Ok, so I haven’t updated for a while which isn’t ideal as I like to try and share what I’ve been up to lately. My shyness gets the better of me sometimes as well as that voice in my head that constantly says I’m never good enough and I don’t deserve anything good to happen so why am I still doing well when others have tried their very best and they are no longer around. I know that I like to push things and think outside the box with every little thing that I try to be happy and to continue to keep the cancer beast away while controlling the epilepsy, but despite feeling very content I feel there is still something missing. Other days I feel deliriously happy for no reason, its just cool being alive and you realise what a gift that is, just feels like a selfish thought at times but keeps me sane.
I’ve lost a lot of friends to brain cancer recently and it makes me feel numb because the sad fact is that I am getting used to hearing sad news. Personally I have countless backup plans of novel approaches I have been researching that compliment metabolic approaches to managing this disease should the worst ever happen in future…ever the optimist eh? 😉
I am well aware of the effect of different emotional states on physiological systems so keeping my thoughts and feelings in check is something I definitely prioritise. It is of course partly why the placebo effect exists and why there is even a science dedicated to how our emotional state changes our biology. I don’t get stressed, eustress yes but not distress.
|How emotions are mapped in the body.
“When under stress, cells of the immune system are unable to respond to hormonal control, and consequently, produce levels of inflammation that promote disease. Because inflammation plays a role in many diseases such as cardiovascular, asthma and autoimmune disorders, this model suggests why stress impacts them as well.” https://www.sciencedaily.com/releases/2012/04/120402162546.htm
|Eustress and distress- adapted versions of the Yerkes–Dodson curve for a difficult task https://www.researchgate.net/figure/236527629_fig3_Figure-3-Alternative-Presentation-of-Yerkes-Dodson-Curve-for-Difficult-Tasks-direction|
There is still no detectable sign of cancer on MR Spectroscopy but I believe this is a disease that needs to be managed indefinitely. I am often too fearful to completely relax, but at the same time being proactive brings me comfort.
This actually reminds me that I need to try and get hold of Innovate Pharmaceuticals to see if they can answer a few queries about their ‘world’s first’ truly soluble liquid aspirin product which has incredibly promising applications for brain cancer treatment. I made a series of videos related to this on my Youtube channel so I could teach myself a bit more and share what I have learned. It is proposed that this specific product will be fast tracked into clinical trials as the safety profile is well established and preliminary data is so compelling.
I mentioned this in my second video on the subject here (2/3):
More recently I have been working on a few little projects since my last post, some have been more successful than others. I must admit I feel pretty frustrated at the lack of progress I am experiencing relating to my Research Project at university. I am focusing on a complex area of course with many differing opinions so it was never going to be straightforward but I am determined to succeed. It will require a lot of patience and some degree of persistence to push this through I imagine. I submitted my proposal at the start of this academic year and things have been progressing even if it has been stagnant at times. The research involves combinations of ketone esters and different mood stabilising drugs tested on glioblastoma cell lines in vitro.
|beta-Hydroxybutyric acid. https://en.wikipedia.org/wiki/Beta-Hydroxybutyric_acid|
|Mood stabilising drugs can act as HDAC inhibitors.
Synergistic benefits with the ketogenic diet have yet to be explored to my knowledge.
(Left) the inhibition of histone deacetylases (hDACs) causes both transcriptional
and non-transcriptional effects, leading to profound alterations in cell homeostasis. Middle: the re-acetylation of histones upon hDAC inhibition stimulates gene transcription. (Right) As a result of hDAC inhibition, NKG2D ligands (NKG2DLs) such as MhC class I-related chain A and B (MICA/B) or uL16-binding proteins (uLBPs) are upregulated, rendering glioblastoma multiforme (GBM) susceptible to recognition and lysis by natural killer (NK) cells.
The whole point about being back at university is so that I can do my own research to add to the metabolic jigsaw of these approaches. I feel as though I need to contribute by having my own research paper published on this to spread the word about my ideas and findings from the many theories I have that make logical sense based on what we already know and understand. My brain never shuts up, its constantly thinking and trying to solve problems. I’m a problem solver and always have been, obstacles are to be overcome, they are no dead ends. If I don’t know something I will make sure I know it and I’m not afraid to admit ignorance about even the most basic subjects. I genuinely believe that true intelligence is realising how stupid you are.
