Thursday, 20 July 2017

Feeling Like a Human Being Again

Today's blog is from Susan who writes about her experience of conventional treatment for breast cancer and how taking a new approach helped to make her feel more human again. 

I was originally diagnosed with a Grade 2 mixed ductal and lobular carcinoma of the left breast, both oestrogen and HER2 positive. I have a long history of breast cancer in my family, so I wasn’t that surprised to finally succumb to the same thing, particularly having had several years of acrimonious separation from my daughter’s father.

At first, being rather depressed at the time, I didn’t care if I lived or died, but after a few days, I pulled myself together and made a conscious decision that I wanted to live. I have always said that I would never do chemotherapy, but in 2010 when I was diagnosed, I didn’t know where to turn for information about alternative therapies and indeed, I never imagined so much research into alternatives existed. I was quite ‘matter of fact’ about the whole thing but realised much later that I had just gone into survival mode and got on with what I thought had to be done at the time.

I certainly had some very low days, some suicidal days and some total panic days – mostly I felt a failure as a mother, as at the time it was almost impossible for me to meet all my daughter’s needs – she was only 6 when I was diagnosed and still reeling from the family break-down. One day she told me she liked her father’s new girlfriend better than me and that one thing shattered me more than anything, but of course what she meant was that it was more fun being with the healthy new girlfriend rather than the very sick mummy who she had to leave alone every third weekend and much of the time in between.

After that, I started to look for all the information I could and a friend told me about a few good websites on natural and alternative cures and treatments, so I started reading everything I could find and was amazed by it, and so began.

As I didn’t know what else to do and presumed that time was very much of the essence, I initially agreed to go down the mainstream route.  I  had four months of chemotherapy, followed by a lumpectomy, in which a large part of my left breast was removed.  Shortly after this I started radiotherapy for four weeks. I also had Herceptin, an antibody drug, for 6 months, as I was participating in a trial.  Others were on it for 12 months.

The side-effects of the treatment were pretty horrendous, although not quite as awful as I had expected. My hair fell out within a fortnight and I was very sick from the FEC chemotherapy drugs. I turned down extra drugs that I was offered to help with the nausea because I wanted to minimise the overall poisoning of my system and each drug came with its  own complications.

 Midway through the treatment, the chemotherapy drug was changed to docetaxol, which caused me to lose all the hair on my body, my eyebrows and my eyelashes, but on the upside, much less sickness, which was a result as far as I was concerned.

Things got much harder as time went on, as the effect of these drugs is cumulative, and I got weaker and weaker - I could hardly function, which made me feel very miserable and desperate. I was also in a huge amount of pain, as I had very severe peripheral neuropathy in my hands and feet, so the slightest touch was agony.  My fingers split to the bone on almost every finger, which made doing anything at all almost impossible.



It took about three years before I started to feel like an ‘almost normal’ person again – just in time to be diagnosed with a new primary cancer and secondaries in my liver and the base of my spine. So, we began again with chemo and Herceptin and now Pertuzumab as well – another antibody drug, which works much the same way as Herceptin but costs the NHS a mere three thousand pounds every three weeks. However, I had so many unpleasant side effects from this drug that I stopped it just before Christmas.


A New Approach

I decided that a new approach was needed. I first cleaned up my environment, such as disposing of all plastic containers, as these leach chemicals which are oestrogen mimics. I then changed my diet, using organic food as much as possible eating a lot of green veg each day.

I now take a number of supplements as well - astragalus, Siberian ginseng, quercetin, indole 3 carbinol, high dose vitamin D3, green tea extract, curcumins with piperine, cordyceps muchrooms, resveratrol, high dose of vitamin C, vitamin K2, selenium, magnesium, natural vitamin E – must be natural, vitamin B complex and also PectaSol-C (modified citrus pectin). More recently I started taking a wonderful probiotic, which is finally making all the difference to 2 years of diarrhoea. It is in a liquid form and called Symprove.

I also do yoga when I can and walk and get as much fresh air and exercise as I can manage – little and often is better and loads now and then. In general I live my life with as much optimism as I can, which is quite a lot now that I have all these wonderful herbs and therapies at my disposal.

