Alternative treatments. ..what's the harm?!

[Apricot77]

Chris beat his own cancer through nutrition. This is his response to an article from Cancer Research UK.

youtu.be/FtMPbHHGGzc(Not working as expected?)

[AussieNeil Partner Administrator]

Nutrition is very important and CLL is often a wake up call to improve our diets and thereby our health and quality of life. But don't expect it to cure your CLL.

Per our community guideline 29: Please do not promote the use of alternative treatments: healthunlocked.com/cllsuppo...

This video provides a good reason why this guideline is in place, per my responses to some key points raised in this video.

1) Members of this community are able to be informed from the regular posts from the latest research and other patients undergoing treatment.

2) Natural is better; implying natural and non-toxic? But natural remedies in concentrated quantities sufficient to provide a benefit can be toxic enough for patients discontinue treatment. For example, the CONCLUSION from the Phase II EGCG trial; the most successful alternative CLL treatment that I know of — Daily oral EGCG in the Polyphenon E preparation was well tolerated by CLL patients in this phase II trial. Durable declines in ALC and/or lymphadenopathy were observed in the majority of patients.

Toxicity and Tolerability: Twelve patients discontinued therapy early: 9 experienced an adverse event and 3 progressed.

ncbi.nlm.nih.gov/pmc/articl...

3) Case studies can certainly identify worthwhile avenues for further research, but the only way to achieve an unbiased comparative assessment is by a clinical trial with sufficient trial members for statistically meaningful conclusions. It doesn't matter whether what's being assessed is 'natural' or a pharmaceutical drug, we need a reliable methodology to draw out the unbiased truth. (This not to say that clinical trials can't be rigged, but provided a trial is correctly structured and run, clinical trials have a proven track record of identifying what and what doesn't work.) (Interestingly the presenter obviously recognises that clinical trials are the best way to prove a cure, arguing repeatedly that they are impossible to do for nutritional treatments. - See point 7.)

4) Are conventional cancer treatments really failing? How about some facts? While I don't know the statistics for other cancer treatments, I do know that for CLL, we are seeing fairly consistent improvements with new drugs and the replacement of chemo drugs with non-chemo drugs that work far better than chemo drugs for patients with 11q and 17p deletions.

5) To quote "Why would you use that example as if it is happening all the time?" Most of this talk uses exactly this technique. Without statistics, we just have a war of words and no one is any the wiser. This is why this community aims to provide evidence based information that members can trust.

6) Where's the evidence? There's a large body of evidence based on 'data mining' correlations between different diets/lifestyles and the relative incidence of a whole host of health conditions, including cancers. (This is how the smoking/lung cancer connection was discovered!)

7) There is nothing stopping a group of concerted patients from raising the funds for a clinical trial for a specific clinical trial to test whether a case study has highlighted a potentially worthwhile alternative treatment. This is how the above referenced Phase III EGCG trial happened - from funds raised through CLL Topics/Updates!

8) "You can't throw all alternative, natural, non toxic treatments out the window because they didn't work for one guy." Likewise you can't do that for conventional treatments either!

Neil

[Leshere in reply to AussieNeil]

Well said Neil: this is some bloke in the States having a rant and not offering any robust evidence.

As an overall view there is the world of difference between supplementary and alternative. I will supplement any standard treatment with something if it seems useful and shows a reasonable chance of not causing unexpected harm. Les

[MF79 in reply to AussieNeil]

Thank you Neil, couldn't put it better.

[Fiona2014 in reply to AussieNeil]

Neil, thanks for for speaking to the above guideline and following points. As a new member, I feel reassured that discussions and recommendations are spoken from an evidence based perspective or alternatively " the narrative" of one's experience.

[Bubnojay]

Watched for a while and got bored with this guy who looks like all the other types on the web who eventually get to the point.

I might have watched longer if he had first provided evidence of what cancer he had and evidence that he was cured by whatever he was going on about. Could not be bothered to see where his diatribe ended.

I have said it before so apologies for repeating it. When I was diagnosed with a melon sized ovarian cancer would it have been wise to tell the surgeon don't cut it out, I'll just alter my diet and take supplements. I don't think so.

Bubnjay1

[IsabelleAndJohn in reply to Bubnojay]

The proofs of the Type of Cancer he had and the evidence he was cured are available on his Website, copies of his medical records are shown on some of his videos. it is absolutely fine not to agree with someone, but to throw such comments about him like that, without full knowledge, is neither smart, nor respectful, nor kind. Chris has dedicated years of his life to try and inform and help others, and for this alone he deserves some respect... I am sure that if he was invited to comment on this forum, he would do so in a heartbeat, and share the hundreds of stories of people he met, who achieved total remission through diet and lifestyle changes, this could prove a much more productive approach... MeFinks...

