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

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 12^th 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 12^th 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 12^th 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.

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.

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.

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.

AWESOME FRIENDS!

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.

GO YOTES GO!!!!

Adam's coming home today!  Another heroic recovery.  We will provide another more detailed post leter this evening. Thank you for all the prayers and fasting, it worked!

Loving the ham and cheese from the cafeteria

Adam's doing great. He has his appetite back and most of the tubes are gone. We will be leaving ICU later today to go to Unit 3. Anyone wanting to visit can come after supper and find Adam on Unit 3.

Adam's moving his extremities his right side movement is strong and he has been able to communicate and find words effectively.  His biggest problem is the nausea but they are giving him medicine for it.

Adam's surgery has gone well. He's in ICU at the Children's. The doctor said he'd have a more thorough post operation evaluation but that he is doing well. He was smiling at the idea of having an ambulance ride. On a cool note, his ambulance driver was a family friend Blain. Thanks Blain.

I make this look good!

Welcome to Adam's got SWAG blog

As you all know Adam has been diagnosed with brain cancer and will be having lots going on. We plan to use this blog to provide updates on Adam and help his many friends and family get to know him better and share their support for him.

A short history on Adam's case:

Aug 29, 2013 - Adam goes for a routine eye exam before school starts and the doctor notices swelling on the optic nerve, she sends us straight over to a specialist who sends us to the emergency at the Alberta Children's Hospital. Because it's late on Thursday going into a long weekend Adam is sent home with the understanding that he will have an MRI possibly on Friday but probably early next week.

Sep 2, 2013 - Adam turns 13. He gets a pet snake. He and his brother summit Nihahi Ridge (8,350 ft) with his dad and his dad's friend. In his journal he writes "best day ever".

Sep 4, 2013 - Adam goes in for an MRI followed by a meeting with neurology. We are informed that he has a very large tumor and that he will need to have surgery on Friday. They start him on a steroid right away, we go home for him to collect his things for the stay in the hospital, he receives a priesthood blessing from his dad, and he is admitted into the Alberta Children's Hospital. This is a fantastic hospital with amazing staff and doctors.

Sep 6, 2013 - Dr. Gallagher removes the tumor. Adam wakes up in recovery and promptly begins telling jokes to the nurses and doctors. Quoting from his favorite comedian Brian Regan (google his emergency room bit, it's super funny). Surgery went well and it'll take about a week for lab results on the tumor. We have a post op MRI on the Sunday and it looks good.

Sep 10, 2013 - Adam goes home. Incredible recovery. Yesterday he actually walked with his dad from the Children's to Market Mall for some pizza and a new hat (about 20 mins one way). He's super upbeat and flaunts the fact that the doctors have given him a free pass from school through the end of the week. He uses that time to go fishing and try out for a rock climbing team. Seriously.

Sep 16, 2013 - We get a call from the nurse telling us the lab results came back and that Adam has cancer and will need additional treatment. We meet with the oncology team that afternoon and are informed that they will have a larger meeting with neurology to determine the next course of action tomorrow afternoon. Adam has his first hip-hop dance lesson and loves it.

Sep 18, 2013 - We meet with neurology again and determine that there is still some remaining tumor that we can take out safely; so Adam is scheduled for a second surgery for Sep 24, 2013 with Dr. Hader. We are also informed he has made the climbing team.

Sep 19-21, 2013 - Adam and 20 other scouts go to Camp Impeesa and have a total blast doing archery, throwing tomahawks, running the obstacle course, zip lining, and summiting Table Mountain.

Sep 22, 2013 - Adam receives a second blessing from his father in preparation for the surgery on Tuesday. He's in great spirits and is looking forward to school and his dance class tomorrow. He is super grateful of all the attention he is getting and the prayers, fasting, and good thoughts that keep coming. I asked him recently, "Has this experience made you feel closer to your Heavenly Father?" He said it has, I said, "Me too... there isn't much good you can say comes from having cancer but that is certainly one good thing." He agreed. Anyone that wishes to join the family in a fast on Tuesday is welcome to. God Bless.