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!


Monday, 17 February 2014

A lot has happened since October...

First off we had some hard news shortly after the last post. We had some testing done on Adam's tumor and of the four test done we came up on the wrong side of each. So besides having the worst type of brain cancer he had the worst of the worst. The key finding was that his tumor was negative for the MGMT promoter gene, this means that chemo was going to be less helpful to him, so much so that we decided to opt to not get chemo. In October Adam went to MD Anderson in Houston for a second opinion and consult. They confirmed the diagnosis of glioblastoma multiform (GBM) but didn't have much more to offer besides the chemo & radiation option already available in Calgary and expressed understanding at the decision to forgo chemo but did encourage radiation. They did indicate that there might be other options available if Adam's condition progressed to a palliative state or if primary treatment failed; this is a common thing we would run into over and over again.

A lot of research was done into other treatment options: two clinical trials showed potential a dendritic cell therapy out of Florida and a photo dynamic therapy trial in Wisconsin. Both required his situation to deteriorate further before he would be able to qualify. One of the frustrating things we ran into was the fact that many treatments or trials were not available to him because he's 13 and they aren't approved for pediatrics. This is understandable because GBM is so rare in pediatrics and people planning clinical trials generally seek to avoid outliers, but frustrating none the less.

The decision was made to not have any treatment and focus on keeping Adam as healthy as possible so that if he got into one of the trials mentioned above he would be coming in strong and not beat down from chemo or radiation. Our research led us to start Adam on a diet called the Ketogenic Diet and he started this in mid October. The purpose of the diet is to get Adam into a state called ketosis (where his body is using ketones for the energy of metabolism instead of glucose). Cancer cells need glucose and can't use ketones, and healthy cells can use either, so the goal is that the cancer cells would be starved and this would slow the tumor growth. The diet follows a 4:1 ratio of fat to the combination of carbs and protein (80% fat, 15% protein, and 5% carbs). We were fortunate to find professional medical supervision for Adam's diet. Please if you are reading this blog and are thinking of sharing this strategy keep in mind this is a very serious diet and should be supported with expert help. The Charlie Foundation or your nearest children’s hospital would be a good place to start as the diet is mainly used to treat seizers in children.

With Adam making a major life change and putting in a serious commitment to the diet (totally compliant) we started researching for ways to make the most of his efforts. Two pre-clinical studies showed great potential: a mouse study for GBM using ketogenic diet and radiation and another mouse study showed that ketogenic diet with hyperbaric oxygen (HBOT) showed promise in slowing metastatic cancer growth. Interestingly, there are a number of clinical trials be run with HBOT with radiation. So the idea of combining the three was appealing. While we were working to get all of this in place for Adam, his Aunt Erin suggested that there might be a drug that could help him control his glucose levels and might allow for more freedom in his diet. We emailed this idea to his dietitian who providentially is married to another dietitian that specialises in diabetes; the two of them discussed the various drugs and concluded that the most promising one that wouldn’t mess up the diet was Metformin. We started researching Metformin with GBM and were stunned to discover how many cancer clinical trials were looking at Metformin, and that in preclinical studies it had shown great potential as an anticancer drug. Additional research showed that it was especially synergistic with HBOT as the two counteract each other’s primary side effect while the HBOT increases the permeability of the blood brain barrier thus increasing the odds of the Metformin reaching the tumor. So what started as an idea to help keep glucose levels low later turned in a major part of Adam’s treatment protocol.

On November 12th Adam had an MRI that show “no significant progression” of the tumor. As this was the first MRI since Adam started the diet we wanted to hold off on radiation until we saw tumor growth. That perhaps the diet would be sufficient on its own. We were concerned about the side effects of radiation and had just started the diet a few weeks earlier and were still trying to get the Metformin and HBOT arranged. The idea was to have another MRI on Dec 12th for a second data point. Unfortunately, during the first week of December Adam had three mild seizures over a period of two days. To date this was the first time Adam had suffered anything other than a headache from the tumor. We elected to start the radiation right away and Adam was prescribed two other meds: Valporic Acid for the seizures and Carnitor to improve the effectiveness of the diet.

In December and January Adam had 30 sessions of radiation. When possible he had HBOT treatment right before the radiation (this we managed for about 20-25 of the treatments), he was taking Metformin, Valporic Acid, Carnitor, and was eating a calorie restricted ketogenic diet. His target glucose level was sub 3.5 mmol/l and ketone level above 5 mmol/l and he managed to stay in these ranges until Christmas. Between Christmas and New Years he caught a bug and got sick, between the vomiting and diarrhea he quickly lost 6 lbs. We had to adjust his diet for about two weeks to get his weight back (still no carbs but lots of protein). He got back on track and is now on a standard 4:1 ketogenic diet (no calorie restriction) and is doing very well.

On Feb 12th Adam had his first MRI post radiation. There was some concern that because of the recent radiation and the HBOT he might have a false positive. Increased permeability in the blood brain barrier and swelling from radiation can cause this to happen. In the end the MRI came back clean! No visible tumor. While we are very happy with this result we aren’t taking it easy. GBM is notorious for hiding and coming back, we plan on keeping up with the Metformin, HBOT (twice a week), and the diet until we see consecutive clean scans, and even then plan to rotate in and out of the diet for a number of years.

We continue to take the Carnitor and Valporic Acid. I think it is worth mentioning that this protocol took tremendous self-discipline on Adam’s part, but the overall impact on quality of life was minor. He missed half days of school while getting radiation and lost hair where the radiation was given, but he didn’t suffer fatigue or other common side effects associated with radiation to the brain. He kept up with his dancing, rock climbing, swimming, and other activities throughout the months. Christmas was the hardest being on the diet and was not just on him, friends and family really struggled with the fact that he couldn’t enjoy traditional holiday foods and treats. This approach would be very challenging for someone without a strong support structure. Thank you to everyone that helped Adam out with kind words and prayers.

Thursday, 3 October 2013

Today was the day I got my staples taken out.  It was kind of cool to have the staples in my head. It would have made a great costume for Halloween. But I am happy to have them out.

Tuesday, 1 October 2013

Hi it's Adam.  Thanks for all the kind words. I had a great day today and went to rock climbing. I'm kinda amazed that I feel so good so soon but I'll be careful not to worry.

Thursday, 26 September 2013

Terry Fox Run

Thank you to everyone that ran for Adam during the Terry Fox Run. He really got a kick out of the A-Team shirts and Rebecca & I were totally blown away by the incredible support. We were sitting down as a family for dinner (first time since Monday) and were talking about our calendar and what's coming up and none of us could believe it was still September. This month has felt like a year.

Thinking about the Terry Fox Run reminded me of the first time Adam ever ran for cancer in elementary school. He was practicing around the yard doing the distinct hop that Terry Fox had in his stride and Rebecca and I asked him why he was doing the hop and he explained to us that he was supposed to run "like" Terry Fox. We had a good laugh and explained that this meant that he should do it with purpose and to help others and not exactly the same way. Typical Adam wanting to do exactly what he was asked to do. Never would have thought people would ever be running for him.


Adam now has a four week break before he starts radiation and chemo. The plan is enjoy the break before he will need to make early morning trips to the Tom Baker clinic Monday through Friday. He will have six weeks of treatment and hopes to be able to continue attending school as much as possible.

When asked what was more painful... the game or brain surgery he said the game.

Adam, mom, Amy & Jenny feeling great cheering his brother Billy on against St. Francis Browns.