@Johnny1982I’m sorry to hear about your wife’s diagnosis but it’s good to know she’s a fighter.
I don’t have medical qualifications or a science background. You said your wife was open to possibilities. This is not advice. I’m just sharing information I’d investigate for a relative or friend of mine if conventional options hadn’t worked, with an aim to present to the treating physician (if I thought there was something in it). It’s difficult for a physician to keep abreast of everything and some are open to a collaborative approach, even if it’s identifying an expert to reach out to.
On the topic of cancer vaccines you asked about, I don’t know if your wife has come across a dendritic cell vaccine? It’s one of the therapies listed here, not as recommendations, but as information sharing:
https://brainstrust.org.uk/glioblastoma/gbm-treatment-trials/
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I’ve been listening to interviews with an oncologist who has an international reputation. I suspect he was a key driver of immunotherapy in cancer (Keytruda was first used in melanoma and he seems to know immunology - an important discovery on T cells and immunity is attributed to him.) He said in one interview he uses low dose Naltrexone with alpha lipoic acid (has a synergy) as an adjunct for some of his patients. There are a few case studies in pancreatic cancer and it’s one of those repurposed drugs listed on the site above.
I only recently came across oncologist Patrick Soon Shiong. I don’t know much about him but Anktiva is FDA approved for bladder cancer. He’d like to see a cross-discipline approach between oncology and immunology, which sounds sensible to me. He stresses the importance of reducing inflammation and that NK cell activity is crucial. My layperson’s view of the MOA of this new drug for glioblastoma is to boost IL-15 to supercharge activity of NK cells. I don’t know the results of phase 1 or where you’re based but this is recruiting for phase 2:
https://clinicaltrials.gov/search?term=NCT06061809
A couple of years ago, I was looking around for a friend’s partner who was diagnosed with lung cancer and not doing well on conventional therapy. I came across an interesting article and IMO high level debate going on in the comment section. I wrote a comment and got a reply. Before I read this, I had no idea there was a metabolic vs somatic theory of cancer. The responder told me that if one types in "cancer metabolic" into Pubmed it lists 145,000 studies on the metabolic approach to cancer. He also mentioned there were cases of long-term survival in brain cancer with poor prognosis on a no carb diet.
I did what the commenter suggested but remembering the importance of being precise, I found around that number of publications on the metabolic theory of and approach to cancer. The Warburg Effect paper is very highly cited:
https://pmc.ncbi.nlm.nih.gov/articles/PMC2140820/t
I found 9 papers on the ketogenic diet for glioblastoma. I only looked briefly but learned of two cases of long-term survival on a low/no carb diet (in combination with other therapies whose impact IMO can’t be ruled out).
Andrew Scarborough is IMO the most well-known. He was first diagnosed in 2013. The ketogenic diet he follows is no carb. His case has been written about in the New Scientist. He says the guidelines have since changed and the molecular characteristics of his cancer are more similar to a glioblastoma. His talk My Brain Tumour Journey is on YT. The first part is confronting but from the 16 min mark he talks about the type of keto diet and other therapies he says worked for him. He’s currently doing research to establish a metabolic phenotype of glioblastoma.
In an interview from 5 years ago, Andrew said his physician was neurosurgeon Mr Kevin O’Neil. Imperial College London has groups studying keto diets (also combined with arginine deprivation) in brain cancer:
https://braintumourresearch.org/pages/centres-of-excellence-imperial-college-london
Anginine therapies (I’m not sure if they’re widely available yet) seem like they could be context-specific, which is why treatment should be personalised. There’s a fair bit of research on glutamine deprivation too but, as Andrew says, a balanced keto diet is rich in glutamine and it’s an essential nutrient for the gut. In the case study referenced in the paper below (ref 15) of a keto diet in a patient with glioblastoma multiforme, the authors are aware of the potential toxicity of glutamine deprivation and used a therapy they say is less toxic. They also used hyperbaric oxygen therapy, which Andrew mentioned:
https://www.nature.com/articles/s42003-019-0455-x
Andrew co-authored a paper with Thomas Seyfried, an American professor of biology, genetics, and biochemistry at Boston College but I couldn’t find one on brain cancer. Seyfried has published extensively on the metabolic theory of cancer and ketogenic diets combined with a drug. It sounds like there’s a protocol.
Andrew’s talk was interesting to me because he knows about the gut-brain axis (Gershon’s book The Second Brain was on my daughter’s friend’s reading list for students of neuroscience; Borody had funding 15 years ago for fecal transplant for Parkinson’s and there have been some promising results for Alzheimer's). There’s also a fair number of publications showing interest in whether manipulating the gut microbiome can create an environment unfavourable to cancer.
Andrew talks about the importance of short chain fatty acids - SCFAs. (I mentioned in one post an interview with top Australian immunologist Robert Clancy who talked about SCFAs’ effect on T cells (Tregs). When I first started out, I thought Il-6 was a ‘bad cytokine’ but a friend who works for a pharmaceutical company told me that’s not the case. I now think something can be good or bad depending on the context - the immune system is highly complex (Dr. Soon Shiong likens it to quantum entanglement.)
This study is on SCFAs and inflammation:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4275385/
“It appears that SCFAs selectively promote only the right types of T cells required to handle specific immunological conditions.”
This one study found microbiota-derived SCFAs boost NK cell activity:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11242436/
(One study they reference found responders to fecal transplant showed increased CD8+ T cell activation.)
(My husband just reminded me of a video he sent months ago of astrocytes with long arms reaching out and gobbling stuff up they ‘thought’ shouldn’t be there. I believe they can be influenced by SCFAs)
Andrew’s diet sounds very difficult to do. I don’t know if it’s unnecessarily restrictive and low carb would get the same results or if no carb is more effective (It’s something I’d look into). Even with low carb, it can be harmful to suddenly cut down, especially if a person is older, which is why it should be done under proper supervision. Wolfgang Lutz explained where Atkins went wrong. Lutz based his diet on his research of the healthiest populations in Africa (Malhotra’s diet for metabolic health sounds similar.)
I used low carb nutrition for myself and two of my children for autoimmune conditions. The cook book I liked most was Sally Fallon’s Nourishing Traditions. There was a strong anti-inflammatory effect shown by bloodwork and significant weight gain. (My younger daughter’s doctor compared her diet to 60mg steroids.) Younger people tend to respond best but my mother aged 75 at the time stayed with us for a month and when she returned to the UK, happened to have her bloods done and they commented on how much better it was.
A diet is IMO a framework in which to develop a personalized eating plan that ensures adequate calories and nutrients. I’ve found dietary therapy can be effective but it’s also labour intensive and difficult to do without family support. Even then, compliance can be an issue. As you’ll know, everyone is different and people respond differently but there are other options. I do see us entering an era of a more enlightened approach in medicine in general.
I hope some of this may be useful to you and wish you and your wife very best.
(20min delay)