So far my experience is that I am defying the odds of a person who has had chemo twice and has secondary lesions and two primaries. I have been in stable remission for the last year and a half and so far there is not one sign of any cancer anywhere in my body.  I am healing slowly but still better than I could have hoped after the ravages of mainstream treatment. I feel confident that if I stick to the protocol, I will continue to beat the odds.

I spoke to a lovely lady called Patricia Peat who runs Cancer Options and she told me about Yes to Life and how they could help me.  Paying for the many supplements herbal treatments was a struggle and so Yes to Life was a God send for me. I can’t recall now exactly but I know I spoke on the phone to several very kind and patient people at Yes to Life.

I had a consultation with Patricia Peat and found it very reassuring.  I am still doing most of the things she recommended two years later and apparently I am doing much better than the average cancer patient, which I feel certain is not a matter of luck but due to the various therapies which are working their magic for me.

Yes to life has helped me many times with a donation towards my supplements, items like the glass kettle I bought to replace my plastic one and with the cost of my consultation with Patricia Peat.  It made all the difference to me - as single mum on incapacity benefit I could not have paid for any of these things without help.  They have made a huge difference to me – my oncologist told me that only about one percent of patients up and down the country doing as well and I am and I know it’s because of the natural meds that I’m taking.

So far I haven’t been well enough to start fundraising but I’m gradually persuading my friends who run for cancer research, to fundraise for Yes to Life instead and hopefully they will do that soon.

I'd like to attend some of the Yes To Life workshops but they've been quite a distance from me and I’ve been very ill for a long time, as it’s taking an age to recover from the second round of chemo and the allergic reactions to the antibody drugs, but I hope to get to some of them soon, as I am slowly starting to feel like a human being again.

The support I’ve received from Yes To Life has meant peace of mind to me, as I have such confidence that the various remedies I am taking are going to be the difference between life (for more than the prescribed 5 – 10 years) or death. I’m just incredibly grateful for your support and wish more cancer patients would trust that they can be well and live a normal life without chemo – if I’d known in 2010 what I know now, I would have gone down a different route with my treatment and improved my chances of longevity even more.

Friday, 7 July 2017

Surviving Prostate Cancer without Surgery, Drugs or Radiation - by Peter Starr

Peter Starr is a 13-year survivor of a prostate cancer diagnosis without conventional treatment, Founder of Healing Arts Education Foundation and the producer of the DVD set “Surviving Prostate Cancer without Surgery, Drugs or Radiation” www.survivingprostatecancer.org. 

Peter will be visiting the UK in July to show his iconic motorcycle film “Take It To The Limit” in conjunction with a talk about his experiences with prostate cancer at four motorcycle dealers:


19th July -  CMC Motorcycles, 15, Phoenix Retail Park,Watling St, Bridgtown, Cannock, WS11 0BN 

20th July - GT Motorcycles, 10-12 Elburton Rd, Plymouth, PL9 8JQ



In June of 2004, at age 61, I received a diagnosis that changed my life in ways that I would never have forecast in my wildest dream, prior to that day.  I want to tell you my story simply to show that no matter what some well meaning doctors might tell you, their advice regarding a chronic disease such as prostate cancer, might be more self serving that you can imagine and possibly not at all in your best interest. Particularly if you plan on maintaining a good quality of life into your old age.

My working life had been a great mixture of experiences in the entertainment industry as a rock and roll radio disc jockey, a documentary film maker and later a motorcycle stunt rider.  In some ways I had managed to thread my way through some pretty amazing experiences and, except for one major motorcycle accident four years prior to my diagnosis, came through it all relatively unscathed. Or so I had thought.  What I did not know at that time was the lifestyle I had been leading, coupled with some emotional baggage I had been carrying around for several decades, contributed greatly to the chance that I would at some point get a diagnosis of cancer.

My diet was typical Standard American Diet (SAD) consisting of boxed cereals hydrated with 2% milk, the usual fast food hamburgers, processed foods from the supermarket, frozen pizza, more alcohol than I should have been drinking and although not considered obese, I was thirty pounds over weight and exercise, other than what I was instructed to do as part of my rehabilitation from my motorcycle accident, was something other people did.  One might have thought that if I had not been diagnosed with a cancer, I might well have keeled over with a heart attack. To a large extent my diagnosis was a wake-up call in so many ways. One for which to this day I am very grateful, because the alternative might have been to check out permanently and a lot earlier than I would have wished.