Speaking of problem solving, I am experiencing a certain amount of trepidation as we come closer to the date of the Metabolic Therapeutics Conference I have been invited to speak at in February. I feel truly humbled to be doing this and part of me thinks I don’t deserve to be there when there are so many people speaking who I have admired greatly and have inspired me to experiment with their work and ideas on my personalised path to managing my disease and the epilepsy I acquired as a result from a messy brain haemorrhage.
My talk will be titled- ‘Beyond Ketosis: Managing Anaplastic Astrocytoma and Brain Tumour Related Epilepsy with Metabolic Therapies.’
A bit of a mouthful, but I feel it describes my story well in a scientific way. Difficult to be concise with complicated subjects. I am a little anxious I must admit. I seriously need to get over this shyness, but it comes from a feeling of wanting to be a perfectionist and that nothing I do will ever be good enough. This is both a strength and a weakness as it motivates me to ‘push the envelope’ and see what novel approaches to the ketogenic diet I can come up with to optimise this approach for my personal requirements.
Biochemical individuality (more specifically nutritional individuality) is very important I feel, its just a shame I can’t afford all of the lab tests I wish I could have to test a few more theories. I will always take calculate risks of course, nothing crazy. I was skeptical of the ketogenic diet from day 1 and the initial idea was to manage the epilepsy better as the medication wasn’t working well and my quality of life was suffering. Thankfully my version of the diet worked well for me, I don’t know if it will work for others but I do believe some aspects of it might when you look closer at brain cancer metabolism and human physiology.
On a completely separate note (well, not entirely), I have had some frustrations with exercise once more as the work has piled up. I get into nice routines where I start to get fitter but then my seizure threshold lowers as I progress. Hard to tell whether its a nutrition issue, sleep, or work load at university, but I’ll get the answer soon I’m sure. Because the epilepsy was initially caused by my brain haemorrhage it can even be more complicated than ‘tradional’ brain tumour related epilepsy. Mine is a complex type of ‘reflex epilepsy’ caused by damaged nerves that will never fully heal. I adopt the plaster over a wound approach using diet, supplements, maintaining stable emotions and getting good quality sleep.
Being able to run now is a welcome progression so I can’t get too dispirited about this. Yes, it is quite a conundrum and something I need to play around with to work out the most suitable approach but I’ll find a way as I always do, I’m just keen to not make mistakes of forcing myself to do it at innapropriate times (for example after sunset, which is quite early at this time of year).
I have some localised brain damage that runs quite deep accompanied by haemocidirin from the brain haemorrhage resulting from what was a very vascular brain tumour. When blood rushes to the area too quickly or the internal environment changes by any other means I can get increased seizure activity. I have learned how to manage this effectively but at times this can be a tricky balancing act.
To complicate matters further my operation to remove most of the tumour involved cutting through tissues and bone in line with the temporomandibular joint (TMJ). This means the area is still fairly sensitive 3 1/2 years on. There are however unexpected benefits from this in terms of understanding seizure triggers and its great for understanding physiology. 😉 Silver linings…
Moving on… I had the pleasure of attending an event with Yes to Life a few weeks ago which was pretty special as I got to meet Patricia Daly and Travis Cristofferson whom I have tremendous respect for. If you haven’t read their excellent books you really should.
I am greatly encouraged that I was able to signpost the event to some of my friends at university who are all studying nutrition. We are starting to gather some real momentum to educate other students and staff about ketosis and the many applications of metabolic therapies. Unfortunately students on my particular course (Human and Medical Science) are not as enthusiastic as we don’t tend to even cover nutrition in sufficient context. We skim over nutrigenomics and metabolic biochemistry, it is far from comprehensive and the foundations are based on some flawed data with very little coverage of fatty acid metabolism. We are even still being taught by some that the brain can only use glucose for energy which is certainly not true. Energy from fatty acids actually acts as a far more efficient fuel source for the brain, heart, and other organs and they thrive on it.
