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Ketogenic Therapy – a report by brain tumour patient, Tom Chapman

13th July 2015

Tom ChapmanThe following is a report from Tom Chapman who has been following the ketogenic diet since June 2013.

“One year plus from incredibly successful surgery and radiotherapy for a brain tumour, I felt it was time to summarise the experience and in particular the part that the ketogenic diet supported by the Astro Fund may have played in it.

Round One… Radiation
I was first diagnosed with a brain tumour in summer 2007. Oligodendroglioma in the left temporal lobe, ping-pong ball size, affecting reading, speaking and thinking. Not good for anyone, and as a church minister those are all things I needed to do… But – crucially – Grade 2 not grade 3 (median life expectancy 8 plus years, not two). Six weeks of radiotherapy lead to five years of relative good health, functionality, work, driving and even another child!

But then the headaches started. Initially the scans were deceptive, they looked alright. But one dreadful holiday, May 2013, brought “migraine” after “migraine” and a creeping loss of visual fold. I got home and tried to run through the next Sunday sermon – and I could not read more than a few lines.

Round Two… Surgery
The next scan revealed that, as the oncologist sensitively put it, the tumour had “changed”; a malignant white mess where once it was calm grey had bided it’s time. Probably grade 3, maybe 4; chemotherapy was offered, which might keep things stable for a month, or a year, or just maybe more. One chink of light – a phone call from Addenbrookes. The tumour had grown in such a way that surgery was now a viable option. A debulking would make some base and make me more comfortable – perhaps extend life – but at the price of up to 40% of vision and the risk of making the whole thing worse. “I won’t even touch that bit at the back” said the surgeon. After a week of agonising we decided – what is there to lose.

Six weeks later – 27th July 2013 – I woke in the delivery room and opened my eyes. The first thing I noticed is that I could see, if anything, better than when I went over. The surgeon hurried past – “It went marvellously. Marvellously.” Two days later I was home at my mother’s house for recovery.  It was a pretty grim experience but we did it. Thanks mum.
We sensed it had gone well but the surgeons report was better than we ever imagined. The debulking exercise became “macroscopically complete resection.” And the icing on the cake was that the cancer cell DNA indicated a good response to PCV chemotherapy.

Round 3… Chemotherapy
By spring 2014 I had three rounds of six; my bone marrow was objecting and I was worried it would stop – but the scan showed no more was needed. No nasty white cells; just a halo of paler grey (the old grade 2, the oncologist suppose).

By spring 2015 it was even better. No grey mass visible at all, let alone white – just a hole. “Looks like a brain that had a tumour” sad a happy oncologist. I don’t suppose he gets to see that very often! This is has lead the doctors to re-examine the evidence from last year and conclude that the grey matter was scar material from the operation, not cancer cells at all. (Otherwise, how else would one explain how they have healed…?) The only remaining symptoms: reading is still a bit slow; a subtle impairment to my vision, and occasional headaches, no worse than those I have had all my life.

So where does the diet fit in?
Whatever it has been going on I am clearly extremely fortunate. The fact is, at a time when I would have expected to be in the last stages, I am alive, well and very functional with scans about as good as they get. I have done nothing to deserve this, any more than other do anything to deserve their suffering. But it is worth asking whether anything else – other than luck and good medical decisions and treatment – have helped this situation.

Some of you will be aware that I have been following the ketogenic diet (low carbs, high fat diet) since very soon after the diagnosis in 2013 – about a month before the operation. This diet is already used clinically to manage child epilepsy. The theory is that cancer cells, which only metabolise glucose, will be stress out by a low-carbohydrate diet, while health cells feast happily on ketones from fat. It’s not that simple of course – your body betrays you and produces your own glucose – and it is pretty hard to keep. I have never managed it perfectly and you are advised to have professional supervision to attempt is (in my case, delivered remotely by Sue Wood of Matthew’s Friends, funded by Astro Brain Tumour Fund).

To find out more you need to go their website. But for what it’s worth my subjective assessment would be:

Alongside the diet I have used a number of other supplements. I still take circumin (turmeric), vitamin C and D, and munch my way through a lot of apricot seeds. And, being a Christian minister, you will not be surprised to hear that I attribute all the benefits I have received ultimately to God. I have benefited from the prayers and support of hundreds, if not thousands, of people. The spiritual and community dimension of these struggles is important.

Keeping the diet has not been easy, especially for the first year; I have always been fairly rigorous but never to the point of daily weighing meal intake, and now I am on top of it I don’t measure blood levels like I did. In retrospect I would not have attempted to maintain the diet while in hospital for the surgery.  I have missed the forbidden fruits, but not as much as I had expected; and on those occasions when I lapse (like Christmas) I have enjoyed them, but not as much as I had expected! The main burden has been on Suzanne, having to prepare multiple meals.

The main difficulty comes with social occasions and works events - usually loaded with cakes – and days when I am working out and about and need to grab a quick lunch are difficult – thank goodness for Pret a Manger salad and M&S prawn cocktails. On balance, though, I would say that it has been worthwhile and just may have made a very significant difference.

I am very grateful to Astro Brain Tumour Fund for supporting me and Matthew’s Friends for delivering the back up for it, and hope that a body of evidence such as this can build up sufficiently for the medical establishment to consider it seriously.”

Tom Chapman, Norwich, July 2015