Useful links & the evidence behind my choices

These are the contacts and published studies behind the treatments I mention above. I'm sharing them only as a starting point for your own research and conversations with your doctors. As noted above, I have no commercial affiliation with any clinician, company, or product listed here.

Studies

Study · Peptide vaccine in GBM
Real-world results of the CeGaT personalised peptide vaccine
Latzer et al., Nature Communications (2024). A retrospective look at 173 GBM patients given the personalised vaccine; median overall survival from diagnosis of 31.9 months, with longer survival in those who mounted a strong immune response.
Study · Optune in newly diagnosed GBM
The EF-14 trial of Tumour Treating Fields (Optune)
Stupp et al., JAMA (2017). The phase 3 trial in newly diagnosed GBM that showed adding Optune to temozolomide improved both progression-free and overall survival.
Study · Lomustine + temozolomide
The CeTeG/NOA-09 German trial
Herrlinger et al., The Lancet (2019). The phase 3 trial suggesting that adding lomustine to temozolomide may improve survival in newly diagnosed GBM with a methylated MGMT promoter — the basis for the combination I was recommended for three cycles. Note: a small trial, and its authors urge caution.

Contacts

Contact · Optune & the CeGaT vaccine
Dr. Matt Williams — Consultant Clinical Oncologist, London
Runs the UK's largest Optune clinic, co-leads the UK Optune support group, and has links with the German immunotherapy groups (CeGaT/IOZK). A useful first point of contact for both Optune and the peptide vaccine. Profile & booking via Top Doctors; he also chairs the brain tumour MDT at The London Clinic.
Contact · Personalised peptide vaccine
CeGaT / CeCaVa — Tübingen, Germany
The lab behind the personalised neoantigen peptide vaccine I receive. This page (CancerNeo) explains how they analyse a tumour to design the vaccine; use the "Contact" link on their site to reach the team. Many patients find it easier to involve an oncologist already familiar with CeGaT.

Further reading

Further reading · Understanding the basics
HINO — Horizons in Neuro-Oncology
A UK initiative bringing together clinicians, researchers, patients, and carers to explain brain tumour concepts and treatment options in clear, relatively simple language — helpful when you're trying to make sense of the terms and choices early on. It's UK-based, but much of the background reading applies anywhere.
Further reading · Stories of hope
Radical Remission
Some of the stories of people who have thrived after a cancer diagnosis, gathered here, gave me a great deal of hope when I needed it most.
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.