[Bubnojay in reply to IsabelleAndJohn]

Hi Isabelleand John

I understand your point of view, but there are so many types of this presentation, and had the evidence been presented up front it would have made a huge difference to my continuing to view it. Perhaps my opinion is coloured by the many videos I have seen in the same vein over the years.

Sadly none of which bore out the claims of the facts presented, I wish they did. Below I read that there was surgery involved originally, I think this has a bearing on the issue.

Of course I wish him well, as I do all who suffer with the many cancers, many of whom I meet regularly.

Best wishes

Bubnjay1

[IsabelleAndJohn in reply to Bubnojay]

No worries...

If you ever get a few hours to yourself, I would highly recommend an amazing book by Dr. Greger, called "How Not To Die". It is a great, great, great book (I have just ordered 20 copies of it to gift to all my loved ones at Christmas, that's how strong an impact that book has had on my life).

It has a whole chapter dedicated to Blood Cancers.

You might like the fact that the statements and recommendations made in that book are supported by thousands of medical research papers, the references of which are all available within the book.

If you ever decide to read it, I would love to know what you made of it...

Shared with nothing but the best of intentions for all, and always xx

[bantamsheffield]

Oh!! It's on the 'Interweb' "It must be a fact" WWW - What Went Wrong.....

[serendipity1]

I love natural things and the impact it has on our bodies and minds etc. If we were in the watch and wait I know I would be trying many things. I purchased a book around 4 years ago and it was called the Rainbow diet. I changed my life since reading that site and the book.

I went on this Chris beat cancer site, think he had colon cancer, had it cut out then went this route. He has done well to be clear since.

Steve Freier is the only one I could find on the net who claims he cured his CLL, he did do treatment first, but think he disliked it. He changed his life dramatically. He has two sites, this one

cllhealed.com/

and then there is a link of his new one.

Whether is natural ways, clinical ways with reading, we will never be 100% sure on what is true and what is not. Mayo clinic have done testings on green tea with people in the W&W early stages and it was beneficial, they used matcha as it was more pure.

Oh also, my friend has always has stomach issues, had tests for all sorts, allergies etc. Saw a doctor who was covering, he said lets see what blood type you are, he then gave her a list of food not to eat. She went home and did a google, read about her own blood type and there was a list of foods people with this blood type should never eat, she tried it, 3 years later never had stomach, digestion etc issues. We did this with my partner and his list of foods always made him bloated, so we tried it two weeks ago and no bloating. Crazy hey, we just did this for fun, yet it worked lol (maybe people knew about blood and food and we were the only ones who didn't)

Good luck with trying this method Apricot77 keep us up to date

[AussieNeil Partner Administrator in reply to serendipity1]

Per the paper I referenced, the EGCG preparation was not Macha tea (which I understand does provide higher amounts of EGCG) but Polyphenon-E, a pharmaceutical grade extract from green tea: en.wikipedia.org/wiki/Polyp...

Kind of puts the lie to claims from alternative health proponents that you can't patent natural substances, as does the fact that Mayo Clinic have also taken out a patent on using EGCG with other drugs to control CLL and other blood cancers...

[serendipity1 in reply to AussieNeil]

The matcha one was one I studied years ago, but read an article not long back how it can in some cases kill or prevent the cells from growing etc, read an article on VitA as well few years back. Always known about seeds, grapes, apricots, etc but where we are right now, treatment is needed and it's the route we have to go.

However love natural treatments, foods etc, had a verruca once, remember my sister having one, applying the treatment and filing it down and she was in tears (I have no pain threshold) so I was like hell no lol so did research, banana skin and duck tape, tried it and it went and bonus no pain lol

I respect anyone who wants to try which ever path is right for them. More so since the Lung cancer, knowing what I know now, wished we had done the natural treatment, would it have cured, no, quality of live and better memories yes. Personal choice

[Cllcanada Top Poster CURE Hero in reply to serendipity1]

I had a 'natural' treatment...extract from the Madagascar Periwinkle... lovely pink/purple flower... Catharanthus roseus

kew.org/science-conservatio...

The drug name is vincristine it is a plant tissue extract... it fried my motor functions and caused more permanent damage than CLL or diffuse large B cell lymphoma... combined!🙁 However it has done wonders for childhood leukemias.

Natural means little frankly... your body sees everyting as a chemical compound.

~chris

[serendipity1 in reply to Cllcanada]

Sorry to hear that of your experience, I never touch natural remedies, it's something which I am not confident in really. I know the Chinese remedies etc are highly thought of, but prefer natural treatment through food etc.

natural to me means, food which organic and animals fed on grass, will we ever get 100% natural probably not, but as close as possible is good for me, also love my seeds, nuts etc lol

I shall read that link of yours though, as it is something I have never heard of

[francc in reply to serendipity1]

Have you heard of the placebo effect? It has been on the medical news reports lately reporting on actual clinical trials...many of the trials involved success with stomach issues. It is amazing! This could easily be the reason for the bloating subsiding.

