy and chemotherapy. “I walked to and from treatments every day, doing 20 to 30,000 steps. I think that helped keep my body going,” he says. The walks, combined with his favourite music from the nineties and 2000s kept his spirits up. "I’d be cranking Metallica tunes and singing along as I walked in the sun. It took me back to happier times."
The next phase of treatment involved six months of high-dose chemotherapy, a gruelling process involving five days of high doses, and 23 days off. Despite the physical toll, Nigel’s determination saw him through, and by March of this year, his MRI results were promising. The past few scans have been even more encouraging, with the latest one being “the best I’ve seen.”
Now, Nigel is focused on living in the present. “I don’t look too far ahead. I live week to week, month to month. I’m grateful for every three-month scan that shows good results.”
It’s Time for Change
As a chemist working in the pharmaceutical space, Nigel is keenly aware of the broader landscape of brain cancer research—and it’s not encouraging. “In over 30 years, there has been very little advancement in brain cancer treatments,” he shares. “It’s the biggest cancer killer in people under 40, and yet there’s been so little progress. That has to change.”
Nigel attributes the stagnation in brain cancer research to several factors, including the challenges of penetrating the blood-brain barrier and the relative rarity of brain cancer compared to other cancers like breast and bowel. However, he thinks there’s no excuse for the lack of funding and attention, particularly when it comes to childhood brain cancer. “Watching parents lose their six- or seven-year-old child to brain cancer is just the worst of the worst,” he says.
Nigel knows the importance of collaboration, data sharing, and putting patients at the heart of research. He joined Brain Cancer Australia’s Customer Advisory Panel to provide his unique perspective as a patient to inform the development and rollout of the Australian Brain Cancer Registry. The Registry is one of Brain Cancer Australia’s three large-scale infrastructure projects our country needs to defeat brain cancer. “We have to work together. We can’t have researchers working in silos. If we do, we’ll never make progress.”
A New Outlook on Life
Nigel’s diagnosis has fundamentally changed the way he approaches life. Once focused on building a future where he could retire at 55, Nigel now focuses on living in the present. “You could work hard, plan for the future, and then drop dead before you even enjoy it,” he reflects. These days, Nigel is more focused on spending time with his family and friends, ticking off bucket-list items like building a monster drag racing car, and simply enjoying each day as it comes.
“I’ve got no idea what’s coming next, but I’m going to enjoy the next three months. And if I get another cracking MRI, then I’ll enjoy the next three after that.”
