Glioblastoma Multiforme or GBM is a deadly diagnosis. With the best available care, the average expected survival is 12 months. Fewer than 10% of people survive 5 years[i]. Emerging evidence supports a dietary approach in conjunction with standard of care as helping to boost the odds. In February I was able to interview Christophe, a GBM survivor and ketogenic diet advocate, who has more than beaten the odds. Here is his story.
Christophe came to the US from France in 2000 to study. He was fairly fit when he arrived but a combination of the standard American diet and university food followed by business travel food caused his weight to soar. In the fall of 2011 Christophe may not have been the epitome of health at 325 lbs. but he was a very happy man. He had just started a new job, which he really liked, and was preparing to marry his beautiful fiancée Elizabeth. He was, as he put it “in a good place”.
He and Elizabeth were attending a friend’s wedding in Cape Cod when the first sign of trouble appeared. Christophe had a seizure. He was immediately taken to the local hospital where, upon arrival, had a second seizure. He was then transferred to a larger hospital in Boston where he underwent multiple tests, including CT, MRI and PET scans, during a few days of observation. Despite the multiple tests, results were inconclusive. He was released and he flew back to Chicago. At a follow up appointment later that month, Christophe sat across from a neurologist in Chicago who reviewed the test results from Boston. His doctor took one look at the scans and said there was a possibility that he had a brain tumor. He suggested Christophe go down one floor; to oncology.
He was told that if it was in fact a tumor, it was probably low grade, and as Christophe and Elizabeth were only two weeks away from being married his doctor suggested that they do so. A biopsy could wait until after the after the wedding. Christophe smiled through tears as he told me this part of his story, “I told my fiancé ‘this is crazy we can't get married if I might have a brain tumor you can't do this’. She looked at me and she said ‘Yes we can and ultimately, it's not your call, it’s mine’ so we got married.” He laughed and I thought to myself that had I been in his fiancées shoes I would have said the same thing. The wedding was beautiful. It was a joy filled, flawless event until someone stepped on Elizabeth’s foot, breaking it, and they were forced to cancel the honeymoon. The change of plans meant that they could do the biopsy a little earlier and so it was arranged.
The news was not good. A grade four glioblastoma brain tumor. Christophe told me how kind the surgeon was, “He told me that they would operate the next day. He was honest about my chances and did his best to prepare me mentally.” Christophe was told about the poor survival rates. He encouraged Christophe to seek every possible support including spiritual. “He was there for my wife and my family”. Christophe’s surgery went well, the surgeons were able to remove 98% of the visible tumor and Christophe woke up without any major deficits. He could see, hear speak and walk. He had a seizure a few days later but as Christophe put it, “nothing to write home about”. But complications did arise, a few weeks post-surgery his wound reopened. Christophe had enrolled in a clinical trial and due to his wound issues radiation therapy was delayed. He was never sure if he was in the research arm or the control arm but both arms included standard of care.
The wound issues kept Christophe in and out of the surgery ward while he waited to start radiation and he admits to turning to food for comfort at that time. “My diet was terrible back then, it was restaurant food or food court food.” In March 2012, four months after his first surgery, Christophe had an MRI which revealed a large mass. At first there was hope that the image on the MRI was radiation necrosis but the pathology later revealed that the tumor had grown back and was bigger than the original one. Christophe underwent his second surgery and this time lost a portion of his peripheral vision. It was time to consider another research trial.
He enrolled in one and in August 2012 an MRI once again heralded bad news. More significant tumor progression. Christophe and Liz had planned a trip to France for that August. When they left France to come home Christophe cried, unsure if that was the last time he would be in his home country and if he had just said “goodbye” to his friends and family for the final time. When he returned to the US in September he enrolled in one last trial. As luck would have it, his sister in-law Clare had been researching alternative therapies and had told him about the Ketogenic diet. There was some evidence of improved outcomes with a combination of a ketogenic diet and chemotherapy and radiation. Christophe studied the trial documents and did not see any specifics on diet so he decided to augment his therapy with a ketogenic diet. Clare also found some research suggesting fasting can help increase efficacy in chemotherapy treatments.
Given the limited scope of research, Christophe randomly decided to fast for 24 hours before his injection and 24 hours after while eating a highly ketogenic diet in between treatments. I asked Christophe if he tracked his macros at that time, “I was too tired to track much back then. I ate zero carb and probably a bit too much protein. I then ate zero carb for two years. No vegetables. I said ‘I don’t care how constipated I get, I don’t care how many headaches I get, I don’t care how many times my mother calls and tells me I need to eat my greens, I am not eating carbs. I am not going to die from this.’ It’s no carbs or nothing.” Christophe was adamant. It was clear that he had committed to a path and was going to stick to it.
