Read ANOTHER NEXT STEP →
We learnt early on that a personalised approach would be more beneficial than anything that could be provided under standard of care here in the UK. It’s the future of cancer medicine - how could it not be? We were told there was nothing out there, but with a little bit of digging we heard about patients who had been treated at Cegat. This led us to the personalised peptide vaccination which we fundraised to be able to pay for.
At the very least the genetic tumour diagnostics provide the information needed for personalised treatment decisions. And not just the basic IDH and methylated status that is provided in the UK under the NHS. This link explains far better than I ever could how the diagnostics work.
We opted early on to combine the tumour diagnostics with the neopeptide vaccine. This is a different process and the information about it is here.
The personalised cancer vaccine boosts the immune system’s response to cancer. In my own very basic way of describing it – the cancer cells are so sneaky that they have the ability to switch off the body's immune system so that they don't get recognised as the enemy. The peptides are like tiny little warning flags that the body's immune system is trained to recognise and destroy.
As part of this report you are given information on the peptides discovered that will make up the vaccine and also a list of therapeutic treatments that are relevant to the genetic sequencing.
What is Cegat?
In their own words:
"WE ARE YOUR GENETIC EXPERTS"
"We are a world leader in gene analyses for a wide range of medical, research and pharmaceutical applications. Since 2009, we have been helping doctors and patients find the genetic causes of rare diseases. We provide researchers and pharmaceutical companies with genetic analysis for clinical trials and medical innovation. We help oncologists and cancer patients find the best therapy option. We continue to drive science forward with our own insights"
We started the process with Cegat and had the skype consultation with Dr Saskia Biskup prior to changing to Stu's second oncologist. It is possible to work with Cegat independently but easier if you can get your oncologist to work together with them. Not all UK oncologists are open to anything outside SOC but there are several oncologists in the Uk who are used to dealing with Cegat and safely look at treatments outside SOC.
Tumour neoantigen diagnostics cost was approx 10,000 euro
It took approximately 10 weeks for the diagnostics but I think the time has reduced now to 4-6 weeks and then a further 12 weeks for the peptide vaccine to be ready - starting this process as early on as possible is vital.
During our first trip to Tubingen in Germany Stu received the first four vaccines. This is known as the training phase. The following 10 vaccines are then given every 3-6 weeks. The pricing is different for each patient dependent on how many peptides they contain. Stu's treatment cost 39000 euro plus immune monitoring which is 3000 euro
We heard stories from other hopeful patients that their tumour sample hadn’t been stored correctly and they were unable to proceed. It’s so important that samples, even from a biopsy are stored correctly by the operating team. We were able to access the samples via the pathology department. Cegat sent the transport kit direct to the hospital and they helped us transport the sample back. Our GP very kindly took the blood samples for us and we sent the blood kit back with Cegat’s help. Trouble with tumour sample storage has also been reported when patients have tried to access the DCVAX treatment. Information for exactly how much tumour sample and fresh blood samples Cegat require can be found here.
The pricing for the other diagnostics is different and because we didn't do that I don't know what they are. The details for it are here.
We first heard about Cegat through another patient, we didn't find it easy to co-ordinate everything needed because we hadn't collated all of the medical notes (not realising that that was necessary) - time is of the essence so this step should be one of the first. Having witnessed Stuart’s medical treatment during standard of care we strongly believe that genetic diagnostics should be integrated early into the diagnostic plan – because the right diagnosis is the basis for optimal management of cancer. One size doesn't always fit all. The SOC treatment didn't work for Stu but the metabolic and personalised approach did appear to be.
Travelling to another country for treatment has lots of layers to it. Travelling with my husband with brain cancer who is affected by the position of the tumour was tricky and required a lot of planning. And that is without the added layer of covid restrictions and costs associated with testing. Long queues at the airport, the luggage and the cabin air pressure were all concerns for us. It was much easier for us to travel with someone else to help. Here is some useful info for the steps we took when arranging travel to Tubingen.
London Heathrow to Stuttgart with British Airways and Eurowings
Transfer and taxis:
We booked taxis through a company called Taxi Maxi. You can whatsapp them prior to your arrival, it costs less than an airport taxi. The number is +49 176 20512645. The guy we communicated with who could speak english is called Saki.
Alternatively Hotel Krone organised taxi's for us too though it was a little more expensive.
At the time we couldn't find an insurance company that would give us a policy so we took our UK Global Health Insurance Cards with us which we unfortunately had to use on our second trip. You can find the application form here. We have been told about a great insurance company called Insurance With that specialise in insurance for cancer patients, here is their website.
Hotel Krone - they offer a discount for Cegat patients which you can ask for when you email for the booking. Buffet breakfast was included.
Address HOTEL KRONE TÜBINGEN
Stagl-Schlagenhauff GmbH & Co KG
Uhlandstrasse 1 | 72072 Tübingen
Tel: +49 7071 1331-0
Email to book. No deposit required you pay when you leave. We had two different types of rooms, one was a family room and the other room had a little kitchenette and easier access. I would request the room with the kitchenette and easy access via the lift again.
We didn't speak any German so we used the google translate app when out for dinner
We ate at the hotel restaurant Ludwigs as well as getting room service. We found a beautiful italian restaurant that Stu loved called Al Dente and there are healthy takeaways on Muhlstrabe.
Getting to Cegat:
There is a bus that you can catch from the bridge right by the hotel but we used Taxi Maxi each time. The cost was approximately 12 euros.
At the time of publishing this I don't know the covid rules. When we travelled to Tubingen we had to show our covid passports (download from your NHS app) without the need for a negative covid test result prior to travelling but we did need to do covid tests to travel back which were available from Cegat and we also had to order day 2 tests for when we got home. We ordered these from Randox using a discount code from British Airways.