Tuesday 12 April 2016

CTV National News Covers Ketogenic Diet

Hello This is Adam's Dad

First off, as seen on CTV News Adam is doing great! This is truly a miracle and we are humbled and grateful for all of the love and support Adam has received over the past two and a half years.

As word of mouth has gotten out about Adam's success over this time I would get contacted, about once every couple of months, from someone with GBM or other aggressive cancer wanting to know how to do what Adam did. As a parent of a child diagnosed with a terminal cancer I understand intimately the whole gambit of emotions that loved ones feel when a family member or close friend is fighting for their lives. Talking to Adam and others who have reached out to me I appreciate the incredible courage and drive it takes to fight a terminal cancer prognosis. They not only are fighting cancer, but often carry a weight of expectations, that real or not, they don't want to let friends and family down.

What we've done with Adam has been successful, the medical community would refer to his outcome as "anecdotal" evidence that this helps "in this case" and that additional research needs to be done. The challenge with validating Adam's protocol is very complex:

First the ketogenic diet is a serious diet and should be undertaken with the help of a trained dietitian. The problem is that there are very few dietitians trained in ketogenic diet, and most are working strictly with kids that have serious seizure problems. In Calgary in a City of over 1 million there is one. We started the diet without support and by good fortune managed to develop a relationship with her over time.

Second, it is highly unlikely that a proper clinical trial will be done because there is no financial reward to pursue one. Most work done to date has been academic, nothing from industry. Unless this is sponsored by government, insurance providers, or non-profits there is likely going to be little progress. The reality is that these groups tend to funnel funds in small amounts over a large number of academics with the idea of generating large numbers of leads with the idea that industry would pick up the promising ones. This will not happen in the case of a diet.

Third, the diet adjusts a patients metabolism. It goes without saying that many people will have varying responses to a ketogenic diet because metabolism is influenced by lifestyle as well as food. Even the amount of meals and their timing can influence metabolic rates. So the focus can't be on what goes into the diet, but rather what are the measurable outcomes. In the case of cancer focus should be on ketone levels and glucose levels as measured in blood. Adam used the Precision Xtra blood tester commonly used by diabetics. We tied to keep his ketone levels higher than his glucose levels, but what is the right target level? Nobody knows.

Fourth, the diet has shown in multiple pre-clinical trials to enhance the benefits of other treatment protocols. I wouldn't suggest that the diet by itself would cure cancer. For instance, when mice where given radiation and then placed on the diet there was only marginal benefits, but when the mice started the diet first and then got radiation there was significant benefits. The conclusion was that the diet could be a radio-sensitizer. So anyone considering the diet, please thoughtfully discuss it with your oncologist as part of your total treatment protocol. Unfortunately, this may lead to frustration as it is unlikely that they will be supportive. Adam's doctor was very opposed to what we did, but I still made sure to keep her in the loop regardless, over time she's become more open to the idea of the diet's benefits.

So when we agreed to do the CTV News I knew that there would be a flood of inquiries. I wish that there was a great support structure for people to try this, but there isn't. We are pioneers, I will try and help as much as I can and will add posts as time permits. A great site to check out is https://www.charliefoundation.org/ there is also a lot of good recipe sites popping up.

What a can share is HOPE! Adam's prognosis was months and two and a half years later he's living a full and happy life!

http://www.ctvnews.ca/health/scientists-studying-effect-of-ketogenic-diet-on-brain-cancer-1.2853439