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Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Andrew was just 27 when he was diagnosed with a high grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy. After four months he stopped the treatment and made significant changes to his diet. Two years after surgery, a scan has shown no tumour growth, he has been able to come off all medication and is hoping to go back to work to investigate how nutritional therapy, including a restricted ketogenic diet, could help other patients.
I was working on my Masters in nutritional therapy at Westminster University and happened to be travelling on a train after visiting the gym when I had a brain haemorrhage on 13th April 2013. I had a number of tonic clonic seizures which were quite dangerous and, as I came round, I realised I had been unconscious for quite a long time. It was a busy train and people around me were angry at the delay which had been caused. I was carried off on a stretcher and taken to St Peter’s Hospital, Chertsey.
I was in a lot of pain and didn’t really know what was going on. I felt as if someone had hit me over the head with a hammer, my tongue was in a mess where I had bitten it and I had bruises and other superficial injuries. It was a Friday and no MRI scans could take place over the weekend so I had a CT scan. The result showed what the doctors said was a cavernous hemangioma which is a cluster of abnormal blood vessels. I was told it was low grade, nothing to worry about, that surgery was possible but not necessarily needed and that I would have to live my life on medication to control seizures.
Despite the assurances that I should not worry, I knew things were more serious than I had been told. My symptoms were terrible; I had really bad headaches. I had learnt a bit about brain tumours at university but an MRI scan confirmed the diagnosis and I had a very confident neurosurgeon who told me to stop worrying.
There was an eight month wait for surgery on the NHS and I was still having seizures and problems with migraines. Because I was able to access private health care I managed to get a date in May. The operation went ahead and, six weeks later, I had call and was told over the phone that a mistake had been made and that I actually had a malignant brain tumour which was incurable but could be treated. I couldn’t believe what I was being told and that there had been such a misdiagnosis. After the pathology report came through I had a meeting with the neurosurgeon who was very apologetic and said it had been a very unusual looking tumour.
The tumour was the size of a golf ball and was identified as grade 3 anaplastic astrocytoma. It was situated between the temporal and frontal lobe in the middle of the areas of my brain controlling speech and movement. This explained why, before and after surgery, I had episodes where my speech would go completely. Fortunately, this has now been resolved.
I was told that the tumour had been removed although microscopic particles of disease remained and that I would be on medication to control epilepsy indefinitely. I was also told that I would need radiotherapy and chemotherapy, the latter for up to two years.
The chemotherapy started and I had problems with my short term memory. In addition to this I was nauseous and so fatigued that I was bed-bound for months. I was taking so much medication for the epilepsy that I was having migraines. I asked a lot of questions about the chemotherapy; would it mean I would live longer and was it effective on my type of tumour? After being told it probably wouldn’t be effective, I decided to stop the treatment.
I decided to take more control of my condition. I had continued studying for my Masters at home, doing a lot of reading including scientific papers, text books on cancer metabolism, and also studying nutrition and dietetics.
At the time I became ill, my mother Maureen was diagnosed with oesophageal cancer. She had a lot of problems with her radiotherapy and chemotherapy and came off the treatment. We made high fat, low carbohydrate shakes at home which we both drank and she made a dramatic improvement.
I was very interested in the ketogenic diet which is high-fat, adequate-protein and low-carbohydrate, forcing the body to burn fats rather than carbohydrates. To start with, I lowered my carbohydrates to 100g a day and, after a few weeks, this went down to 50g. At first, I failed miserably. Now I am on an individual, restricted ketogenic diet which, although unconventional, is working for me. I have sensitivities to certain foods, such as coconut ¬¬- in any form it gives me instant and horrific migraines - which are linked to my tumour. I eat mostly animal fats and no fruit or vegetables at all, instead relying on getting sufficient micronutrients from animals.
For breakfast I will typically have lambs brains with scrambled eggs and ghee. It is high in omega 3 fatty acids, which are anti-inflammatory, and a perfect ketogenic food. The lamb’s brain has all the components on which my brain needs to thrive but without the toxicity you can get in oily fish. Lunch is usually a pizza made from cricket flour with bacon, egg and ghee. My third meal of the day is usually red meat which gives me B vitamins for energy. I will also have some other type of organ meat, like liver, which is more nutrient-dense than many vegetables. This allows me to have enough micronutrients which I would otherwise not get on my diet.
I also eat kidneys, the pancreas and thymus gland which all come from a local farm with high animal welfare standards and are supplied by my local butcher. In addition to this, I eat oily fish, including sardines and mackerel, which are very high in essential fatty acids. Occasionally I eat macadamia nuts and avocado.
Initially the response I had from the medical establishment was not great. It was for this reason that, in October 2014, I moved my treatment from the Royal Marsden Hospital to Charing Cross and started to see Kevin O’Neill. I first heard of him at a conference and learned of the work on metabolic therapy which was being done with the Barrow Neurological Institute in Arizona. I felt enormously relieved because, for a long time, I felt I had been working on this on my own.
My latest scan has shown there has been no enhancement of my tumour and there is no visible disease. The scar tissue has healed nicely and I feel much improved. I have been able to come off the medication and have lots of energy where before I had little or none.
Patients must only follow a ketogenic diet under medical supervision. It has been used in children with epilepsy and there is a very interesting programme in America which has had good results where pets with cancer have been put on this diet and also undergo hyperbaric oxygen therapy. You can read more about this at www.ketopet.com. We now need to look for medical proof in humans and I am hoping to work with other patients to see how diets can be tailored for them, working towards a clinical trial.
Initially, my prognosis was poor and although I still have a high grade tumour, the results of my latest scan have been very positive. I am off medication and no longer have the extreme fatigue, facial paraesthesia or vertigo. People ask me how I have any energy if I don’t eat carbohydrates. My body is using ketones for energy and I feel very good.