Quick update and a very, very LONG post about the VERY INFORMATIVE keto conference

I’m once again at the Wonderful World of MD Anderson. Not that anyone is happy to be here, but if you have to have cancer it’s a pretty good place to be. Yesterday my scan wasn’t until 1 PM, so Lois and I walked 5 ½ miles. I always feel a lot better after getting some exercise. It was also my first opportunity to use the Apple watch for an outside jaunt. The scan was fine but I had a little stomach upset from the contrast dye. Lois laughed when I told her sauerkraut’s probiotics help settle any stomach upset, she says she just cannot imagine that sauerkraut would settle anything. You wait and watch! Sooner or later she’s going to have a stomach ache, try it, and find that it’s nature’s perfect fermented food.

Today we couldn’t walk because it was storming, as is pretty common in Houston. According to my watch, our trip to my various appointments resulted in 1 ½ miles of walking. We went in to see the oncologist in the afternoon and got great news. There was no change in the scan and he says most people have regrowth before this point. He talked to us for a long while. It turns out he’s headed to Zurich just 2 weeks before we are. We did question him about a variety of things including CBD oil ( he says the jury is still out on the efficacy for making cancer cells susceptible to apoptosis), hyperbaric chambers (he says although some have shown success with this, there is more evidence that cancers can thrive on oxygen), and supplements (he said a daily multivitamin is fine but people who take too many anti-oxidants can inadvertently feed the cancer). The real news we were able to get out of him was my schedule moving forward. It seems that we will be friends for a very long time (I hope). I start chemo round 11 tonight, then the 12th round in 28 days. After that I go off the chemo cold turkey. And then we wait…we watch…we scan every 8 weeks for a year, then (starting May 2018) every 12 weeks for a year, then (starting May 2019) every 16 weeks for a year. We didn’t go out further than that but I think it goes to 6 months after that. This guy is all about commitment and I’m very much looking forward to being Dr. No Naps’ friend for a very, very long time!

We were so excited that my scan was good that we almost forgot to see the nutritionist. Luckily, Lois remembered and we had someone track her down. I was a bit nervous about talking to someone there about the ketogenic diet because it’s not totally mainstream yet. Most doctors focus on their area and most oncologists focus on genetic models of cancer. They research and practice standard of care, which involves chemo, radiation, etc., and although MD Anderson is all about the whole patient, that doesn’t mean that all of the doctors know about all of the other parts of “integrated medicine.”
To my surprise, the nutritionist had gone to a keto conference, had met some of the same people I’d met in Tampa, and was very excited to have a patient who was on this diet. We talked for a while and she felt that we can really learn from one another. She got me hooked up with an online tool called the Keto Calculator. I’d learned about this at the conference (it’s an online program that helps you keep track of diet, glucose and ketone measurements, contains recipes, etc.), but only a nutritionist could get me registered on this free website to use the tool. I now have access- I feel like a celebrity!
It’s finally time to post all of the things I learned at the 2nd Annual Conference on Nutritional Ketosis and Metabolic Therapeutics. If this doesn’t interest you, feel free to stop reading. However, if you are a person who nerds out over minute details and cool ways nutrition can save your ass, keep on reading!

First of all, let me just say that I don’t think this diet is for everyone and if you decide to do it, you might consider finding a nutritionist to help you stay hydrated, get enough calories, and get all of your micronutrients. It’s virtually impossible to get all of the recommended vitamins when you are not eating much to begin with so proceed with caution. Also, getting off of sugar is no fun. This could lead to divorce in some cases.

I don’t even believe this diet is good for all types of cancer. In fact, while many studies have shown great evidence for the diet’s ability to help standard therapies (like chemo and radiation) stave off Glioblastoma and other brain cancers, researchers noted that there are some strains of breast cancer, colon cancer, and other cancers that have not responded well to a ketogenic diet. The diet has been used to treat epilepsy for over 100 years when traditional drug therapies are not tolerated (primarily in children). There’s also evidence that it relieves gout, inflammatory diseases, and effects of aging on the human body. I met 2 brain cancer survivors who are also on this diet and we were all trying to guess one another’s ages. We all guessed late 20s or 30s and we were all over 40. Not everyone at the conference was on the diet, but most people were, meaning people were very skinny and looked very young.