I asked him what his diet consisted of in those first two years. “In the beginning I was heavy on the cheese, beef, eggs and fish when I could. If I'm honest with myself at first it was mostly beef and not even grass fed at the time because I didn't know about the benefits of grass fed beef. I also ate pates, tons of pate that my mom brought back from France. I told myself that if I was going to eat cheese it would be only Swiss or French, or Irish or British from certain regions, or Italian cheeses and nothing else. American cheese I stayed far away from as I just didn’t know the quality of the dairy. I ate mostly raw milk cheeses but that was mostly based on personal preference.” Christophe told me that his oncologist was skeptical. “The first thing he told me was to go and have ice cream and be happy, remember I was still over 300 lbs. at that point.” Christophe was quick to point out that his doctor is a nice man but that his experience with this tumor meant death. “I'm guessing that there are not a lot of patients that have two significant recurrences in less than a year who then make it out so I imagine from his perspective he thought why take enjoyment out of the last few weeks or months of your life? I fully understood his perspective and I'm not blaming him for that because it was logical. He was being human and trying to offer me comfort.” But Christophe was determined to try a different path. In the end his oncologist agreed that his diet would probably not be the thing that would hurt him so Christophe decided to go for it.
His first real resource was a small PDF created by a hospital in Wolfsburg Germany. “There was not much on the internet back then.” I asked Christophe about his tracking of his food. Christophe admits to trying many diets in the past to lose weight. “I couldn't keep myself focused on it. I was trying to go low fat so for a lot of the time I was eating mostly bread and processed cheese and carbs so when I first started the ketogenic diet I was more focused on changing my mindset and my lifestyle and doing the right thing rather than the tracking.” When he did begin to track he aimed for about 70-80% fat. At first his diet resembled the Atkins induction phase without any carbs that John’s Hopkins recommends.
Today Christophe tries to be more careful about tracking calories “I try and stay under 2000. I can't guarantee to do that every day but I try. I continue to intermittently fast too, anywhere from 14 to 23 hours a day every day. I've never had a day that I didn't fast at least 12 hours since I started and if I can fast longer I fast longer. That's my philosophy. If I need lunch it's typically can of sardines or oysters. If I'm hungrier than that I'll have ghee or coconut oil all of which I store in my desk”. At this point in our interview I can’t help laughing and I feel glad that I am not the only one with sardines and coconut oil in my desk drawer at work. Christophe says that he has based his diet on Dr. Dominic D’Agostino’s personal diet. “It is superior in nutrition and it is also convenient”. He mentions his favorite keto food: cod livers, a delicacy in France. “It's from Iceland it comes in a can so you just eat it right out of the can.” He tells me he has one upstairs and offers it to me, “It's delicious” he says, but I’m skeptical. Christophe admitted that perhaps it was a fear of recurrence, or maybe it's just his nature but he has never really cared what people thought about his ketogenic dietary choices. He does feel that for him, being completely zero carb has been pretty tough on his body so he has started to add back some more greens and the occasional handful of macadamia nuts.
When I asked Christophe for his Keto Shout out he was very quick to respond, “That’s easy. My wife! She supported me from day one. When I was physically weak from all the surgeries she helped me with cooking and doing everything right. Everything I needed she was there. And of course I couldn't drive so she was in charge of the shopping and still is to this day.” We talked about the impact that this way of eating has had on his life. “I have not had a seizure and since I went on keto in September 2012. I have more energy, I have lost over 130 pounds and most importantly the tumor started decreasing almost immediately after I started keto. Since January 2013 my MRI has been stable with no evidence of tumor progression.” This is good news indeed, especially when you consider that Christophe and Elizabeth are the proud parents of a toddler. “About three years ago my wife and I looked at each other and said OK we should try. I wasn't sure if it was right for her. I wanted to protect her. I didn't want to leave her with a child alone but she pushed me and it was the right decision.” Christophe shared with me that before he started the diet, he had a sperm analysis done which had revealed a very low sperm count. More and more research is suggesting a ketogenic diet can help with fertility. Christophe and Elizabeth’s son is a testament to that.
Christophe admits that cancer changed him. “I think I'm a better person, a nicer person, a better father, a better husband. I am physically much more capable and active than before the tumor and keto. Now I enjoy physical activity so much I can't go without it for a single day.” Every day he walks barefoot to nearby Lake Michigan. If it’s April through November he goes for a swim. 10 minutes when it is cold and longer as the weather warms up. On the weekends he goes for longer hikes in nature and believes that his earthing[ii] efforts have had a very positive effect on his energy and attitude.
Today Christophe’s scans are stable and there is no evidence of disease; he has faced his diagnosis with great strength and did not let it dictate his life path. His advice to those who are newly diagnosed is: “Trust yourself. You can do this. You can find your path that works for your body. Listen to your body. Listen to your mind. Listen to your spirit. If you have a really good adviser who is really trying to help you and think about you, trust that person.” Oh, and he was right.
Cod livers are delicious!