Chapter 1: From Diagnosis to Determination

A little over a year ago, glioblastoma was something I barely knew existed. Today, it has become a major part of my life.

This first blog post summarizes what happened during that year — from the first unexplained headaches, through diagnosis and treatment, to where I am today. It is also the starting point for this website, where I will continue sharing my journey, my research and the treatment options I am exploring.

It started with headaches

During the summer of 2025, I started experiencing increasingly severe headaches. Eventually, my GP referred me to a neurologist. On 16 October 2025, an MRI changed everything.

The scan showed a tumor in the right temporal part of my brain. On 3 November 2025, I underwent brain surgery and the visible tumor was successfully removed. Pathology confirmed the diagnosis: glioblastoma, WHO grade 4, IDH-wildtype.

Standard treatment — and the search for more

In December 2025, I started the standard treatment for newly diagnosed glioblastoma: six weeks of radiotherapy combined with temozolomide chemotherapy.

Radiotherapy went relatively smoothly, but chemotherapy had to be stopped after around four weeks because my platelet count dropped dramatically. Fortunately, my bone marrow recovered and I was later able to continue with adjuvant temozolomide.

At the same time, I started asking an important question:

What else can I do?

Glioblastoma is an extremely heterogeneous disease. One treatment does not necessarily work equally well for every patient.

Together with my parents, doctors, scientists and other people who have helped me along the way, I started reviewing clinical studies, molecular data and treatment options available beyond standard care.

That search quickly became international.

Adding Tumor Treating Fields

One of the first major additions was Tumor Treating Fields (TTFields / Optune).

TTFields use alternating electrical fields to interfere with cancer-cell division. They are part of standard treatment in several countries but are not reimbursed for glioblastoma patients in the Netherlands.

After contacting centers across Europe, I obtained access through Hospital Ruber Internacional in Madrid and started treatment in February 2026.

Since then, Optune has become part of everyday life. I wear it almost continuously — while working, exercising, travelling and spending time with my family.

A personalized cancer vaccine

In parallel, my blood and tumor material were sent to Tübingen, Germany, where extensive molecular analyses were performed to develop a personalized peptide vaccine. The idea is to identify targets specific to my tumor and train my immune system to recognize them. Designing and manufacturing such a vaccine takes months.

In July 2026, after more than half a year of preparation, I finally received my first personalized peptide vaccinations.

For me, that was a major milestone: genomic data and tumor tissue had been translated into an actual personalized treatment.

The scans remained clear

Meanwhile, my follow-up MRI scans continued to show no evidence of recurrence.

The MRI in April 2026 was clear, and the next scan on 10 July 2026 was again stable with no signs of local recurrence. Every clear MRI is an enormous relief.

But I have also learned not to confuse a clear scan with being cured. Glioblastoma is known for microscopic disease that conventional imaging cannot detect.

That is why my strategy remains proactive: use periods of stable disease to make it as difficult as possible for the tumor to return.

Thinking several steps ahead

During the spring of 2026, I began exploring the next generation of personalized treatments, including:

• personalized mRNA cancer vaccines;

• CAR-T cell therapy;

• CAR-NK cell therapy;

• additional immunotherapies;

• targeted and repurposed drugs;

• and more sensitive methods of monitoring residual disease.

Some of these treatments are experimental and uncertainty remains high.

I do not believe every experimental therapy works. Many glioblastoma trials have failed.

But I also believe that failure in a broad clinical trial does not necessarily mean that a treatment has no value for every patient. Glioblastoma is highly heterogeneous, and certain therapies may benefit specific biological subgroups.

That idea has become central to the way I approach my disease.

Becoming a researcher of my own tumor

Over the past year, I have accumulated an enormous amount of information: pathology, genomic sequencing, RNA data, immune markers, imaging, blood results and scientific literature.

What started as trying to understand my own diagnosis gradually became something much larger.

I began building a detailed molecular model of my tumor and systematically reviewing research that might be relevant to it.

I am not a medical doctor and I do not pretend to be one.

But my professional background has taught me how to analyze complex systems, work with data, challenge assumptions and make decisions when the information is incomplete.

I have also been fortunate to connect with physicians, scientists, statisticians, researchers and other patients who help me test ideas and distinguish promising approaches from speculation.

The financial reality

There is another part of this journey that cannot be ignored.

Many of the treatments I pursue are not reimbursed in the Netherlands.

Optune alone costs well over €100,000 per year, while the personalized peptide vaccine costs around €80,000. When consultations, testing, travel and other treatments are added, the financial burden becomes enormous.

We could never have done this alone.

Friends, family, colleagues and even people we had never met organized fundraising campaigns, runs, concerts and other initiatives. Their support has given me access to treatments that would otherwise have been out of reach.

Ultimately, these treatments are about one thing: time.

More birthdays. More holidays. More ordinary days. More time with Lisette, Olivia and Philou.

Why I created this website

During this journey, I discovered how difficult it is for glioblastoma patients to understand the treatment landscape.

Information is fragmented. Clinical studies are difficult to interpret. Treatments available in one country may not be available in another. And once patients look beyond standard treatment, they encounter a confusing mixture of promising science, experimental medicine, commercial claims and sometimes misinformation.

I have spent countless hours trying to separate these.

This website grew out of that work.

My goal is to document what I have learned, explain treatment options in understandable language, review relevant scientific evidence, identify specialized treatment centers and explore how molecular and clinical data might help identify treatments that are particularly relevant to individual patients.

This website is not medical advice and cannot replace a specialized neuro-oncology team.

But perhaps it can help patients ask better questions, discover options they did not know existed and have more informed discussions with their doctors.

Where I am today

As I write this in August 2026, one year has passed since the GBM symptoms started.

I have undergone surgery, radiotherapy and chemotherapy.

I am using Tumor Treating Fields.

I am receiving a personalized peptide vaccine.

We are investigating additional personalized immunotherapies and cellular treatments.

Most importantly, my scans have so far remained clear and I feel physically strong.

I know the statistics, and I know there are no guarantees. But statistics describe populations. They do not determine what happens to an individual.

So my strategy remains simple:

Understand the tumor. Follow the evidence. Look for vulnerabilities. Keep planning ahead. And keep living.

This blog will continue from here.