CANCER Active and The Butterfly effect
“Chris. It’s awful. Catherine’s got a brain tumour.”
Eight words that have changed the lives of so many people.
There is a theory that the effects of a butterfly in Hawaii flapping its wings can be felt in London.
Catherine was just such a butterfly. Aged 22, she had it all. Intelligence, good looks, a degree from Bristol, a great boyfriend and a job at Vogue. And now a terminal brain tumour.
It’s one of God’s little games. Before you come to Earth, everyone is allowed to pick 6 cards from the ‘good things’ pack, but you have to take three from the ‘bad things’ pack too. We’re on the Earth to learn.
But was this Catherine who was learning something, or a trial for those around her? I know that when her mother took her to Brazil to see John of God she opened her appeal to him by saying “I have brought Catherine here to see what you can do for her”. He replied, “No. She has brought you”.
From the very second those original eight words finished, I knew my wonderful daughter was dead. Yet I’m no pessimist, quite the opposite. Within four days the excellent surgeon was cutting into her skull and putting his scalpel into my baby’s brain. Can you imagine the horror? I still remember vividly Catherine in her red baby grow; ‘superbaby’, we used to call her, for she was everything you could want in a child. It was all so very, very hard.
I recently wrote to another Dad who was losing his daughter to melanoma. We’re a special club. Only we know the secret costs of admission.
Yet, I was never sorry for myself, only for poor, darling Catherine. A few days after the operation, the truth was out: Grade 4 Glioma. Look it up on the Internet – it says you’re dead. No hype, no hope. Dad’s like to think they can protect their children from all the world’s atrocities. Now Catherine could read about her own forthcoming death on the web.
The drugs don’t work, the physicians are impotent, the cancer spreads throughout the brain, your intelligence withers and with it your senses. For the last six weeks of her life Catherine couldn’t even see, although she pretended she could so that those around her wouldn’t be troubled. You end up in a hospice lying in your own excrement, thanks to the cocktail of morphine and drugs they give you to take your pain away. If there could be an advertisement for cancer prevention, then this is it. How did my darling baby Catherine feel when she awoke at four in the morning during those first few weeks? Poor baby.
Back in 1972 I’d left Oxford with a biochemistry degree, choosing to go into advertising rather than become a doctor, much to my mother’s consternation. 22 years later I sold my advertising companies and ‘retired’. My interest in ’health’ had never waned so I started my new life by studying nutrition, body energy, Reiki and health and fitness, simply for self-amusement – or so I thought.
Amazingly, about 5 years before my ‘retirement’ an old man in Hong Kong, with no knowledge of me, had prepared my Numerology chart. He predicted that I would become rich and successful in my chosen profession, then have a number of years off, but then I would have a second career, this time in ‘health’ which would bring fame and fortune, at even greater levels than my first!! I’m not sure about the ‘fortune’ part since I have made up my mind to do all of this work for free - let’s just say I’m putting something back into the world after my years of capitalism.
From the moment Catherine’s cancer was diagnosed, my personal gearbox clicked into overdrive. I spoke to experts in London, France and America. The top brain tumour specialist in the world Dr Friedman at Dukes even rang me back after finishing with a patient. But they all said the same: Surgery. Radiotherapy. Chemotherapy. Death.
Ever more determined I started reading avidly, scouring the Internet and talking to complementary and alternative therapy experts. I wrote a diet plan for Catherine, even buying the foods and supplements and taking them round to my ex-wife’s home where Catherine was staying. Catherine embarked on courses of cranial osteopathy and hands on healing, plus yoga and exercise classes. Unfortunately, divorce books don’t have chapters with advice on coping with terminal illnesses in your children. My ex’s new husband told me in no uncertain terms that ‘no one was interested in my mumbo jumbo’.
Catherine’s oncologist was a troubled soul. But how do you fight a war when you have no weapons? Even the mighty Lancet has stated that the drugs don’t work. “What exactly do you think radiotherapy will achieve (apart from numbing her senses)? That US drug you want to try on my baby – isn’t that the one that has just failed its clinical trial?”
By a quirk of fate, friends of friends were in prominent positions at St Thomas’ Hospital so I knew that the prognosis was dire: 6 months maximum. All the oncologist would say to me was, “Don’t worry. We’ll give her a good summer”.
But, then the inevitable didn’t happen. At 6 months Catherine was alive and kicking. And with every three month scan she improved further, easily passing the 18 month ‘record’ that St Thomas’ had for this disease. My contacts said that behind the scenes there was a grudging respect for what I’d been doing. Catherine, herself, was a force to behold. Disciplined, wise, always caring of others, never complaining, a curious mixture of resignation and determination. I only ever saw her cry once, prior to radiotherapy when she simply wanted to know the unknown, “why me?”
