My Experience of the Ketogenic Diet 2017: The Good, The Bad and The Ugly
Well hasn’t it been a year. So busy. I’ve spent most of 2018 struggling with gastrointestinal bleeding first due to non cirrhotic portal hypertension (chemotherapy induced) and then radiation enteritis. I have had some difficulty writing as I have felt so unwell and this
June 2017: CT scan showed slight progression of cancer. Diet over the last six months has contained increasing levels of sugar
Can the tumour be beaten down by cutting my sugar intake? The ketogenic diet seemed a possible strategy to achieve this.
The Standard American diet contains up to 60% carbohydrates and is high in meat, dairy, processed and refined food products. Since finishing chemotherapy I have tried to eat organic and vegan to improve my prognosis. The various diets I have tried include the alkaline diet, vegan, raw vegan and the Budwig diet (contains some cottage cheese). Clearly the tumour is starting to be able to outflank these dietary defences so I needed a different approach.
I had read with great fascination the work of Thomas Seyfried and Dominic D’Agostino in developing the ketogenic diet. Most of the science is basic i.e Petri dish and animal based. There are few clinical studies. However Facebook and other websites provided many anecdotes of cancer patients using the ketogenic diet with varying degrees of success.
The idea behind the diet is that cancer cells like to use sugar as their main fuel. If they are deprived of sugar – cancer cells cannot divide and will die off by programmed cell death leading to tumour shrinkage. But deprived of sugar the body needs alternative fuel – and this is provided in the form of fat and also protein.
Fat is metabolised to ketone bodies which can fuel the major organs of the body including heart and brain.
I did understand that the clinical data is rather sparse. However, I had seen enough credible anecdotes to believe that this “diet” might slow down or stop a tumour. Just for reference here are the two opposing arguments:
For the ketogenic diet:
Against the ketogenic diet:
So there you have it.
Once the disappointing news of the less than satisfactory CT scan had sunk in and the fear had receded I took a closer look at the ketogenic diet but I was not at all keen to eat animal products being a vegan.
So what would I need?
- I read all I could about the ketogenic diet.
- I downloaded the Cronometer app – a superb device for tracking calories, carbs, fat intake etc
- I purchased avocadoes, nuts, non dairy milks and set about developing some meal plans aiming for less than 20g net carbs daily. For reference there are 20g net carbs in just one apple – so not much room for manoeuvre.
The first few days were quite simple – lots of flaxseed, tofu, avocado and when I measured my urinary ketones – wow! I was in ketosis! Surely it can’t be this easy I thought!
No it is not this easy. I found out what keto flu is. Well I am not sure if it was that – I may have picked up a bug. A visit to the doctors for routine blood test was followed rather quickly by the onset of nausea, vomiting and diarrhoea. This soon resolved and I was out walking again very soon. Ketone levels were rather high after this episode of d+v reaching the 4-5 mM level. The rest of this week passed without too much bother.
Fatigue, cramps, nausea and some bloating. These symptoms all seemed to settle quickly but I was having some difficulty staying in nutritional ketosis at the level required. The scientists seemed to be suggesting that the glucose to ketone ratio should be between 1-2. I like the food on this diet – essentially it a strict version of the vegan diet without grains and legumes and restricted. It seems that lots of things can tip one out of ketosis. I purchased Ellen Davis’ book (Fighting Cancer with a ketogenic diet) – pitfalls can be caffeine, too much protein, eating foods with MSG e.g nutritional yeast. It seems fairly straightforward to achieve ketone levels of around 1mM. But getting the level higher seems to require a daily carb intake of 10-15g and fats as 80% of caloric intake. Getting the “macros” right seems essential. One side effect of the Keto genie diet is bad breath due to ketones…. Luckily Jackie is one of those people who can’t smell ketones..”
Dealing with keto flu – I try to maintain 3-4 litres intake of fluid a day and take mineral supplements. However the ketone levels aren’t rising too well. So I decide to do some fasting (500 calories per day) on top of the diet. I also add in some exogenous ketones and Medium Chain Triglyceride powder which are easily available on the internet. With added fasting, my blood sugar levels are around 3-4 mM and ketones easily spike over 2-3 mM and at their highest reach 5 mM. But on completing the fast and refeeding I am afflicted by pain, abdominal swelling and dreadful fatigue. I feel dreadful. These symptoms pass off after a few days.
