A glioblastoma diagnosis introduces you to an unfamiliar world of medical terminology, treatment decisions, molecular markers, clinical trials and scientific research.
This section is intended as a starting point.
You do not need to understand everything at once.
The resources below are organized to help you gradually understand the disease, your own tumor, the available treatment landscape and where to find additional help and support.
Resources
A Practical Strategy for Glioblastoma
A practical roadmap based on what I have learned through my own GBM journey, focused on making informed decisions, acting early, and keeping every possible option open.
01
Start treatment & Chose the best center you can access
Go immediately to an experienced GBM center and begin planning surgery and treatment. Experience and access to advanced treatments can differ significantly between hospitals and countries. Seek out a high-volume, specialized GBM center, even if that means travelling abroad. In Europe, leading centers can be found in countries such as Germany and Switzerland, while the US offers particularly broad access to clinical trials and experimental therapies.
02
Maximize Safe Surgical Removal & Tissue Storage
Aim for the maximum safe resection at an experienced neurosurgical center. The goal is to remove as much visible tumor as possible without causing unacceptable neurological damage. Before surgery, also make sure enough tissue will be preserved for molecular testing, and if available, arrange collection of fresh tissue for organoid or functional drug testing.
03
Follow the Standard of Care
Discuss radiotherapy + temozolomide (Stupp protocol) and, for selected patients, whether lomustine + temozolomide (CeTeG) could be appropriate.
04
Understand your tumor Molecularly
Start with key biomarkers such as MGMT promoter methylation, then consider broader testing with DNA sequencing, RNA sequencing, genome-wide methylation profiling, and relevant molecular or immune markers.
05
Consider Tumor Treating Fields
Investigate TTFields/Optune as part of your treatment strategy.
06
Keep all your Medical Data
Store every MRI, pathology report, molecular result, sequencing file, doctors letters etc... You may need them for second opinions, trials and personalized treatments.
07
Look beyond Standard Treatment Early
Build a multi-layer treatment strategy rather than relying on a single approach. Where appropriate, combine standard treatment with clinical trials, repurposed drugs, metabolic strategies and molecularly targeted therapies to attack the tumor from multiple angles.
08
Match Innovative Treatments to your Tumor
Depending on the molecular profile, investigate options such as personalized vaccines, CAR-T therapies, CAR-NK therapies checkpoint inhibitors, targeted therapies and oncolytic viruses.
09
Prepare Financially
Many promising treatments and tests are not covered by insurance. If needed, start fundraising early rather than waiting until an opportunity appears.
10
Keep reassessing your Strategy
After every scan, treatment milestone or new molecular result, ask: what is the best next move?
Most importantly, you are not the average patient. Statistics describe groups, not your individual outcome. There are always reasons for hope, keep looking for opportunities!
Patient Organizations and Support
Clinical Trials Overview
This is a global database of publicly and privately funded clinical studies. It allows patients to search for ongoing and completed trials by condition, treatment, location and recruitment status. Each listing provides eligibility criteria, study locations and contact details.
Future of Cancer Care Today
FCCT helps cancer patients explore diagnostic and treatment options that extend beyond standard care. Its team provides personalized research, practical playbooks and curated resources to help patients understand their options and have better-informed conversations with their medical team. Support is free for patients.
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