We’d learnt so much in such a short time. Indeed, I still learn something new every day. I’m sure all newly diagnosed cancer patients want to find out as much as possible, as fast as possible; especially those with just 6 months to live. Two top Doctors suggested I write down what I had found out. Catherine had left the book reading to me. She found them all too negative, complaining about the drugs companies or the Government, when patients just want to be told information that could improve their personal chances of beating the disease. Who needs politics when they fear they are dying?
Catherine suggested a magazine with usable articles, information and tips on all the things a patient might do to increase their odds of survival. ‘I’m not interested in cancer. I’m interested in living’, she exclaimed. And so I wrote ‘Everything you need to know to help you beat cancer’ and we launched the magazine icon (Integrated Cancer and Oncology News) to try to help people short-circuit the sixth month’s learning curve. We don’t dwell on the problems or the negatives. We try to help people with Intelligent Information – there is so much out there, if you know where to look, have a science degree to understand the technical stuff, and have the time.
Both Catherine and I were becoming increasingly frustrated. If the drugs don’t cure and official medical orthodoxy has so little to offer, why do they so belittle and decry complementary and alternative therapies that show promise? After all, especially with brain tumours where a blood-brain barrier is designed to stop chemicals passing across it, surely, logically, there would be more potential in natural compounds? Preliminary research has shown just such a potential with 6 natural compounds including Coenzyme Q10 and Echinacea. But can the research team get the funding to conduct the required clinical trials? No, of course not. Big Pharma is just not interested – there’s no profit in natural substances. They can’t be patented.
Catherine met Dr Contreras of The Oasis of Hope in Mexico when I interviewed him in Southampton. He told her that B-17 metabolic therapy, for which he has become ‘infamous’, doesn’t work with brain tumours. In reality, he uses the full range of chemotherapy and radiotherapy at his clinic plus nutrition and other complementary therapies. He also pursues new alternative therapies and one, ozone therapy, has started to show promise. But when Catherine told her London oncologist that she was contemplating going to Mexico, his answer was simple. “You know people have gone to Mexico and have never come back”.
Catherine had heartburn. Her oncologist made her list all the supplements she was taking. When she reached B-17 he exclaimed, “that’s it – it contains cyanide”. Not surprisingly when she stopped at her mother’s insistence, the heartburn did not go away. Of course, it had nothing to do with the steroids or anti-fitting drugs, did it?
So just how does this pettiness, this not-invented-here attitude help a cancer patient?
Sadly, flushed with all this success, Catherine returned to the more normal life of a 24 year old, going back to smoking and drinking, and stopping the exercise and supplements. What does go through the mind of a young women when told she has beaten the invincible? The cancer returned.
“We have a triple drug combination called PCV with a 75 per cent success rate” my ex and Catherine were told (I wasn’t allowed to see the oncologist – I was ‘trouble’).
“75 per cent success at what? Surviving 5 years? Surviving 2 minutes? Living until you’re 90? What?” (You can see why everyone thought I was ‘trouble’).
And here I start to show my anger and frustration. And my sadness for the cancer patients of Britain. It is borne out of double standards and unfairness. The very same people who criticise complementary therapies under the banner headline of ‘No Clinical Trials’ should put their own houses in order first and ask themselves whether they really think the clinical trial results they praise so much are worth the paper they are printed on sometimes.
Procarbazine, Carmustine and Vincristine have each been tested individually, and as a triple agent. As a triple agent in 1994 clinical trials with just 24 people 75 per cent did see ‘a response’ of some sort. I won’t go in to what response or how long it lasted, as the data is almost non-existent. (Mean time before progression 15.4 months) Far more worrying is the Cedars-Sinai review on 7 such clinical trials. For example, in another 1996 trial (this time with a massive 32 patients) 91 per cent saw a response at some level. However, as they highlight
29/32 patients responded to the treatment (91%)
9/29 patients experienced hematological toxicity (31%)
10/29 patients had delayed treatments due to treatment-induced toxicities (35%)
Worse, they stressed it was important to incorporate a strict diet regime when using PCV because some foods interact badly with the drugs causing severe health problems; and that the overall health risks in using these three drugs together are not insignificant.
It’s like taking three atomic bombs to kill 100 terrorists hidden in the mountains.
Not surprisingly having seen this data now, Catherine had her white cells so destroyed by CPV that a second round of the cocktail was impossible. Even the injections she was given failed to resurrect them. However, my mumbo jumbo of Cat’s Claw, Echinacea and a little organic iron did bring them back to life, which just meant the experts could try something else on her, this time temozolomide. Same result. No positive effect yet the same destruction of her natural defence system, so she could only have one round.
Temozolomide is a drug about which there has been incredible fuss in the UK after NICE refused initially to allow (pay for) its UK use.