After the first four weeks the family holiday is scheduled in Cornwall. I am feeling OK and trying to arrange hyperbaric oxygen at the MS centre. The holiday is fun but I decide to do another fast and the same thing happens when I refeed. I develop a swollen abdomen. This time It is tense and painful. I look in the mirror. My tum sticks out, the veins are distended, my ankles are slightly puffy. I am not jaundiced but when I examine myself I worry that I have developed ascitic fluid. Oh dear – is it malignant or is my liver packing up?
Well one of the effects of the ketogenic diet was to make the lump in my abdomen much much more difficult to feel. So I don’t think it is malignant spread. So what has upset my liver? Is it the off label medications? No. Is it supplement related – too much curcumin? Stop that. But I think back to my physiology – starvation and refeeding can lead to liver injury. My diet has been calorie restricted and low in carbs, so perhaps a fatty liver developed.
Well it all settled down and we returned home to Bristol to prepare for our next challenge: The West Highland Way
I try to do the walk from Glasgow to Fort William on a vegan calorie restricted ketogenic diet while taking Metformin. Not a good idea. Within two days I am having to relax the diet and increase caloric intake. I’m Ok walking on the flat but the power in my legs evaporates on any kind of slope. I start eating eggs and fish. On this regime I manage to complete the 10-15 miles walking every day. Celebrating at the finish with a small feast – including my favourite sticky toffee pudding!!
Oh dear – big big tum again! This time it takes nearly a week to resolve and during this time I have a CT scan….. My oncologist is initially alarmed – a diagnosis of cancer and presenting with ascites is of concern. But I don’t want any more tests at this stage and decide to
persevere with the diet and start hyperbaric oxygen treatment. I am feeling better walking 6-7 miles per day.
But I am trying to to refine my diet to achieve a greater degree of ketosis. I cut my net carb intake to 10-15g daily. I increase my fat intake to 80-85% of caloric intake. I cut caffeine back, avoid nutritional yeast. And presto the ketone levels now rise above 2-3 mM consistently.
However my abdomen starts to swell again – it seems my liver doesn’t like high fat levels / ketones / low carb intake or all of the above.
The graph below shows my blood glucose levels (mM, blue circles) and ketone levels (mM, green circles. The spikes in ketone levels were followed by periods of unwell. Overall my blood sugar didn’t change much overall and even seemed to rise slowly as time passed.
Finally I resolve to increase my carb intake to nearer 50-100g daily. I feel better almost immediately – tummy down, ankles down and the return of energy!
And the food is more diverse and palatable.
So what are the main points:
It is unclear that the Ketogenic diet alone can starve cancer of fuel. Indeed some cancers use the amino acid glutamine as a fuel while others actually feed off fat and ketones… (see Jane McLelland’s new book: How to Starve Cancer – available on amazon and kindle – I strongly recommend this book for those considering off label drugs such as metformin, statins, aspirin and dietary interventions to slow the progression of cancer).
If you are a patient do the keto diet under close supervision.
Don’t push it if your liver reserves are low. I believe the long term effects of the Ketogenic diet on heart, liver, brain etc have not been defined as yet in the clinic. Non alcoholic fatty liver is increasingly prevalent and adding more fat to the diet may cause progression to more serious liver disease. Similarly chemotherapy patients may have damaged livers. A high fat diet may do more harm than good in these individuals. Other patients with reduced liver function also need to be cautious.
The interaction between the ketogenic diet and medications which inhibit metabolic pathways is as yet unclear – so care is needed
Watch for dehydration, mineral loss
Next scan – the cancer has not grown but there are signs of portal hypertension. That is to say the pressure in the blood vessels leading to the level is elevated. This can lead to bleeding if the resulting varicose veins or varicose decide to pop. These changes seem to have preceded the dietary intervention so my belief is that chemotherapy caused most of the liver damage. This has been confirmed by my most recent MRI which showed a picture of platinum based chemotherapy damage.
The good = the cancer seemed to stabilise, I lost weight.
The Bad = difficult diet to follow, Keto flu, needs constant monitoring, difficult for vegans
The Ugly = are there long term complications of this diet? The liver is crucial organ in the struggle to keep the crab at bay. Patients with pre-existing liver disease and chemotherapy induced liver dysfunction should avoid this diet or at the very least receive screening to assess risk.
Overall I still believe it is essential to restrict sugar intake but a gentler approach may be required.