We learnt early on that a personalised approach could potentially offer us more information and more options than standard of care alone. It felt like the future of cancer medicine. How could treating the individual biology of someone’s cancer not be important?

We were initially told there was nothing else out there, but with a little digging we heard about other patients who had been treated through CeGaT in Germany. This eventually led us to tumour genetic diagnostics and the personalised peptide vaccine, which we fundraised to be able to pay for.

At the very least, detailed genetic tumour diagnostics can provide information that may help inform personalised treatment decisions, going much further than the basic IDH and MGMT methylation status we received through the NHS.

We opted early on to combine the tumour diagnostics with a personalised neoepitope peptide vaccine.

WHAT IS CECAVA (FORMERLY CEGAT)?

When Stu was treated in Germany in 2021, we knew this treatment through CeGaT. The personalised cancer vaccine work is now being developed by CeCaVa, so if you are researching this treatment today, CeCaVa is the name you need to look for. CeCaVa develops personalised neoepitope peptide vaccines.

The process starts by sequencing an individual patient’s tumour alongside a matched normal sample to identify mutations that are specific to their tumour. Potential tumour-specific targets, called neoepitopes, can then be identified and prioritised. Selected peptides are manufactured into a vaccine specifically for that patient.

In my own very basic way of describing it, cancer cells can be incredibly good at evading the immune system. The peptides are a little like warning flags, helping train the immune system to recognise specific targets associated with the tumour. CeCaVa now uses its own AI-based algorithms as part of the process of identifying and prioritising which neoepitopes may be most relevant for an individual vaccine.

OUR EXPERIENCE

We started the process with CeGaT and had a Skype consultation with Dr Saskia Biskup before we changed to Stu’s second oncologist. It was possible to work with CeGaT independently, but we found it much easier once we had an oncologist willing to work alongside them.

One of the things we discovered very quickly was that not every UK oncologist was comfortable looking beyond standard of care. We eventually found doctors who were much more accustomed to dealing with personalised diagnostics and treatments outside standard of care, which made navigating everything considerably easier. As part of Stu’s tumour analysis we received information about the peptides identified for his vaccine as well as information about potentially relevant therapeutic treatments based on the genetic sequencing.

WHAT WE PAID IN 2021

Stu’s tumour neoantigen diagnostics cost approximately €10,000. The diagnostics took around ten weeks for us. At the time, we understood that this process was becoming quicker, but anyone considering it now should ask CeCaVa directly about current turnaround times. There was then a further wait while Stu’s personalised peptide vaccine was manufactured.

During our first trip to Tübingen in Germany, Stu received his first four vaccinations as part of the initial training phase. The following vaccinations were then given at intervals over the following months. Pricing was individual because the vaccines could contain different numbers of peptides. Stu’s vaccine treatment cost approximately €39,000, plus approximately €3,000 for immune monitoring.

These are the prices we paid in 2021. They should not be taken as current CeCaVa pricing. Please contact CeCaVa directly for current information about eligibility, process, treatment costs and timelines.

GETTING THE TUMOUR SAMPLE TO GERMANY

This is one of the things I wish we had understood immediately after Stu’s surgery. We heard stories from other patients whose tumour samples had not been stored in a way that allowed them to proceed with certain personalised treatments. If you think you might want additional tumour testing, genetic analysis, vaccines or other treatments that require tumour tissue, ask about your tumour sample as early as possible. We were able to access Stu’s samples through the pathology department.

CeGaT sent the transport kit directly to the hospital and helped us arrange transportation of the tumour sample back to Germany. Our GP very kindly took the blood samples we needed and we returned the blood kit with CeGaT’s help. We also heard about problems accessing suitable tumour samples from patients trying to pursue other treatments, including DCVax.

The exact amount, type and preparation of tumour and blood samples required will depend on the test or treatment, so please check directly with the organisation involved rather than relying on our 2021 process. But if I could go back to the days immediately following Stu’s diagnosis, finding out exactly what tissue had been retained, where it was stored and how we could access it would be very high on my list.

2026 UPDATE

THINGS HAVE MOVED ON

There is considerably more information available about personalised peptide vaccination in glioblastoma now than there was when we were trying to make these decisions for Stu. In 2024, a peer-reviewed study reported on 173 people with glioblastoma who had received personalised neoepitope peptide vaccines alongside their other treatment.

The vaccines were generally well tolerated, with mainly mild and temporary side effects reported. In the group where immune responses were investigated, the majority developed T-cell responses against one or more of the neoepitopes included in their vaccine. The survival data reported by the researchers was encouraging, but there is an important caveat: this was real-world observational data, not a randomised controlled clinical trial. That means it cannot tell us on its own how much of any difference in survival was caused by the vaccine.

CeCaVa is now preparing a Phase 1/2 clinical trial in newly diagnosed glioblastoma, where patients would receive standard of care alongside a personalised neoepitope peptide vaccine based on the individual mutations within their tumour. That is a very different landscape from the one we were looking at in 2021.

If you are researching this now, please start with CeCaVa’s current information and research rather than relying on our old costs, timings or treatment process.