The keynote speaker discussed (1) how ketogenic diets affect inflammation, aging, and disease (spoiler: lots of evidence it’s a benefit), (2) caloric restriction (or fasting) and how it plays a role in helping produce ketones and lower blood glucose (as an aside, isn’t it weird that almost every religion incorporates some kind of fasting ritual for clarity of mind and good health), (3) the role of ketones themselves in keeping healthy cells healthy while helping unhealthy cells commit suicide (A.K.A. apoptosis).

I’m no biochemist, so forgive me for my errors but here it goes! The short story is that our bodies have evolved so that when we have glucose (carbohydrates), we burn that energy very fast but when we are in fasting or starvation mode (so perhaps during long winters), our bodies make ketones to burn in place of the glucose. At first we feel sluggish because our bodies are accustomed to burning fast energy sources, but over time without glucose we become “fat adapted.” This just means that our cells throughout our bodies turn off the glucose receptors and turn on the ketone receptors. Healthy cells in the body and in the brain can use ketones for energy and some say it’s a better energy source because it’s a slower energy release, lasting longer (this is why some top athletes have moved to a ketogenic diet, including the LA Lakers). Cancer cells, however, thrive on glucose and are glucose wasters. When the bi-products of ketones (BHB) get to the cancer cell, they weaken the cell. In general, most of the researchers said that ketogenic diet alone is best for preventing cancer, and only works marginally well when used alone for treatment of cancer. However, in most of the studies, the best treatment effects were found when used with other therapies (i.e., chemo, radiation, etc.).

Dr. Thomas Seyfried, a big name in this area and a professor from Boston College, showed evidence from human and animal models. In one study, caloric restriction (CR) with a ketogenic diet (KD) reduced invasion of GBM but did not shrink or kill the tumor. This nutritional change is considered a long term stressor to the disease. When chemotherapy (a short term stressor to the disease) was added with the CR and KD, death of tumor cells resulted. He referred to long term stressors (such as diet) as “press disturbances” and short term stressors (such as chemo, radiation, glutamine inhibitors, etc.) as “pulse disturbances.” His major message was that we can weaken the cancer cells with press disturbances and then hit them hard with press disturbances, hopefully pushing them into apoptosis. After all, cancer cells are always on the ledge. They may just need a little push. Therefore, getting patients on the diet before treatment begins is key, thank you Dr. Ted Reid for letting us know about this diet a few weeks before my treatment began!

A radiology oncologist from UCLA did a similar set of studies, where he looked at combinations of therapies to slow or stop tumor growth. He found that fasting every other day was helpful for slowing growth but intermittent fasting with radiation was more effective. Likewise, the ketogenic diet was helpful, but when KD was paired with radiation, the results were much better. The three treatments together (i.e., KD, radiation, and chemo) were the most effective of all. He did end with some very important recommendations: (1) the goal should be to decrease insulin and glucose with diet or something like metformin (if needed) (2) saturated and monounsaturated fats are “good fats,” whereas polyunsaturated fats should not be consumed (3) the food should be “clean,” grass-fed meats, high omega 3’s (4) stress management is very important because hormones (such as cortisol) increase glucose levels in the blood. I’m using point #4 as often as possible to get people to leave me alone.

A big theme seemed to be the need to learn more about the role the ketones themselves serve in encouraging apoptosis in cancer cells. This is not yet fully understood, however, plenty of research was described where introducing exogenous ketones seemed to help prevent seizures, slow tumor growth, etc. Although the mechanism by which this occurs is not fully understood, the results were enough to lead me to introduce a moderate amount of exogenous ketones to my diet.
Personally, I enjoyed meeting the people involved in this community. They seem to genuinely believe in the diet and want to create products, do research, and exercise whatever talent they have to further explore this diet. I presented a poster on how to investigate the barriers to entering and maintaining the diet for those with and without disease. I found that this was of much interest to the scientists, many of them mentioned issues like (1) how do we get the research read by more oncologists (2) how do we make the diet more affordable (3) how do we provide more support for people trying to maintain the diet?
For example, in my personal journey, I’ve found that this diet takes planning. As a person who pretty much didn’t cook before, I’ve had to learn how to not only cook, but to cook in a fundamentally different way and with ingredients I’d never heard of. Also, I had to know where to get the ingredients. I didn’t know what these ingredients were! MCT oil, or psyllium husk, or almond flour, or coconut flour, liquid stevia, whey protein, casein, the list goes on and on… It took forever to get my kitchen stocked with the staples. What I’ve since learned is that most keto meals are pretty simple and since they are high calorie, the portions are small. As you can imagine, this cooking issue is fine until you find yourself extra busy or traveling.

