Questions I'm asked most

These are the questions caregivers and patients write to me most often, gathered in one place. They're based on my own experience — not medical advice. Take anything useful here to your own neurosurgeon and neuro-oncologist; every glioblastoma is different.

For patients who have not yet had surgery

What should I discuss with my neurosurgeon before the operation?

These were both options I was not presented with, and in retrospect I would have liked the chance to discuss them. Two things are worth raising before surgery, as they depend on choices made during the operation:

Dendritic cell (DC) vaccines. These use your own immune cells and typically require tumour tissue to be preserved in a specific way during the resection surgery itself — so it's important to raise this in advance. In India, DenVax is one such dendritic cell vaccine option you can ask about.

5-ALA guided surgery. 5-ALA is a substance that makes tumour tissue fluoresce under special light during the operation, helping the surgeon distinguish tumour from healthy brain and achieve a more complete removal. Ask your neurosurgeon whether it's available and appropriate for your case.

Should I think about fertility before treatment starts?

If you're hoping to have children, raise this with your treating team straight away. Chemotherapy can affect fertility in both women and men, and options such as freezing eggs, embryos or sperm need to be explored in the short window — usually a few weeks — between surgery and the start of radiation.

Did you have a biopsy?

I was not advised a separate biopsy — the tumour sample was taken during my surgery itself. In some cases, depending on the tumour's location, size, and other factors, a separate biopsy may be advised. You can check with your neurosurgeon on this.

After surgery, before radiation

Which type of radiotherapy should I ask about?

It's worth asking your radiation oncologist about the choice between photon and proton radiotherapy, and which is more suitable for your situation.

What side effects should I expect from radiation?

These can range widely — from fatigue and severe acne (from the heat of the radiation) to, in my case, severe constipation, brought on by the six-week regimen combining an anti-nausea medication with concomitant temozolomide. Each of these can be addressed, but it's better to anticipate them in advance.

Hair loss can also start at random, and at different times for different patients. I'd ideally have shaved my head at the outset, rather than seeing big clumps of hair fall out — that can be quite mentally distressing.

The CeGaT personalised peptide vaccine

What is it?

It's a personalised neoantigen peptide vaccine made by CeGaT in Tübingen, Germany. They sequence your tumour tissue to design a vaccine specific to you, then manufacture it. It requires a tumour sample from surgery and a blood sample.

Standard radiation and chemotherapy can continue while it's being prepared. The published real-world results are in Latzer et al., Nature Communications (2024): nature.com/articles/s41467-024-51315-8

How long does preparation take?

Roughly four to five months from start to first dose. Genetic sequencing of the tumour sample takes about a month; once you confirm you want to proceed, vaccine production takes a further few months.

How many doses and trips are involved?

There are 14 vaccinations in total, which work out to about 11 trips. On the first visit, four priming doses are given over 4–5 days; each subsequent visit administers one shot.

Visits start every 4–6 weeks and, with a positive immune response, the interval can stretch to two or three months. The full course runs over roughly 1.5 years.

How much does it cost?

Approximately 70,000–80,000 euros for the vaccine programme itself. Travel and accommodation are completely additional, so budget for those separately.

Can I get it in India?

Unfortunately not. Because it's an experimental treatment it can't be shipped out and must be administered on site. The vaccine is produced in Tübingen, Germany.

A partner clinic in Vilnius, Lithuania offers the same approach and quality — sequencing and peptide synthesis are done in Germany, while administration happens in Vilnius.

How do I start the process?

You'll need a referral from your oncologist to the programme, then some paperwork. After they receive your tumour tissue and blood sample, they run the analysis and, once you confirm, begin manufacturing. Tumour tissue can be shipped via a courier such as DHL or FedEx.

Are there side effects? Does age matter?

I haven't experienced side effects myself, and age isn't considered a major factor for the vaccine.

This is broadly consistent with the published data: in the Latzer et al. study, adverse events were infrequent and predominantly mild (grade 1 or 2).

Do I need a special visa?

No special visa is needed — it's a standard Schengen visa, with the purpose of visit given as medical treatment. CeGaT provides a supporting letter and documentation to help make the case for a longer-term, multiple-entry visa, which is useful given the number of trips.

How do you manage the frequent travel?

You can read about my experience in detail here.

Other immunotherapy options

Are there other immunotherapy centres?

Another centre some patients explore is IOZK in Cologne, Germany, which offers its own immunotherapy approach. I have no personal experience with it, but it's worth discussing with your oncologist as an option to research.

There are also premier institutes within India, such as Tata, that may be working on innovative new treatments. It's worth checking with your doctors about any options that might be available for you.

Optune — Tumour Treating Fields

What is it, and how did you access it?

Optune is a wearable device. I was prescribed it through a doctor in London. To show a positive effect it needs to be worn for at least 18 hours a day.

It's worn more or less continuously, and the arrays need changing every 3–4 days, depending on how the individual's skin responds. Most caregivers manage this and get used to it after a few times; no nurse is needed.

More detail is on the official Optune Gio site: optunegio.com

How much does it cost?

It is very expensive — around £20,000 per month.

What is it like to live and travel with it?

You can read about my experience in detail here.

Lifestyle

What did you change about food?

I followed a personalised, nutritionist-guided diet throughout, alongside some natural supplements. I'd suggest working with a qualified nutritionist who can tailor a plan to the individual.

You can read about my experience in detail here.

How did you stay active?

I found it important to keep up regular exercise, including strength training to rebuild the muscle I lost during chemotherapy.

You can read about my experience in detail here.

How did you look after your mental wellbeing?

Regular breathing exercises and keeping stress under control made a real difference. I had already been seeing a therapist for a couple of years before my diagnosis, so I only connected with them once in a while — but many patients and caregivers may benefit from having someone to share with.

You can read about my experience in detail here.

Please read this. Everything above is my own experience and the things I personally learned along the way. It is not medical advice, and it is not a treatment plan. Every glioblastoma is different, and every decision here should be made with your own neurosurgeon, neuro-oncologist, and treating team. Treatments, drug approvals, and costs also change over time. If anything here is useful, take it to your doctors and ask them about it — that's exactly what I hope you'll do.

I have no commercial affiliation with any of the institutes, centres, clinicians, or companies mentioned here. I share them only as a starting point for your own research.