Glioblastoma (GBM) Specific Resources
There are a few things I believe are crucial to consider early in a GBM diagnosis. Every journey is different, and there is ongoing debate within the GBM community about the impact of some of these approaches (a vaccine and diet), but they have played a meaningful role in my husband’s health and quality of life. As you scroll down, you will see more resources, such as a GBM AI tool, top cancer treatment centers for GBM, and social media groups for community and support.
Vaccines
Many GBM patients explore options such as peptide vaccines (CeGAT/MVZ Tubingen) and dendritic cell therapies (IOZK) that are offered internationally. If it’s within reach, these are worth considering early in your journey. CeGAT requires viable tumor tissue, while IOZK does not, making it a strong option for those with inoperable GBM.
We had both paths in place for Jon, and after his resection last December, we were able to move forward with CeGAT.
To learn more, click Personalized Treatments.
Keto Diet
First, diet. We made changes to my husband’s nutrition within a week of starting radiation, and I believe it was one of the most important decisions we made. He was only on a small dose of dexamethasone and was completely off of it five weeks after his craniotomy. For him, focusing on an anti-inflammatory approach and supporting ketone use for energy rather than relying primarily on glucose made a significant difference. He returned to full-time work and has been able to manage life with a strong sense of normalcy.
If you, like me, need guidance in this area, I’ve found a wonderful resource created by a woman whose husband was diagnosed with GBM as well. Her website, Stem and Spoon, grew out of their personal journey navigating glioblastoma and exploring a ketogenic, whole-food approach alongside conventional care. It offers practical recipes, meal ideas, and approachable guidance for those interested in supporting metabolic health through nutrition.
What I especially appreciate is that it comes from lived experience, while also acknowledging emerging research around ketogenic approaches in GBM. It may be a helpful starting point if you are exploring dietary support and want something practical, hopeful, and easy to begin with.
GBM Podcast: Brainy Blonde
Brainy Blonde Podcast is a hopeful and empowering podcast hosted by Rebecca Devine, a long-term GBM survivor, where she shares survivor stories, interviews leading experts, and explores emerging ideas in brain cancer treatment, wellness, and resilience.
Through conversations on topics like immunotherapy, metabolic health, and life beyond diagnosis, the podcast offers practical insights and encouragement for patients, caregivers, and anyone seeking hope while navigating GBM. It is a thoughtful resource that blends lived experience, expert guidance, and the belief that there can be options beyond the standard path.
Rebecca’s story was shared with me during the first week of my husband’s diagnosis, and it was one of the most hopeful things I had to hold onto in those early days. Hearing the story of a long-term survivor and learning about the peptide vaccine, as well as the approaches she used along the way, gave me perspective and hope when I needed it most. I hope that it blesses and encourages you in the same way it did me.
Navigating GBM: Trusted Resources, Leading Centers, and Treatment Options
Ember Health (GBM AI Tool)
Overview
Ember Health is an AI-powered precision oncology platform focused specifically on helping cancer patients—especially those with complex diagnoses like GBM—identify personalized treatment options and clinical trials.
What They Offer
AI-driven treatment and clinical trial matching
Analysis of tumor data, biomarkers, and medical records
Personalized recommendations for cutting-edge therapies (including immunotherapy)
Key Value:
Helps GBM patients uncover options beyond standard-of-care, which is critical in a fast-moving and aggressive disease
Best Use
Early after diagnosis OR at recurrence
When exploring clinical trials + experimental therapies
Roon: GBM Expert Platform
Overview
Roon is a medical education and support platform designed specifically for patients and caregivers navigating complex diseases like GBM. It brings together top doctors, researchers, patients, and caregivers into one place.
What They Offer
Expert-led video content explaining GBM treatments
Guidance on what to expect at each stage
Practical advice (questions to ask doctors, treatment decisions, caregiving)
Emotional + community support
Key Differentiator:
Built to replace confusing internet searches with trusted, expert-driven guidance
Why It Matters
GBM is complex and overwhelming—Roon simplifies it into clear, understandable steps
Top GBM Centers in the U.S.