So the keto community has developed eat and go products. I wouldn’t recommend anyone rely on these ready to eat meals, but various vendors sell frozen meals (Questketo & KetoVie Café), prefab formula shakes (Vitaflo), mixes that are flour consistencies (Ketovie), premade cookies (Keto Kookie), Italian “pastas” and “breads” (Le Gamberi) and one company even makes a low carb wine (Dry Farm Wines). The vendors had samples out and for the first time since going on this diet, I was free to just pick up something off of a table and eat it with few worries because the information about the fat content was right there in front of me. If the food was a recipe containing their ingredients, they also gave our recipes so that is a bonus!

Another major issue standing in people’s way is cost. This diet can get expensive if you are buying the oils, nut flours, etc. If you are just going low carb for nutritional purposes, you can probably do it relatively cheaply. However, for therapeutic ketosis it gets rather expensive. Many people discussed how to make this diet more affordable. Some ideas were working on labeling more of the foods as medical foods followed by lobbying for medical foods to be covered by health insurance or tax deductions.

A third issue is just flat out laziness. This shit is hard, people. It’s a daily and sometimes hourly commitment. Only a seriously stubborn person (or obsessive prone) person would do this on their own). So the question becomes, essentially, how do we put strategies in place to help people who struggle but otherwise want to engage in this diet?
There’s so much more I could write about. For example, a database effort that’s being launched to increase the samples for human studies, the Ketopet Sanctuary that’s currently outside of Austin (seriously, you should look this up- very cool stuff they are doing there), the focus on gut health. But instead, I will end with one last but important note about tools.

Many people have asked me about how I measure ketones. A person can measure urine ketones with strips you buy at the pharmacy. You pee on the strip and then compare the color to the bottle and it tells you how many ketones are in your urine. This measures the ketones that your body is not using and therefore flushing out. This is a good, inexpensive method to see if you are in nutritional ketosis. After a while, though, after your body becomes fat adapted the strips may show low simply because your body is using more of the ketones for energy and fewer are being flushed (literally). Another option is to measure blood ketones. This is rather expensive. The Precision Xtra is a monitor that can measure both glucose and ketones in the blood. You just have to have the correct strips. Unfortunately, in the US, the strips are very expensive, sometimes $9-$10. A woman I met from Canada said she can get them for around $2. I guess this is how I sometimes order them on Amazon for that price. Who knew Amazon had a ketone/glucose blood strips black market?! This is a measure of how much free floating ketones are in your blood. It tells you if you have them, but not much else. However, it’s still a better method than measuring waste. A Swedish company has developed a breathalyzer called Ketonix. It measures acetone from the lungs. Apparently when you burn ketones your body produces acetone and at least some of it is exhaled in your breath.

This device is around $150 but can be used repeatedly. It hooks up to your computer and interacts with software to give a measurement. I’ve only had the breathalyzer for a little over a week so I’ve not quite figured it out- more to come on that. My plan is to keep a record of all 3 measurements to see if my measurements correlate. For cancer patients, Seyfried and his colleague Volek have developed a Glucose Ketone Index (GKI) that serves as a guide on what your glucose/ketone ratios should be for optimal tumor management.

Whew, that was a whole lot of typing! See why I put this off for so long? If anyone wants any additional information, I can either give you my best answer or point you in the right direction. I have business cards, product information, recipes, and research manuscripts coming out of my ears over here. That conference gave me more information than I know what to do with but I definitely learned a lot!