At the age of 27 I was diagnosed with a highly vascular, high-grade Anaplastic Astrocytoma brain tumour after a brain haemorrhage on a busy train. I underwent surgery to remove most of the tumour, followed by chemotherapy and radiotherapy in an attempt to ‘zap’ the rest of the remaining cells. I decided to abandon my chemoradiotherapy after realising this wasn’t working for me and that the area of concern on scans still looked suspicious and was picking up high signalling activity.
My decision was further validated when I realised from the histopathology report that my tumour would not be chemosensitive (IDH1 wild type, unmethylated for MGMT, loss of 1p but not 19q). A mixed bag with the 19q, but it didn’t appear so promising overall. Around this time I was transitioning onto a ketogenic diet but to help manage the debilitating epilepsy I had acquired from all the brain damage I had sustained (which was quite significant). Initially the 4:1 Ketogenic Diet I had attempted actually made me feel worse and I found I was incredibly sensitive to foods I had no problems with before going on the diet. I was informed that the diet was supposed to be anti-inflammatory but I had experienced these horrible flare ups whenever I tried common ‘ketogenic’ foods- avocado, broccoli, coconut oil, olive oil, cheese etc.
This really confused me and I didn’t want to give up so I started to write down my symptoms in a diary to look for any patterns. This wasn’t as simple as it might sound, I was still on the maximum dose of two different anti-epileptic drugs and I was still having horrible seizures. The drugs and seizures were making me severely depressed and it felt too dangerous to leave the house on my own. My mother had recently been diagnosed with oesophageal cancer after taking a drug for osteoporosis that damaged the oesophageal lining, causing a malignancy. We had this confirmed by a number of researchers and doctors and the anger that raged inside me probably didn’t help as my depression worsened and the diet appeared to be failing me, whatever I tried. There was no cancer, let alone any disease in my family before I was diagnosed, so ‘why me?’ I thought. At the time I was a personal trainer studying for a masters degree in Nutritional Therapy and scoffed at the idea of the ketogenic diet before reluctantly trying it myself post diagnosis. It was new at the time and I believed in an organic plant based ‘rainbow’ diet at the time. That was the cool thing, and we were told to reduce animal proteins to ‘no more than a palm size’ a few times a week.
One day, when I was at my lowest after suffering horrific migraines after eating avocado I decided I was going to give up completely on the diet, but something happened. I woke up late one day, forgot to take my meds, had some mackerel, and just sat looking out the window. A few hours past and I noticed I didn’t have any flare-ups. I looked back at my diary where I had a scale of how bad my symptoms were and I noticed patterns after eating foods high in salicylates, so I made a radical decision to cut out all plant foods and dairy and to see what would happen. It worked and it was immediately pretty miraculous! Later I found I actually did just fine adding back the unpasteurised high fat dairy on an occasional basis and realised the problem was actually the plants. This was very difficult to accept because I always though that plants were necessary for a healthy gut microbiome, but I realised this wasn’t the case at all after reading ‘Deep Nutrition’ and ‘Primal Body, Primal Mind’.
That last book actually had the biggest influence on me and made the most sense. It introduced me to the idea of the ‘Paleolithic Ketogenic Diet’ before I even knew it was a ‘thing’ and before I knew anything about the work of Paleomedicina, who actually use the diet as a treatment protocol for patients with a number of conditions, including cancer. I was concerned about eating just oily fish, eggs, and meat, so I decided to add organ meats (brain, pancreas, fatty lamb hearts, liver), bone marrow, various edible insects, etc. all from my local butcher.
The meat is all grass fed and I know the farm where it comes from. Once I had transitioned from a standard ketogenic diet that was failing me to a carnivorous ketogenic diet I noticed my depression had been lifted, I gradually came off all my drugs, I no longer had any seizures (seldomly, only if I slipped up on the diet or encountered other triggers), and even my scans started to show improvement.
After I combined the diet with periods of fasting, long walks, a positive mindset, and hyperbaric oxygen therapy, I appear to have achieved complete remission of my cancer when observed via MR Spectroscopy (a type of MRI scan that looks at the bioenergetics of the tumour site). At this time I was also taking exogenous ketones (not with caffeine or sweeteners as these were triggers for me), as this stopped me having seizure activity from exercise- I have ‘reflex epilepsy’- there is always a known cause and the major one is diet.
This whole time I had been following Professor Thomas Seyfried’s ‘Glucose Ketone Index’ as a way to monitor efficacy of the ketogenic diet for brain cancer management. My type of epilepsy is incredibly sensitive, quite different to most brain cancer patients, and interestingly I noticed that I have a clear therapeutic zone for optimal seizure activity control on the diet (typically within the range of 3-5mmol/l). The other thing I noticed is that I am clearly metabolically quite flexible, and as an individual I appear to have naturally high ketones (relatively speaking) without much effort. A focus on quality sleep, spending time in nature, and my breathing techniques probably help that, as well as the fact I am quite lean. Stress raises blood glucose and I became very aware of that the hard way, but I successfully adapted strategies to deal with that.
My life focus has now shifted entirely, I am a cancer researcher specialising in brain cancer and I am in the penultimate year of my studies about to complete my thesis, which I hope to be published if it is deemed good enough. I will be pursuing a PhD soon and aim to study these metabolic therapies in more depth as a researcher in the lab as well as continuing to be a human guinea pig and pushing for more clinical trials with similar approaches. I am now even able to add back some of the offending plant matter back into my diet with no issues, but most days I stick to my purely carnivorous ‘Paleolithic Ketogenic Diet’, as I just feel much better and genuinely thrive with this approach. My scar tissue has even started to heal and I am hoping this continues so that I can better manage the invisible disabilities that still irritate me.
I still don’t believe this approach is a ‘cure’ and I’m not recommending it for everyone, but it has done wonders for me in terms of helping me to get my life back and to help my brain heal. I also believe that if I were to relax my approach that the tumour would come back, or I would at least start having grand mal seizures again, so I won’t be abandoning the diet any time soon! There is a lot to be said for feeling good, and I feel best eating this way. Also, I believe that any anti-cancer diet that mimics a fasted state in this way, that prevents the hypersecretion of insulin and maintains low and stable blood glucose, with a favourable ratio of omega 3 and 6, is a pretty smart idea in my book. It made sense for me personally to do this on a carnivorous way of eating not only because I felt better, but because I understood animal foods could be incredibly nutrient dense, with more bioavailable nutrients compared to plant foods. They are also much easier for me to digest.
I am thankful that more people are sharing their stories because this is still seen as very controversial. People don’t like the idea of cancer patients eating meat (especially red meat!), and fruit and vegetable juicing is still all the rage for some reason I still don’t quite understand.
I hope to encourage people to be more subjective rather than objective, and to always question the prevailing dogma.