Beyond Mayo, if you are in MN
MD Anderson Cancer Center (Texas)
Often ranked #1 in cancer care in the U.S.
One of the largest GBM clinical trial programs
Strong in personalized/molecular therapies
A top-tier U.S. cancer center (Top ~3–5 overall)
Part of the Dana-Farber Brigham Cancer Center
A leader in neuro-oncology research and clinical trials
It’s especially strong in glioblastoma (GBM) because of Clinical Trials Leadership
Runs many GBM trials, including cutting-edge immunotherapy and targeted therapies
Led innovative multi-arm GBM trials (like INSIGhT) to speed up finding effective treatments
Memorial Sloan Kettering Cancer Center
Elite cancer-only hospital
Advanced molecular profiling + experimental therapies
Duke University Brain Tumor Center
Historic leader in GBM research
High patient volume + major research funding
Referral Henry Seth Friedman - the best there!
One of the largest brain tumor programs in the U.S.
Multidisciplinary team + advanced surgical techniques
Well-known Integrative Cancer Centers
Block Center for Integrative Cancer Treatment
One of the more medically grounded integrative centers
Combines conventional oncology + lifestyle + supplements
Osher Center for Integrative Medicine UCSF
Academic (this is important)
Focuses on evidence-based integrative care alongside standard treatment
MD Anderson Integrative Medicine Center
Inside a top cancer hospital
Offers acupuncture, nutrition, mind-body therapies in addition to standard care
🧠 Brain Tumor Network (BTN)
Overview
The Brain Tumor Network (BTN) is a nonprofit organization offering free, personalized navigation services to patients and families facing a brain tumor diagnosis. Their mission is to help individuals understand their diagnosis, explore treatment options, and feel supported every step of the way.
What They Offer
BTN provides one-on-one support through dedicated patient navigators (nurses and social workers) who guide you through the entire journey:
Understanding your diagnosis in clear, simple language
Personalized clinical trial matching based on your tumor and biomarkers
Second opinion coordination with top specialists
Medical record organization and transfer
Treatment education and decision support
Emotional and caregiver support
Help finding financial assistance and resources
Their support is:
Completely free
Unbiased (not tied to hospitals or pharma)
Available nationwide in the U.S.
How It Works
You are matched with a dedicated navigator who learns your story
They help you organize information, ask the right questions, and explore options
They stay with you throughout your journey—not just one visit
Think of them as: “A guide walking alongside you through diagnosis, treatment decisions, and beyond.”
Why This Resource Is So Valuable
Helps reduce overwhelm during a complex diagnosis
Provides clarity without replacing your medical team
Connects you to clinical trials and top specialists you might not find on your own
Offers both clinical insight and emotional support
Contact Information
📍 Ponte Vedra Beach, Florida
📞 (844) 286-6110
GBM Facebook Support Groups
Overview
Facebook groups are one of the most active and real-time support systems for GBM patients and caregivers. They provide shared experiences, treatment insights, and encouragement.
“Glioblastoma - GBM SURVIVORS TO THRIVERS!”
What It Offers
Community of long-term survivors and caregivers
Focus on hope, encouragement, and proactive treatment approaches
Real-world experiences with:
Immunotherapy
Clinical trials
Integrative treatments
Community Insight:
Many patients report that these groups provide practical guidance and emotional support, not always found in clinical settings
“Multi-peptide vaccines and immunotherapy for GBM (including CeGAT and IOZK)”
What It Offers
Highly specific focus on:
Peptide vaccines (CeGAT)
Dendritic therapies (IOZK)
Discussions around Germany-based immunotherapy options
Patient-shared experiences with advanced treatments
Best For:
Patients actively researching personalized immunotherapy pathways
