My Malignant Melanoma

As part of Melanoma Awareness Month, the Melanoma Research Foundation (MRF) launched Melanoma Tweetments – the MRF’s first social media fundraiser. Their goal is to raise $20,000 a few dollars at a time for melanoma research using only Facebook, Twitter, chat rooms, bulletin boards, blogs and emails.

Since you can chip in using PayPal, you don’t even have to dig out your chequebook, wallet or credit cards.

Let’s show everyone that you don’t have to donate a lot to make a difference in the lives of people battling melanoma.

Getting some new melanoma patient stories up on the site today, and putting pics up on some of the existing ones

"Graduate Bashir Ahmed Mir doused himself in petrol and set himself alight after being unable to find work.

Onlookers doused his burning body in water and he was said to be in a stable condition in hospital last night.

Bashir trained in electro-homeopathy, an alternative medicine which originated in the 19th century.

He torched himself in Srinagar because his degree is not recognised by the Indian Medical Council, which regards the practice as "quackery""

Source

The situation where a patient is on fire is the one example (other than thirst) where homoeopathic remedies actually might do some good. Pouring homoeopathic remedies (water) onto Mr Bashir put him out.

I wonder whether he is being treated using electro-homoeopathy for his burns? No, I don't really. I know he's mad enough to set himself on fire, but he's not that mad.

A fellow cancer patient has written to ask me whether Bernie Siegel is Kosher or Quack. Let's have a look at what Quackwatch have to say:

"Various psychologic methods are being promoted to cancer patients as cures or adjuncts to other treatment. The techniques include imagery, visualization, meditation, progressive muscle relaxation, and various forms of psychotherapy. These techniques may reduce stress, alleviate depression, help control pain, and enhance patients' feelings of mastery and control. Individual and group support can have a positive impact on quality of life and overall attitude. A positive attitude may increase a patient's chance of surviving cancer by increasing compliance with proven treatment. However, it has not been demonstrated that emotions directly influence the course of the disease.

Bernie Siegel, M.D., author of "Love, Medicine & Miracles" and "Peace, Love & Healing", claims that "happy people generally don't get sick" and that "one's attitude toward oneself is the single most important factor in healing or staying well." Siegel also states that "a vigorous immune system can overcome cancer if it is not interfered with, and emotional growth toward greater self-acceptance and fulfilment helps keep the immune system strong." However, he has published no scientific study supporting these claims.

A 10-year study co-authored by Siegel found that 34 breast cancer patients participating in his program did not live longer after diagnosis than comparable non-participants. The program consisted of weekly peer support and family therapy, individual counselling, and the use of positive imagery. In November 1998, Siegel sent a series of email messages to Dr. Barrett (who runs Quackwatch) in which he said that the study bearing his name had been done by a student and was improperly designed."

I think it would be more than fair to say that Siegel is making claims with no scientific foundation, which fly in the face of even his own research. This seems less than kosher to me.

The idea that attitude affects the course of cancer has been scientifically discredited for some time. As cancerbacup point out, whilst it has no beneficial effect the pressure to be positive can become an additional burden for a cancer patient.

There is some evidence that stress might have an effect on cancer progression, but that pressuring people with less sunny coping styles to be positive is stressful for them. This article discusses the research in question.

And then there are all of the studies (including Dr. Siegel's own one) which do not show the effect. Every one of these is a nail in the coffin of claims that it exists. Like so much pseudoscience, the harder you look, the less you see it.

But of course there are people for whom a positive mental attitude works wonders. The loved ones of the cancer patient. Perhaps this is why some of them are such fierce advocates of the PMA. Bad enough that their loved one is possibly dying, but do they really have to go on about it? Let's tell them that if they don't be a bit more positive they'll die sooner, that'll shut them up!

I'm sure that like myself, most cancer patients would like to take as positive and hopeful an attitude to their cancer, its treatment and prognosis as they can from moment to moment, as dictated by their normal coping style.

