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.