Again, let’s look at the research:
‘At the American Society of Clinical Oncology (ASCO) annual meeting, New Orleans, June 7, 2004 and published in the March 10, 2005, issue of the New England Journal of Medicine, with 573 glioblastoma multiforme patients (one group having just radiotherapy, the other radiotherapy plus temozolomide): After two years, 26 per cent of patients taking temozolomide were alive compared to just 10 percent of those who had radiation only. The median survival in the radiation-plus-temozolomide group was 14.6 months compared to 12.1 months in the radiation-alone group. Progression-free survival - the amount of time before the tumor began to grow again - was 7.2 months in the temozolomide group and 5 months in the other group’.
Frankly, it’s a lot of fuss for a drug that does not work on everyone (actually since 2004 there is a test to determine if you are one of the lucky few – but no doctors in the UK seem to use it) and on average extends the tumour-free period by two months and 6 days.
(And did anyone spot that median progression after PCV was 15.4 months but after Temozolomide was 7.2 months??)
Catherine was now dying. And those around her fervently believe the drugs made it a whole lot worse. How do you fight a cancer when you have no immune system?
I took Catherine to a metabolic typist in Harley Street and paid a fortune for analytical blood tests looking for yeasts, microbes, parasites etc. Incredibly in three and a half years, none had ever been taken by her team of doctors. These showed that she had both a fungus (yeast) and a virus in her brain. “There’s no point in giving her any treatment drugs for these as they’ll probably kill her” said her oncologist, without a hint of irony.
Scott Peck in his book ‘The Road Less Traveled’ said that tackling our problems was how we grow up in life. I know we have all grown up. My ‘ex’ is now a qualified Reflexologist, her husband goes to the gym and health farms. They have new diets and new healthy lifestyles. So much for mumbo jumbo.
Me? Well I suppose I just want to help people give themselves the best possible chance of beating this awful disease. I’ve found out so much, I know where to look: I’ve read the research that experts say does not exist. And I want to pass it on. It’s about fairness, people’s right to know. It’s about telling the Truth! Something that doesn’t seem too common in the ‘Cancer Business’.
I get increasingly angry by the double standards and failings of the arrogant and bombastic medical authorities in Britain. Far less of our cancer patients survive 5 years than those of the US and our Western European neighbours (Eurocare 3) yet get on high horses and we pontificate. Our leading charity says its aim is to get more people on clinical trials than anywhere else in the world. In contrast, MD Anderson Cancer Center (Texas) experts think that ‘All the important developments in cancer therapy are being made in areas outside traditional chemotherapy’.
The World Health Organisation says that Poor Diet, Toxins (including smoking) and Disease are the major contributors to cancer – omitting Mental State, which is now proven to affect cellular hormone and oxygen levels. And during their training exactly how many of our UK Doctors are educated in good diet, toxins in pesticides and toiletries, disease, yeast infections and beneficial bacteria; and mental state??? I can write all their names on the back of a postage stamp.
Then there are the eminent Professors who tell readers of the Daily Mail that there is no research evidence for vitamins, supplements or complementary therapies. THIS IS JUST NOT TRUE. I know that there are even clinical trials – I’ve read them. For example on Vitamin D with breast cancer, vitamin E with Tamoxifen, Beneficial Bacteria with everything from autism to cancer, Yoga, and meditation prior to surgery. Is it laziness on their part? Or mischief? Either way, it does not help the cancer patient. This is the real quackery – it jeopardises innocent people’s lives.
What of the leading UK Professor who wrote a Personal View in the BJM talking about the ‘massive’ £200 million ($375 million) complementary industry and how supplements “should be treated as drugs, for that’s how they market themselves”. Err??? Curiously AstraZeneca paid almost $355 million in the US in settlement of proceedings relating to fraudulent sales of its prostate cancer drug. And I haven’t yet heard of vitamin companies taking Doctors to the dog races, lap dancing clubs, or being accused of bribing nurses as another Pharmaceutical company was found guilty of in the UK. Is this Professor for real? Why, AstraZeneca’s profits were over $8 billion last year. How does that make the UK supplements industry ‘massive’? You might be interested in who provides his University with grants, and who directly and indirectly funds their research programmes. But then again, you can guess.
The Cancer Business (for a business it certainly is) will be over $70 billion in the Western World by 2010. It’s the Great Illusion, the belief that people really are trying to cure the disease. If a pill could be popped tomorrow, that would stop all cancers in their tracks millions of people would lose their jobs, universities could not find funding, major companies would go bust.
Dr John Millward in his book ‘The Treason Within’ talks about a how a doctor’s life has changed over the last 50 years to the point today where they just can’t cope. Yet we now have more Doctors per head of the population than then. What is going wrong? More drugs, more antibiotics, more illness. Could it be that some of these drugs are actually causing the problems? Certainly my recent research studies on beneficial bacteria have turned up a whole new and dynamic area (with clinical trials!) that doctors as yet know little about. The drugs they prescribe flatten our natural immune systems and leave us open to more illnesses in the first place. Fact.
