“We both know that Niels’s research will come too late for me, but I'm still very proud of my son”
PhD student Niels Van Winnendael (24) is carrying out research into radioligand therapy as a treatment for glioblastoma, while his father Filip (54) is suffering from that very same aggressive form of brain cancer. When reading this interview with two courageous men, it's best to sit down.
World Cancer Day
When cancer strikes your life, your priorities change. You realise once again that what really matters is spending time with family and friends. Life, basically. On 4 February, World Cancer Day, the world pauses to reflect on the profound impact of cancer on patients and their loved ones. Today, we are pleased to shine the spotlight on our doctoral student, Niels Van Winnendael, and his father, Filip. Their story is a reminder of why we dedicate ourselves to strengthening the fight against cancer every day, through both research and production.
A hard diagnosis during full lockdown
In 2021, Filip, who had just turned 50, started experiencing flashes of light. After six weeks of tests at the hospital, the verdict was given: brain cancer. And a glioblastoma at that. This is the most common form of brain tumour, but also the most aggressive. The flashes, essentially epileptic seizures, were caused by a growing tumour that was pushing ever more persistently against Filip's brain. The average life expectancy after a glioblastoma diagnosis is 12 to 15 months.
Filip: “Of course your world comes to a standstill. After an initial procedure, it was found that a bit of the tumour had been left behind, so a second operation soon followed. The first operation reduced my vision to 70% and the second to 50%. That was something I have learnt to live with. Along with the idea that I would never get better.”
Meanwhile, Filip has now been living with his illness for more than four years and is also working full-time again: “During treatment, the doctors looking after me signed me off from my work and in the period that followed, I was ultimately made redundant. But as always, I didn't rest on my laurels and so went off in search of new work. Meanwhile, I'm back working full-time again in the IT sector and I really enjoy doing my job.”
Niels: “When Dad got sick, I was in the second year of my bachelor's degree in biomedical sciences at VUB. He went into hospital right in the middle of the second lock-down and also in my revision period. There was no conclusive diagnosis as yet and no-one was allowed to visit Dad. For six weeks, he was receiving strong cocktails of anti-epileptic drugs and couldn't even call us as a result. Because the hospital was overwhelmed as a result of the pandemic, doctors and nurses had little time to keep us updated. We therefore didn't hear anything from him for almost six weeks. That was very hard.”
Immunotherapy at UZ Brussel
The two operations were followed by radiotherapy and chemotherapy. But as expected in the case of a glioblastoma, the results were only moderate. After two years, the tumour returned and a third operation followed. Fortunately, Filip was also able to join a subsequent immunotherapy study at UZ Brussel.
Niels: “That particular form of treatment has actually been found to have a very positive effect on patients with a glioblastoma. But it's important to note that, at best, the drugs are life-extending, not life-saving and that is the case for my Dad. But I'm very happy that Dad had the courage to act as a guinea pig in this study. That way, we are both contributing towards the advancement of science.”
Filip: “Why wouldn't I have taken part? Without taking part, my prospects weren’t exactly great.”
Radioligand therapy for glioblastoma
After obtaining his master's degree, Niels decided in 2024 to carry out doctoral research (PhD) in pharmaceutical sciences at SCK CEN and KU Leuven to investigate radioligand therapy as a treatment for glioblastoma. Would he have made the same choice if his father had not been struggling with that very same form of brain cancer?
Niels: “I don't think so. I always found cancers fascinating, though, as they significantly impact the world around us. But I'm not making things easy for myself by choosing this type of cancer. The chances of finding a form of treatment that works are much lower than in other cancer trials. Without Dad's illness, I might have chosen something else.”
If everything goes according to plan, Niels’ doctorate will be completed in three years’ time. What will he do after that? “We'll have to see. Maybe glioblastoma and radioligand therapy will continue to form the common threads within my career.”
HHooww ddooeess rraaddiioolliiggaanndd tthheerraappyy wwoorrkk??
As big as a golf ball
“Glioblastomas are usually not detected until they're already the size of a golf ball, or even a tennis ball,” said Niels. “They're also very deadly, as the cancer cells have long, invisible offshoots leading to other parts of your brain. During surgery, you can never actually remove them completely, even if you cut them out with a wide margin and that, in itself, is already difficult to do in the brain.”
Filip: “We both know that Niels’s research will come too late for me, but I'm still very proud of my son.”
Niels: “Dad gives me the inspiration and motivation to go all the way. In that sense, he is very involved. I am researching glioblastoma because I don't want others to go through what I'm having to go through. My dream is that, in the near future, people whose father or mother receive this diagnosis will know that they will have for another 20 years or so. Glioblastomas, by the way, are not hereditary and the causes are virtually unknown. Unfortunately, it's just incredible bad luck.”
Since Filip's cancer diagnosis, the impact of science has become very tangible for Niels: “Suddenly I was projecting everything I was learning onto Dad. That included conditions such as heart disease or skin conditions that had nothing to do with cancer. That way, I tried to consider whether the treatments used for those conditions could also be applied to the treatment of glioblastoma. That helped me memorise the course content more effectively and increased my motivation.”
Which GPS works best?
In radioligand therapy, a carrier molecule delivers a radioactive isotope directly to the tumour and/or the metastases. The cancer cells are then attacked with extreme precision, while the healthy tissue surrounding them is largely unaffected.
Niels: “Think of the carrier as a car with a high-precision GPS that is towing a trailer with radioisotopes behind it. My research involves examining which type of carrier is most suitable. Which one will get the cargo to its destination the fastest? Which one will keep the cargo at its destination the longest? For this purpose, the carrier may be a chemical module, for example. Or a protein. Both are already being used in studies taking place in a hospital setting.”
Fitness, narration software and eating out
How is Filip doing in the meantime? “Very well. I just had radiotherapy again and am receiving chemotherapy five consecutive days a month. That chemotherapy is exhausting each time, but at the times in between I feel fine. In addition to working full-time, I also exercise three to four times a week. Especially indoor cycling, fitness and mountain biking. I also go out for a nice meal with friends and family on a regular basis, if possible, as extensive and as leisurely as possible. I'm actually still doing everything I love doing. My narrower field of vision is my only limitation. I'm already running into things and there are periods when I cannot or should not drive. Reading is also more difficult, but with narration software, I'm managing fine. And at the table, I can't always immediately see what ends up on my plate. Suddenly, those potatoes just appear there. My daughter sometimes makes a game of it (laughs).”
Seize the day
Is Filip already busy working his way through his bucket list? “No, I'm letting things come along as they arise and am taking them as they are. Carpe diem. I'm also not passing up any opportunities to travel. Niels and I just got back from three weeks in Sweden.”
Niels: “We're travelling at a slower pace than before, but are also enjoying that slower pace. Taking ample time to eat breakfast, for example, is quite nice. In fact, the whole family has started to live more consciously. We used to make fantastic plans for the next 20 years. But in the past four years, it was sometimes only possible to look a week, a month or, at the most, a year ahead.”
“In the past, I would be out of the house all the time,” continued Niels. "But now, I like to spend time with my parents. Four years ago, Dad was suddenly given what amounted to an expiry date and that changed everything. We're lucky that together, and thanks to the good medical care at UZ Brussel, we have already been able to push that date forward a few times. Quality time together has become a scarce commodity, so we're using it carefully.”
Filip: “And above all, we're not losing our sense of humour either and are looking at our lives with positivity.”