Equally important, in terms of the choices I had for my future was the situation brought about by the American Health Insurance system. It was a working (or lack of working) circumstance that placed me to where my health insurance was about to expire. Suddenly I was facing a cancer diagnosis and without insurance to pay for conventional treatments (surgery, radiation etc.). As shocking as it was at the time, and certainly it filled my time with unneeded anxiety, this turned out to be a blessing in disguise and caused me to have to rapidly look at what alternatives were available for me.

There had to be a better way was my predominant thought.  Now it was up to me to find it. I read every book I could find on prostate cancer, and talked to one or two conventional doctors and soon realized that as long as these doctors new each other, they were most unlikely to contradict a treatment recommendation.  One truly had to look beyond the immediate cadre of physicians and find others that truly could give a second or third opinion.

I was in the middle of that process when I read a book by Larry Clapp called “Prostate Health in 90 Days”, and I can honestly say it changed my whole way of thinking.  Through a complete change in his diet and lifestyle, Larry had reversed his own prostate cancer and had not only written a book about it but had also been interviewed on national television. I planned a program for the restoration of my health based on what I had read in his book and my new adventure had begun. Not long into the program I met Larry, and started a friendship that lasted until his fatal heart attack some years later.

After five years of studying everything I could get my hands on that would give me some insight as to how to reverse my prostate cancer, putting it into practice, and witnessing progress to the point where my prostate cancer oncologist said that the only remnant of cancer he saw was likely scar tissue from the previous tumor. He further said, that whatever I was doing, continue to do it because he had nothing in his toolbox that could do any more that I had already done.

About that time, feeling confident about what I had learned and put into practice, I started production of a documentary that resulted in a 3DVD set containing the insight and advice from 56 doctors from 8 countries on 3 continents, including English doctors Julian Kenyon M.D. and Chris Astill-Smith D.O. It took almost three and a half years to complete including a sophisticated piece of animation to illustrate the prostate and it uniqueness, but finally it was brought to market and is available from our website in the US www.survivingprostatecancer.org.  A truncated version was broadcast on American television last year. Although at the moment there is no distribution in the UK, we do ship copies direct from our US office.

I had spent over 20 years making documentary films for television so rather than write a book at that time, I made this documentary.  To me, documentary production felt more natural and furthermore, I reasoned, since men are more “visual” in the way they absorb information, I thought I might get more of them to watch a DVD than I would to read a 300+ page book.

It is very easy to fall in line with conventional thinking, particularly since the business pattern for chronic diseases these days seems to value continued treatment rather than a cure. Also, if one looks carefully at the success rate(or lack of) of conventional treatments, one surely is compelled to question what they are being offered in the USA and the UK as opposed to many other countries such as Switzerland and Germany.

Although all of my motivation to look beyond the norm came from wanting to not be a victim of a treatment protocol that, in my layman’s opinion, was flawed, I cannot leave this article without relating one other reason that I was not about to accept what a doctor might tell me without significant personal research. My father was diagnosed with prostate cancer at about age 69. The reason I am not sure is that when he told me, he was living in Solihull and I was living in Los Angeles and prostate cancer seemed so common it did not seem significant at the time.  My father was given a drug called Flutamide, an androgen deprivation drug that cut he production of testosterone.  At that time the medical standard of care was under the impression that testosterone either caused prostate cancer or exacerbated it. So if surgery or radiation was not to be prescribed, then by all means cut off the testosterone.

One of the direct effects, you will note that I do not use the term ”side effect”, of cutting testosterone, is that the other functions of testosterone, maintaining healthy muscles and bones, are equally affected.  The consequence of which is the skeletal structure becomes brittle and shrinks, and the muscles weaken. The net result is that other reasons cause the death of the patient, such as not recovering from a fall where major bones were fractured, or, the most important muscle of all fails.  This results in the term myocardial infarction being listed as the cause of death, not death by the treatment for prostate cancer, as is the case.  This is what happened to my father under the English medical system but it was not until I was researching my own treatments tat I discovered this.  And yes this provided more ammunition to continue and deepen my own research.

“Surviving Prostate Cancer without Surgery, Drugs or Radiation,” was the result of all that effort.  At that time it was the most comprehensive production of its kind and still provides a very unique education for men and their partners about what I did in my own treatment and giving them confidence to not be intimidated by doctors, who, according to the author Richard Diaz“are prisoners of their education and shackled by their profession.