But I’m just being cynical, I hear you say. A pharmaceutical company would never, even unwittingly, create a problem when all their best efforts go in to finding a solution? Where do you want me to start? How about, the very same companies that make the HRT that increases risks of breast and ovarian cancer make the drugs that attempt to cure it. Brilliant. They get paid both ways!
Some of the Trustees of the top UK cancer charities sit on the boards of the companies that make the pesticides or toxic toiletries, or the promotional companies that market mobile phones to children. Vested interests dominate this industry – and with it your health and well-being.
Sometimes I feel very sorry for Doctors. Is it their fault that they are not educated in the things that cause cancer (nutrition etc), that they are armed with drugs that cause side effects and rarely actually cure, have too little time to read (let alone understand) the latest research from Japan on Ultrasound or from Russia on photo dynamic therapy. UK Doctors are falling behind the plot. In response the ‘Powers that Be’ try to exert yet more control: Let’s limit the herbs and vitamins, ban the alternative practices, tell everybody it’s all rubbish, and install ‘dial your medicine’ computer systems in every surgery under the heading of ‘Best Practice’. Just enter ‘Breast cancer’ or ‘Brain Tumours’ and the computer will tell you what drugs to take. That will put Doctors back in control.
But it won’t. Research is already clear that we are losing respect for our Doctors. And if supposedly intelligent, honourable men are not going to speak out against a system that puts profits before patients then no wonder.
Enough - I will not dwell in the trap Catherine identified. I only tell you all this so you will better understand our point of difference. At CANCERactive, in , and on our web site we will not enter into this squabble because it does not benefit the person who matters: You, the patient. We tell our own, positive tale. We provide the very latest evidence-based information from around the world, be it on drugs, vitamins or acupuncture; orthodox, complementary and alternative therapies; all so the patient can make more informed choices, and stand a better chance of beating the disease. I have read two US studies both of which were quite clear: Patients who build a strong integrated programme have a 50 – 60 per cent increase in survival.
The CEO of CancerBACKUP told me that the magazine was brilliant – but ten years ahead of its time. Why? “Well it’s so democratic. It lays out all the information so patients can just pick and choose”. Of course it does – that’s the whole point. It’s what Catherine wanted. The Whole Truth. It’s the patients’ right to know all the options so they can make the best, most informed choices. CANCERactive. Intelligent Information. Independent Voice.
Harvard, Johns Hopkins, UCLA send me monthly e newsletters on their advances with vitamins, yoga, PDT and other complementary therapies. (If vitamin D doesn’t do any good, why has a US company patented a drug of a concentrated form for cancer therapy?) John Boik of MD Anderson has reviewed 4000 research studies and clinical trials on natural compounds and divided them into twenty groups each to tackle a specific step in the cancer process. It’s all ion his book, Natural Compounds in Cancer Therapy - it should be compulsory reading at medical school. As he says, “There will never be a magic-bullet - cancer is much too complicated a process for that”. Tackling cancer has to be multi-faceted.
We are individuals, and your cancer is as individual as you are. Can a 74-year-old woman with breast cancer be treated in exactly the same way as a 34-year old? Of course not. Each needs a tailored programme of the best of orthodox and complementary therapies to suit their personal needs.
So we are now pioneering ‘Personal Prescriptions’ to help patients short circuit the 6-month learning process and give them information tailored to their personal disease and needs.
After just a couple of years, we already have 50,000 ‘hits’ per month on our web site. We are seriously in danger of breaking under the weight of our success. But it’s all worthwhile when someone writes a letter of thanks and another calls you the ‘People’s Champion’. Sadly it is still an uphill ‘battle’. For instance, at two of the biggest hospitals in the UK – hospitals where the patients and nurses love our magazine, it has to be hidden under the counter because (in one a Doctor and in the other a big charity) someone doesn’t like our truth.
Does all this help a Dad who has lost his daughter? No. Try writing a Personal Prescription for a young woman with a brain tumour and you’d know the answer. Does time make it all any easier? A bit. I only cry twice a day now.
I remember just before she died, Catherine saying to me, “Please don’t forget me”. It’s impossible. Try asking any Dad if he could ever forget a daughter?
Try asking our charity members. There is a large group that I know of who are living today, long after their oncologist’s maximum date, because they built all-round programmes to tackle this all-round disease.
The butterfly still flaps her wings.
|Sadly, on October 22nd 2004 at 2.00 am Catherine passed away. The oncologist told her parents that when he first saw her he 'gave' her 6 months maximum to live, as it was a grade 4 cancer then. The most anyone has lived is 18 months and Catherine survived three and a half years|