HINDSIGHT

WHAT WE KNOW NOW THAT WE WISH WE'D KNOWN THEN:

We first heard about CeGaT through another patient. One of the things that made everything more difficult was that we hadn’t collated all of Stu’s medical notes because we simply didn’t realise at the beginning that we were going to need them. Then suddenly we were trying to gather scans, pathology, reports, blood results and tumour samples while simultaneously dealing with a glioblastoma diagnosis.

Time is of the essence.

If I were doing this again, gathering every piece of medical information and finding out exactly what tumour tissue was available would be one of my very first steps. Having witnessed Stu’s treatment during standard of care, we strongly believed that more detailed genetic diagnostics should be integrated much earlier into the diagnostic process. One size doesn’t always fit all.

Standard of care didn’t work for Stu in the way we desperately hoped it would. There were other personalised and metabolic approaches that appeared to be doing something, although of course we can never know exactly what effect any individual treatment had.

WE HAD THE DATA. WE JUST DIDN'T KNOW WHAT TO DO WITH IT. 

This is another thing I would do very differently now. By the end, we had an enormous amount of information about Stu’s tumour from CeGaT, Alacris, Cellworks and different doctors. The problem was that we weren’t oncologists, geneticists or scientists. We could read the reports. We could Google individual mutations. We could send information to different doctors. But understanding what hundreds of pages of genomic and medical information were actually telling us, how one report related to another and what questions we should be asking was another matter entirely. This is one area where things feel completely different in 2026.

I’ve since seen a patient use AI to help interrogate and cross-reference this kind of information and the results have been incredible. It can help translate incredibly technical information into normal language, compare findings across different reports and help you understand what questions you might want to take back to your medical team.

I would never use AI as a replacement for an oncologist or specialist medical advice, and I wouldn’t ask it to decide what cancer treatment someone should have. But would I use it now to help me understand the information sitting in front of me? Absolutely. I wish we’d had that tool. We had the data in 2021. What we didn’t always have was the ability to make sense of all of it.

And interestingly, AI is now part of the technology itself. CeCaVa says its current platform uses proprietary AI-based algorithms to help identify and prioritise the neoepitopes used to create its personalised vaccines.

TRAVEL TO TUBINGEN

Travelling to another country for treatment has lots of layers to it. Travelling with my husband who had brain cancer, and whose abilities were affected by the position of his tumour, required a lot of planning. Long queues at airports, luggage, walking distances, cabin pressure and simply getting an exhausted and unwell person from A to B were all things we had to think about. For us, it was much easier when someone else travelled with us to help. Everything below is based on our experience travelling to Tübingen in 2021, so please check current flights, transport, hotels, insurance and treatment arrangements before making plans.

FLIGHTS

We flew from London Heathrow to Stuttgart. We used British Airways and Eurowings during our trips.

TRANSFERS & TAXIS

We used a local company called Taxi Maxi for transfers. We arranged the taxi before arriving rather than taking an airport taxi and found this worked well for us. Hotel Krone was also able to organise taxis for us, although we found this a little more expensive.Please check current operators, prices and contact details before travelling.

INSURANCE

Finding travel insurance for someone undergoing cancer treatment was difficult for us. At the time, we couldn’t find an insurance company that would give us the cover we wanted, so we travelled with our UK Global Health Insurance Cards, which unfortunately we did have to use during our second trip. We were also told about Insurancewith, which specialises in travel insurance for people with medical conditions including cancer. Insurance products and eligibility change, so please investigate current cover carefully before travelling for treatment.

ACCOMMODATION

We stayed at Hotel Krone in Tübingen. When we travelled in 2021, the hotel offered a discount for CeGaT patients. We stayed in two different types of room. One was a family room and the other had a small kitchenette and easier access. If I were going again with someone who was unwell, I would choose the room with the kitchenette and easy lift access. Those seemingly tiny practical details become incredibly important when someone is exhausted or struggling physically.

Hotel Krone is at:

Uhlandstrasse 1
72072 Tübingen
Germany

Please contact the hotel directly for current room availability, accessibility information, rates and any medical-treatment discounts.

Food

We didn’t speak German, so Google Translate became our friend when we were out eating. We ate at the hotel restaurant, Ludwigs, and also used room service. We found a beautiful Italian restaurant called Al Dente, which Stu loved. There were also takeaway options around Tübingen. Again, this was our experience in 2021, so check what is currently available before relying on any of our recommendations.

GETTING TO TREATMENT

There was a bus available from the bridge close to Hotel Krone, but because of Stu’s condition we generally used taxis. For us, reducing the physical effort involved in travelling was worth it. That is probably my biggest practical piece of advice about travelling abroad for treatment: make the journey as easy as you possibly can. You don’t get a medal for navigating three trains and a bus with someone who has a brain tumour. If you can afford the taxi, get the bloody taxi.

CURRENT INFORMATION

CeCaVa is the organisation now developing the personalised neoepitope peptide vaccine technology that we knew through CeGaT during Stu’s treatment. For current information about the technology, research, clinical programmes, eligibility and contact details, please go directly to the CeCaVa website.

cecava
[formerly cegat]