[Newdawn Administrator]

I'm treading carefully on this touchy subject because I've been 'savaged' in the past for suggesting caution should be exercised with a certain 'oil' with impressive but scientifically unproven results.

I remain very open minded on the use of complementary therapies as described by Les above but 'alternative therapies' as a totally exclusive treatment regime worry me.

I'm firmly of the belief that the root of most health evil lies in inflammatory diets high in carb and sugar fuelled by stressful lifestyles and the truth is if I'd known now what I knew then, I'd have changed my life dramatically many years ago. But I'm not a vegan, mung bean kind of girl so I have to be realistic and true to my life and my environment.

I've read the story from this guy Chris many times. I've just looked at his blog and it goes on to feature individuals 'cured' of even stage 4 breast cancers and melanoma with everything from horseradish root to poo transplants!

Whenever this subject surfaces, people can get bruised because they believe the medical Luddites come out in force to dismiss what they can't comprehend. The pharmaceutical conspiracy theories usually accompany this. As a site it would be totally irresponsible to promote or encourage what cannot be tested or has no evidence based corroboration. Neil is quite right in saying that all we are left with is a war of words where anecdotal testimony cannot be promoted. However, I'd never try to deter someone who has a firm conviction from following their belief. I'd just urge extreme caution and hope that they too can be open minded enough to accept when 'natural methods' fail to work. We are all fighting the same foe in the end.

I'm not a scientist so I have no option but to rely on evidence based results and I know this irks some members. It doesn't however mean closed minded, it simply means deeply cautious about sacrificing my most precious commodity (myself) to treatments and therapies that have no substantiating data, trials or measurements that I can rely on.

Regards to all,

Newdawn

[virdieblue]

At first, we all want to believe that there is a natural, easy solution to our little bit of hell. But as time goes on we progress as determined by our genetics.

It's heartbreaking, we want to find that magic bullet that will make our CLL vanish.

Virginia

[deveritt]

I have nothing against complementary practitioners, and have benefited from certain ones myself. And although I don't like the vitriol thrown in their direction ( sciencebasedmedicine.org/ch... ) neither am willing to go along with unsubstantiated claims in a 'belief' kind of way without more evidence.

I have seen this kind of evangelistic self-promotion in other fields, and it tends to follow a similar pattern:

* person has a major life event

* person gets through said event without professional intervention

* person attributes survival/success to whatever they did at the time

* person attacks critics and turns them into 'the enemy'

* person forms a movement around their own singular experience

Chris has gone to the next level by turning his epiphany into a profitable business and charging $100 per hour for consultations. That alone puts me off.

I'm not against complementary therapies or healthy diets at all, and really dislike the profit-driven side of the pharmaceutical industry, but there needs to be a balance and a dialogue with exiting practice, and a willingness to be subjected to proper analysis and tests - after all, if something turns out to work, we need to prove it, test it on a wider sample and spread the good news.

[AussieNeil Partner Administrator in reply to deveritt]

Thanks for posting this link and sharing your views. Most importantly, your linked article outlines why Chris's 'cure' - even if it works for some people with solid tumours, just won't work for CLL. As Bubnojay pointed out above, Chris doesn't disclose without deeper research into his history, that he had his solid bowel cancer surgically removed, presumably along with nearby nodes to which the cancer had spread, before starting on his improved nutrition. With CLL cells throughout our body (with the exception of our corneas), it's just not possible to excise a CLL tumour. (Interestingly, it is possible to cure SLL (the nodal form of CLL), if the SLL is caught early enough to be limited to a few nodes and the cancerous nodes given radiation treatment!)

Anyone taking the time to read the Science Based Medicine article will quickly learn that the chemotherapy Chris refused is recommended as 'adjuvant therapy', basically mopping up any cancer cells that may have escaped the surgeon's knife and thereby reducing the chance of the cancer returning. (Incidentally I have a friend who recently took the same path as Chris, eschewing chemotherapy after cancer surgery, but she too is doing well - so far.)

Nice summary of the typical evangelistic self-promotion pattern!

Even though I hadn't come across the word 'woo' before, I felt it was dismissive and perhaps a bit rude, until I read the definition: rationalwiki.org/wiki/Woo 'Woo is a term for pseudoscientific explanations that share certain common characteristics, often being too good to be true (aside from being unscientific). The term is common among skeptical writers. Woo is understood specifically as dressing itself in the trappings of science (but not the substance) while involving unscientific concepts, such as anecdotal evidence and sciencey-sounding words.'

I'll let others read and make their own judgement over which site is vitriolic.

Neil

* I fixed the link so it now works by including spaces between the brackets and the links; HU doesn't link non-space characters before or after links)