Hurry Tomorrow - by Paul Phillips

This is just going to be a quick blog entry because I have weird turmoil sloshing around in my gut today like a washing machine full of dirty laundry.  I am due to meet an old friend today and I feel anxious about it.  It’s brought up the question of what I’m doing and where I am.  Do you remember when you were at school and you had some important exams coming up and you hadn’t prepared or revised?  I did that all the time.  I was the one who concocted revision timetables then spent so much time designing them that they were out of date before I started to revise. Then I would rewrite them and waste more time.  I was/am a procrastinator.  Now I have this horrible medical diagnosis and what am I doing?  I’m not even writing a list.  So when I meet my friend and he asks what I’ve been doing there will be a pause and then a familiar reply; “not much,” followed by some justification.

There are at least two schools of thought vying for attention in my head.  One says slow down and just enjoy the important things in life, spend time with close friends and family.  Which I can see makes a lot of sense and satisfies what is considered truly important in life.  Then on the other hand there is the bucket list approach.  Do those things you have always wanted to do, grab life by the short and curlies and live it to the full.  Different horses for different courses.  Or of course you can do a combination of both, weighted in whichever way suits you.
Alternatively you can just carry on as before and ignore the whole thing because it doesn’t feel very real.  I am riding that particular pony – to extend the horse metaphor.  I am 43 and before my diagnosis I didn’t really know what I wanted to do with myself.  I was just plodding on with life, with the occasional bout of angst and unease about what I should be doing.  Since January this year the level of inner turmoil increased massively and caused much consternation but has now settled back down to background noise punctuated by some screams of inner malaise.  Today is a day of inner malaise and so was yesterday.
When I read posts on the Angiosarcoma Facebook page I feel sad and angry for those fellow AS sufferers and it’s a stark reminder that I have the same disease.  Right now it might not feel that way, but I do.  The horror they have experienced is there, maybe already etched into my future timeline.  So the feeling of angst builds.  I can’t do much about the physical reality of having cancer (if I’d have revised science more I could have become a great oncologist) but I can do something about deciding how I manage it.
So that’s where I am right now, still frustrated that I have already missed the chemistry revision that was planned for Wednesday and the English literature (poems of Philip Larkin) that was scheduled for last night and scratched them in favour of multiple episodes of Mad Men.
So what have I been doing?
I have booked a holiday to Greece for the end of the summer.  I am going back to start some work with my former employers next week.  It’s just a few hours a week but at least I will be doing something useful.  I’ve contacted someone this morning about a creative writing course.  I thought it might be enjoyable and a chance to make someone else read my inane ramblings.  As for family, I have driven my poor wife insane.  I have found yet more ways to annoy her that I find entertaining.  We have been able to spend more leisure time together in Bluestones and Somerset on short breaks.  These were welcome bonuses.
I’m going to just follow my gut instinct and just do what I think is right at any given moment.  I cannot predict exactly what will occur or how I will react to it.  I’ll try and remember there is no right way or wrong way to do this or anything else for that matter.
I read this quote by the 16th century philosopher Michel de Montaigne this morning, regarding the feeling that you’re not good enough or the sense that you are a fraud.
“Kings and philosophers shit – and so do ladies.”

Thursday, 6 July 2017

I Should Have Died by Now! - by Elaine Godley

In July 2015 I was given 1 year to live unless I conformed and went through devastating chemotherapy treatment and drug regime.
True to my personality type, I rebelled and created my own regime.
Suffice to say that in 16 weeks I’d beaten stage 4 cancer.  16 weeks from diagnosis to a clear scan is quicker than it takes for some people to be diagnosed.
Initially very reluctant, I did finally agree to a teeny amount of chemo. My research found that for blood cancers, chemotherapy works for 81% of cases (compared to only 2-3% in other types of cancers).  Alongside these few treatments, I also immersed myself into a deep and wide variety of complementary solutions (see earlier blog posts for information and links). My diagnosis was stage 4 Hodgkin’s Lymphoma, which I am convinced was the direct result of previous treatment for breast cancer.
So here I am (July 2017), and what have I learned?  In no particular order, the following is true…..


