Tuesday 23 July 2019

Current engagements and future projects

I detailed on my Youtube channel what engagements I have been involved with recently and what direction my research will be heading to.

In the video I mention training I am undertaking to learn more about specific laboratory equipment I will be using for some ketogenic focused research related to brain cancer. I also give a brief overview on a few speaking engagements I have been involved in recently, including a visit to parliament with Brain Tumour Research to discuss my personal experiences with ketogenic therapies.


Additionally, there was a press release about the APPG in parliament by Bracknell News, my local newspaper. The link can be found here:

https://www.bracknellnews.co.uk/news/17776161.sunninghill-brain-tumour-campaigner-speaks-parliament-impact-ketogenic-diet-seizures/?fbclid=IwAR0Drbc5gdwUL3zAOQP5gSvws8UBDHt4Wp8I7_WpqJxH17YgG-P7LQqL-fc


It is always a pleasure to share awareness of the potential of these metabolic therapies, particularly as we continue to learn more about their applications and effects. I am excited about furthering my own research in this area to expand on previous research involving high grade gliomas. It is encouraging to see that there will be a clinical trial for both high and low grade gliomas beginning in January 2020 to investigate the therapeutic efficacy of a calorie restricted ketogenic diet on brain tumour patients. I hope to be involved in some way as I have been in contact with the investigators of this trial for a number of years now.

Wednesday 8 May 2019

Light and Shade, love and loss

So much time has passed and so much has happened since my last blog entry.

I've had so much to say in that time, but every time I thought about putting my thoughts into words something just didn't feel right. I have also suffered from a crisis in confidence lately and been questioning myself in many aspects of my life. To say I have encountered challenging times over the past few months has been an understatement, but I'm determined to work my way through it and out the other side.

In terms of my own health, and my latest scan results, they have been exceptional and better than I could have ever imagined. I have now reached the 6 year mark in my journey attempting to out-think this cancer and prevent recurrence. The aim is to die of 'natural causes', after a long life of love, happiness, and countless wonderful memories. That would be incredible to me.

I feel fortunate, and whatever I have been doing could certainly be helping. I say could, because I wonder if we can ever be able to pin any of these aspects down as being definitively useful beyond doubt. What I will say, however, is that symptomatically there is no doubt whatsoever that certain aspects of my approach are making a huge difference.

As I have stated many times before, I have reflex epilepsy as a result of the haemorrhage I suffered from 6 years ago that led to the discovery of my highly vascular malignant brain tumour. Over the years I have been treating this with successfully without medication by applying a therapeutic and balanced omega 3:6 ratio ketogenic diet, magnesium supplementation and crucially supplementation with boswellic acids (in different forms). I say crucially, because initially I understood that for brain cancer boswellic acids, particularly boswellia serrata, can be steroid sparing, even when patients have radiotherapy to the brain. (1) I find that boswellic acids help to increase my seizure threshold considerably if I use them strategically at the right times and at the right amounts. There is a rhythmicity to these symptoms in line with circadian biology and I have noted that meticulously over the years along with a food, mood, sleep and triggers diary.

I have experienced a tremendous loss lately as my Mother passed away from a recurrence of her cancer. It was obviously difficult to take for a number of deep, personal reasons, but also left somewhat of a bitter taste due to the fact there was negligence from medical professionals which contributed significantly to her poor prognosis. If you try to treat any cancer patient at such a late stage it will always be a steep, uphill battle and you have to target multiple fuels and signalling pathways to treat the disease if you are targeting defects in cancer metabolism. We opted to try deuterium depletion strategies, and in retrospect this was a mistake, but the standard of care offered no efficacy at this late stage and this seemed like an interesting option, despite the lack of human data.

The lack of human data for these deuterium depletion strategies is a huge problem though and I recognise that more as I reflect on all my experiences and my research into deuterium depleted water. I was left with so many more questions than answers from our experiences and reading all the n=1 case studies available to me. I was left uninspired and as we progressed there were more and more unanswered questions. We were both experimenting with the water over those few months, but there were so many confounding variables that it would have been impossible to determine what benefit, if any, we were receiving. I had also wondered about the validity and reliable of the tests to measure this (they aren't really independent) and also the fact that it isn't really natural to artificially deplete water of deuterium in the laboratory for us to drink.

