Dad with GBM
My dad was diagnosed with GBM in September 2023, unmethylated wild type on his left temporal lobe (5cm when found).
The doctors gave us 9-12 months.
Today I am sat here in hospital almost three years later- the doctors are giving us 2-3 days at most. His breathing has already started changing.
I would not wish this disease on anyone.
He went into hospital 7th September 2023 because he had difficulty finding his words. He thought he was having a stroke. My siblings and I were all in London at the time and woke up to a text from my mum that my dad was taken into hospital at 3am and is undergoing exams for his symptoms.
Eventually they told us they found a tumour and while our world shattered we were hopeful it would be benign. We did our research on brain tumours- read about GBM and were like no way will it be that, 68 year old male, healthy, never smoked in his life, worked out over 5 times a week. Zero chance, cancer can’t happen on such healthy bodies.
Then came the surgery. Then the pathology. Glioblastoma. Our world shattered again.
The worst diagnosis we could ever imagine. At the moment we all mourned our dad, even though he was alive and communicating, just knowing the stats, seeing parts of our dad change as a part of his brain was removed, we knew life will never be the same again.
Fast forward three years (in two weeks) and we are where we are. I will write a post at some point about what we did, cause we attacked this with everything (KETO, supplements, peptide vaccine) and I want to share our full journey. Some things may have helped, some may have done absolutely nothing, and I don’t want to pretend that we can know which was which, from one person’s experience.
But this post is about something else. As I sit here in hospital and look at my dad suffering, all I can think about is why?
It baffles me that we can send man to the moon, we have artificial intelligence reaching almost above human intelligence and we don’t know what causes GBM and why. How does it happen to healthy people?
What is the common denominator here we are missing? I keep wondering whether, across thousands of patients, there are patterns we haven’t understood yet. Was there something about their immune systems? Their occupations? Environmental exposures? Previous illnesses? Genetics? Something completely unexpected?
So I wanted to start this thread to understand everyone’s journey and what was the lifestyle of their loved one, are there any common patterns that can help us understand this disease further, as science works best with data and observations.
This obviously isn’t a scientific study and it cannot tell us what causes GBM. But perhaps it can help us see what questions are worth asking.
I wish the worst on this disease and I hope we find a way to cure it like other types of cancer so that people’s world don’t shatter in the future when they hear the word GBM, and understand why it happened rather than hearing from the doctors “we don’t know”.
If you wish to share, you can copy paste the below and fill it in for your case (I have filled it out for my dad).
History
Gender: Male
Age at diagnosis: 68
Weight: Lean/normal
Smoker/Former smoker: No
Alcohol consumption: 3-5 glasses a week
Diet: Mediterranean
Exercise: 5-7 times a week
Sleep patterns: Snoring and sleep apnea (severe)
Family history of brain tumours: NA
Family history of cancer: NA
Long term health conditions: Hashimoto and eczema
Allergies: Bee sting, oral contrast (CT scans)
Covid vaccine: 4 astrazenica
Other serious illnesses/Viral infections: Hep B, Covid
Head trauma: No
Long term medicines: topical steroids for his eczema
Surgery: deviated septum
Blood group: need to find
Major life changes: death of his mother 2023 (5 month pre diagnosis)
Oral health: Dental amalgam (filling)
Gut health: likely some disbiosis
Chemical exposure: some chemical exposure through textile trading
Diagnosis
Tumour: Left temporal lobe, approximately 5 cm
IDH: Wild type
MGMT: Unmethylated