  • I know my own body better than anyone on the planet
  • It’s vital to listen to your own body and follow what it wants – e.g. sleep, rest, nourishment, exercise etc
  • I am more convinced than ever that doctors don’t have all the answers
  • It’s OK to challenge the medics for better explanations of why certain treatment is recommended
  • It’s OK to carry on taking most complementary solutions during chemo
  • There is no shame in telling people that from time to time, life is a struggle
  • It’s really, really, really important to have balance in all aspects of our lives
  • Having fun, laughing often and having a positive mindset  is essential for recovery
  • Not everyone wants to recover from ill health – that is their choice which I now accept
  • It’s OK for people to make their own choices and it’s not my place to persuade them otherwise
  • It’s OK for me to provide guidance, then walk away rather than follow up and check if people have implemented my suggestions to achieve optimum health and wellbeing
  • The importance of getting on with your specialist cannot be overstated – if you don’t get on, then find another one who is supportive of your treatment choices
  • It’s OK to get  a second medical opinion
  • It’s very important to spend time with people who are positively minded
  • Anything is possible given the right circumstance and mindset
  • Underlying viruses inhibit recovery
  • Any deep, old  emotional stress will slow recovery significantly
  • I am no longer comfortable wearing high heels because of the effects of chemo on my feet
  • When I need to go to the bathroom it’s best for people not to get in my way (another chemo side effect)!
  • Maintaining healthy nutrition is vital to keep well
  • Know your own body and look after it well
  • Adopt a positive mindset
  • Don’t sweat the small stuff – worry less
  • Have more fun
  • Be kind to others
  • Be grateful for what you have and make the most of it
  • Check your diet and levels of nutrition
There are probably more aspects to mention but these are the immediate things that come to my mind.
Overall, I have no complaints. Life is for living and I sure do live it to the full every single day.
What saddens me though, is the number of cancer funerals I have attended in the past year, and the number of people I’ve met who haven’t taken responsibility for their own recovery.
My clear message to everyone is:-
Oh…. did I mention that I also fixed myself of 3 patches of skin cancer on my face this year (basal cell carcinoma)?
No more cancer, no more viruses, no more getting on my soapbox talking about cancer so often.  Time to move on (other than my volunteering time on a cancer charity telephone helpline for http://www.togetheragainstcancer.org.uk)
New business activities and other opportunities are currently surrounding me.  Exciting times are ahead.
Choose a positive mindset and lifestyle, then enjoy it to the full.

Wednesday, 28 June 2017

Phytochemicals in African Plant Extracts Stop Chemotherapy Induced Nail Damage


Men and women receiving chemotherapy endure a host of troublesome side effects that affect their ability to perform simple activities of daily living. One, rather distressing, toxicity is nail damage (Onycholysis), which can affect up to half especially those receiving a commonly used category of drug called taxanes1,2,3. Initially the nails feel hot, sensitive and painful, then ridges appear followed by splitting and separation of the nail from the nail bed. This breakdown of the normal anatomy leads to secondary fungal and bacterial infection that causes further misery and damage.



Current practices:

Supervising oncologists often reduce the dose of chemotherapy when nail damage gets too distressing but this may reduce the beneficial effects of chemotherapy. Oncology nurses advise anecdotal strategies including nail hygiene, wearing nail varnish and avoiding trauma with little or no evidence of success. Cooling the nails bed with iced water helps to reduce its severity4. Commercially available cooling gloves are available but they are not particularly popular among UK chemotherapy nurses as they cover the veins of the hands and prevent assessment of the patient's extremities4,5,6.

Rationale for the UK Polybalm study:

A trial development committee was formed with phytochemists, herbalists, patients, oncologists and oncology nurses from Bedford and Addenbrooke’s Cambridge University Hospitals which worked in liaison with the National Cancer Research Institute’s lifestyle and behavioral change work stream. The bioactive pathways of a host of plant extracts were scrutinized from published laboratory and clinic data.  With an understanding of how chemotherapy damaged nails it soon became clear that a number of natural plant phytochemicals, particularly the polyphenolic acids and polyphenols have biological properties which could protect the nail bed from chemotherapy if applied locally 7,8,9,10,11,12. The full evidence review for the specific essential oils and waxes chosen for this study and entire protocol itself can be found on the trials website (cancernet.co.uk/polybalm.com).  In summary these include:
  • Anti-inflammatory
  • Analgesic
  • Anti-oxidant
  • Enhance DNA repair
  • Anti-bacterial and anti-fungal
  • Moisturising and hydrating


 What is polybalm?