Another thing is that I see red flags about anything when people promoting it suggest that its a cure all for everything and that the answer to cancer management could be 'so simple'. You see this a lot in the 'alternative' cancer world, and I get more frustrated and annoyed every time I see anything being expressed this way. It certainly isn't simple, it never is. Everyone I know who has performed the deuterium test for the first time comes out with a very high reading. Why is this? Even if they regularly fast, exercise, get out in the sun, and eat a ketogenic diet it is still high on the first reading. Initial tests after drinking the water suggested that my Mum was effectively depleting levels of deuterium but her cancer was rapidly progressing. Why would this be? Every case I read about in Gabor's book on the subject had patients who succumbed to the disease in the fashion you would expect and you couldn't even claim definitively if the water even slowed down progression of the disease. The theory is sound, and appears to make so much sense, but sometimes you have to ask more questions because mechanisms don't always equal actions. This is the unpalatable truth.

Also notable, was that I had high levels of deuterium in my body according to my test results but I felt better than I had in a long time and my scan results were very good, even some of the scar tissue was beginning to heal, albeit at a very slow rate. This is better than nothing as this was definitely not normal or expected.

There may be something in the deuterium theory of cancer but even then I ask.... is lowering deuterium in the body enough on its own? Also, if drinking the water, its expensive and takes a long time to get to the actual therapeutic doses (weeks and months!), which can be frustrating if you have a disease where you don't actually have much time. If it was as miraculous as it sounds on its own, after all these years we would have heard more about it from doctors, patients, and there would have been clinical trials rather than a small collection of case studies. Some will say it could be because a big pharmaceutical company can't make money out of it, or there are no incentives in terms of profits for medical organisations, or there's no money in anything that could potentially cure disease, but then think about those statements and look on Pubmed and there are countless articles on turmeric, metformin, etc., which have many documented studies with mechanisms of action for some of the most formidable diseases known to man.

The science sounds fantastic and makes perfect sense, but what makes sense doesn't always translate so well to the patient and isn't always so simple. I have also seen supplements and repurposed drugs be incredibly effective for stage 4 cancer and even broccoli sprouts, which some might say to avoid (theoretically) because they are high in deuterium. The high sulforaphane content however, suggests that it would be very wise to include broccoli sprouts in the diet.

What are we to believe? We are still learning about this, and how best to exploit it, so many people think they have 'the answer', but while the deuterium gang think it ties everything in as 'the BIG answer' to everything, maybe in actuality it simply represents another cog rather than the master controller for optimal health. We are still learning and the researchers still need to collect a lot more data from patients to make any of the claims that ae often suggested.

I don't doubt that deuterium plays a significant role in disease progression in some fashion, but I feel we still have a lot more to learn about this. I haven't completely made my mind up yet, even though it may sound like I have. I am open to changing my mind about anything if I have enough evidence to support that view and it is convincing enough. There are claims made, even in scientific papers on deuterium depleted water, that are not supported with the data from which those claims can be made.- for example, in this paper a claim is made that 'Deuterium depleted water delays tumour progression in mice, dogs, cats and humans.', but although I can find a lot of fascinating and compelling evidence of biophysiochemical mechanisms to support the theory,  the clinical trials and in vivo observations aren't as compelling as I had initially thought when I first read them. As I say, I think there is definitely something in it, but we need to dig a lot deeper to understand how we can best take advantage of its effect and we need to somehow remove all confounding variables.




1. Kirste, S., Treier, M., Wehrle, S. J., Becker, G., Abdel‐Tawab, M., Gerbeth, K., ... & Momm, F. (2011). Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors: A prospective, randomized, placebo‐controlled, double‐blind pilot trial. Cancer117(16), 3788-3795.