I am delighted to announce that my friend Isabella and I have set up a Ketogenic Diet Society at my university to discuss the mechanisms, history, and applications of the diet and to dispell a few persistent myths relating to saturated fat, cholesterol, red meat and any other questionable topics that pop up from time to time when discussing nutrition. Isabella is very knowledgable and has started to shake things up on her course by provoking further thought to challenge outdated information that is still being taught. This is no easy feat as I realised last year so as a result I have adapted my approach by engaging in respectful, quite and considered conversations with others who have differing views, even if they speak in a provocative tone. Your argument is stronger if you remain calm and lay out all the evidence.
With the society I am very keen to promote real food in the eating areas at university. Junk food is very convenient, students and lecturers are some of the unhealthiest people I have known with only a few rare exceptions. I may sound as though I am bashing the university, but it has a number of bonuses. For a start, it is the place where I first learned about the ketogenic diet before my diagnosis. Admittedly they appear to have regressed somewhat with the teaching, but there is no reason why we can’t go back to move forward. I would also say that the university allows people to speak out and have a voice, being able to set up a ketogenic diet society and have these conversations is a great thing.
Overall despite my perhaps overly introspective thoughts on life, the universe and everything in it, I feel reasonably pleased with how things are going and I feel content, satisfied with my lot.
I have recently focused more attention on researching mood stabilising drugs as an adjunct treatment for brain cancer with a secondary interest of fasting with ketogenic amino acids. I have been playing around with leucine and lysine which are strictly ketogenic. If we can structure appropriate, considered protocols for these agents and manipulation of amino acids we could see some very interesting results. The promise of mood stabilising drugs for brain cancer management (significantly improved survival) is nothing new but it is still something that is under-utilised and the benefits are underappreciated. You can’t make much money from these of course.
|Ketogenic and glycogenic amino acids. Some are both of course.
Going back to the importance of the amino acid profile of ketogenic diets, this reminds me of the ‘hyperketogenic diet’ approach proposed by Dr. Heinz Reinwald. I believe this could have even greater relevance for pancreatic cancer, whereby protein requirements would likely need to be reduced even further so to make up the deficit amino acids that are not providing energy for the tumour to grow would be supplemented. I believe he also uses Bravo yoghurts to support gut health, which is critical for immune system support and overall healthy functioning. Keeping those trillions of bacteria in the gut happy is always worth prioritising. I would need to look into this more but it appears to make sense. I’m obviously going to be skeptical of anything at first before I know everything about it and then I will probably remain skeptical until I see something that truly amazes me but its certainly very interesting.
Bravo yoghurt- https://www.bravo-europe.com
Details of the ‘hyperketogenic diet’- I wouldn’t normally share articles from other blogs, but the background is interesting. Always look into information written about in articles very stringently. This definitely provokes thought however.- https://bisforbananascisforcancer.wordpress.com/2014/01/23/fulda-conference-4-master-amino-acid-pattern-map-and-the-hyper-ketogenic-diet-in-cancer-and-epilepsy-dr-heinz-reinwald/#more-2358
Interestingly I have often suspected that in the early stages of my ketogenic approach I may have benefited greatly from being on such high doses of two anti-epileptic drugs- Sodium Valproate (Epilim) and Levetiracetam (Keppra). As well as being established drugs that have proven efficacy, these drugs are the most commonly prescribed for brain tumour related epilepsy largely due to the clear survival benefits. Incredibly, while this is clear, it is not really communicated or even understood by most neurologists I contacted at the time. They also did not understand all of the micronutrient deficiencies caused by continuous use of these drugs that can be easily remedied through supplementation of certain nutrients.
I have written about this previously so I won’t go over it too much but ironically many of these micronutrients are actually anticonvulsive so supplementation to lessen the inevitable side effects of the drug should be standard procedure in my opinion. It is important to note that Epilim and Keppra are mood stabilising drugs because there is a clear pattern that emerges when you take a closer look at the potent anti cancer benefits of this class of drugs and their mechanisms of action in different types of brain cancer and neurodegenerative disease.