In contrast to the ingredients of conventional cosmetics, the UK manufacturers of polybalm only used unrefined oils, which were cold pressed or gradually warmed avoiding damage to their phytochemical content. The bases of extra virgin olive oil, organic beeswax, unrefined organic cocoa and shea butters. The essential oils included Gaultheria procumbens, lavandula officinalis, eucalyptus globulus, tarchonanthus camphoratus. They wanted to avoid any potential iritants so excluded any man made chemical such, preservatives, colours, parabens, sulphates or petroleum.


The UK Polybalm trial:

60 men and women receiving chemotherapy for breast or prostate cancer were randomised to apply either a simple petroleum moisturising balm to their nail bed 2-3 three times a day or the investigational balm now known as polybalm. None of the patients, doctors, research team or statistician knew which balm was assigned to which participant. The health of the nails was measured by 4 independent tools. Two completed by the patient concerning severity of symptoms and how they affected QOL and two by physicians assessing the physical disfigurement. 

Results:

There was a 180 fold difference in patient recorded QOL and an 11 fold difference in physician recorded disfigurement but both differences were highly statistically significant in all scores (unpaired T-test p<0.00001). There were no reported allergies or adverse events related to either creams. Only patients in the polybalm group had some nail changes also suffered from other severe chemotherapy complications including neutropenic sepsis, diarrhea and peripheral neuropathy13.

Conclusion:

The polyphenol rich essential oils and plant-based waxes in this nail bed balm profoundly reduced chemotherapy related nail damage and improved nail related quality of life compared to a plain petroleum based balm. The significant improvement in nail related quality of life will be welcomed by patients suffering this unwelcome toxicity which would otherwise significantly effect up to half of people receiving chemotherapy.


Footnote:

This study was audited to comply with good clinical practice guidelines and Cambridge University Central Research Ethics Committee approval. It was registered with the Health Research Authority. The balms were made specifically for this study by a UK registered manufacturer and European product cosmetic test were performed to fully comply with European Union Cosmetics Standards (ref: 76/768/EEC). No member of the research team received payments to recruit patients into the study. Although this was a scientific evaluation, the FDA and MHRA classed them as a cosmetic, so cannot be recommended for any medical condition or claim health benefits. The investigation balm should not be considered as an alternative medical treatment and should not be used against medical advice. The protocol was in the public domain and the balm, named after the clinical trial, is now distributed by an independent organization (polybalm.com) that has no connection to the trials unit.

References:

  1. Minisini AM et al: Taxane-induced nail changes. Ann Oncol 14:333-337, 2003
  2. Battegay EJ: Angiogenesis: Mechanistic insights. J Mol Med 73:333-346, 1995
  3. Wasner G et al: Docetaxel-induced nail changes: J Neurooncol 58:167-174, 2002
  4. Ding & Thomas: Cooling for chemo onycholysis. Clin Foc Can Med 2(1):18, 2010
  5. Scottie: Frozen glove to prevent docetaxel onycholysis. JCO 23(19) 4424, 2005
  6. Ishiguro: Freezing for docetaxel nail toxicity. Sup Care Can 20:2017-2024, 2012
  7. Delaquis: Antimicrobial activity of plant oils. Int J Food Microbiol 74(1):101 2002
  8. Smith-Palmer: Antimicrobial plant oils. Applied Microbiol 26(2):118-22, 2002
  9. Baratta: Antimicrobial & antioxidant essential oils. Flav & Frag J 13(4):235, 2001
  10. Radava. Herbs protect cells from UV radiation Pharmacogn Rev. 2011 5(10): 164
  11. Mao-Qiang: Topical plant extracts & inflammation. Evid Based Com Alte Med. 2012
  12. Baliga: Chemoprevention of botanicals. Phytochem Photobiol Sci. 2006, 5(2):243.
  13. Thomas R et al. A double blind RCT of a polyphenolic rich plant balm for onycholysis – the UK Polybalm Trial. 2017 ASCO Proceedings Abstract:101003