I'm sure that like me, they are as nice as they can be under the circumstances, and put on as brave a face as they can to protect their loved ones to the extent allowed by the emotional and physical resources available to them.

Having cancer is however a bit of a downer at times. Telling us to pull ourselves together is even less useful than it would be for someone suffering from depression. Telling us to be a bit more cheery on pain of death is less useful still.

Coming back to Dr Siegel, not only has he not proven that his ideas or "treatment" prolongs life, he has not proven that it makes people happier. He has not proven any one of his claims, but has in fact apparently personally supervised someone who has disproved them. He has no evidence to support his claims, but does has evidence to show that his personally supervised programme is worse than useless. Yet he does not retract any of his claims.

Is this fraud or quackery? I suppose that that decision depends on the precise definition of the words you are employing. We can however be pretty clear that this is not acting as a scientist or as an effective medical practitioner.

Labels: Bernie Siegel, Cancer, Clinical, evidence, Love, Love and Healing, M.D, Medicine and Miracles, Peace, promotion, psychologic methods, psychological, quack, Therapy

Experiments in Bedford have shown that laser treatment is surprisingly effective against in-transit metastases. Some people were apparently "cured" completely for reasons they do not understand.

A new review strongly suggests that anti-melanoma vaccines in general haven't worked out, (unlike adoptive t-cell therapy), and that a period of reflection is needed.

This may well be because the tumours can switch off immune responses locally.

Anyone wanting to join a clinical trial of adoptive t-cell therapy could got to Israel. I spoke to these researchers previously, and they are accepting international patients. There is also a second study not yet recruiting in the country.

I got the results of my complaint back from the Chief Exec. of Macmillan today.

He has backed the moderators' dodgy interpretation of the site's rules, and endorsed their decision to ban me. This seems to be based on complaints from just three people!

It's clear that all of the messages of support for me sent to the moderators were just fobbed off with a standard response. If you want to protest, blog on the site about it, writing to the administrators is a waste of time, they couldn't care less what the site users want. How a couple of healthy journalism graduates in their twenties are supposedly qualified to know what mostly far older cancer patients want, need, or should be exposed to is a mystery to me.

The site now comprises largely people posting old jokes, and {{hugz}} fests. Lots of requests for technical information are going unanswered. People are posting questions about supposed new chemo regimes, promoting the quack regimes of struck-off doctors, and remaining ill-informed. They don't need those new rules to make it more child-friendly, it's infantile aready.

I'm not sure that I've lost yet, but I'm pretty clear that it's a rigged game. I am considering my options. All I can do from here is report them to the Charities Commissioners, or go to the press.

Skcin, a Nottingham Skin Cancer charity which seemed to have more or less dropped off the radar has come up with a bit of a propaganda coup with the spoof infomercial "computertan".

Will it work? Is it the right message? I don't know. I really can't guess what the tanning public know and don't know. I don't know what (if anything) they are thinking.

Another poster on What Now has passed on the irresponsible claims of a "Dr" Lodi about chemotherapy.

Legal threats on behalf of Lodi prevent me from commenting further than to say that Mr Lodi is presumably seeking only to promote the oxidative, chelation, homoeopathic, and other quack therapies he offers at his private clinic by his attacks on proven conventional treatments. His motivation is therefore financial.

His profoundly unhelpful and scientifically unjustified claims that doctors would not themselves have the treatments they give to patients were published in "Get Fresh" magazine.

This publication looks like a harmless health and beauty mag, but seems to actually be a slick propaganda sheet pushing the raw food quack diet, and seemingly all other forms of dietary alternative medicine.

This is not a reliable source of scientific or medical information. I wouldn't even trust its beauty tips.

They have been reported to their local trading standards department and the The Medicines and Healthcare products Regulatory Agency for what appears to be a clear breach of the Cancer Act, which prohibits anyone from making claims to be able to heal cancer of the sort they do on their website.

"Dr" Lodi is out of reach in the US, but these muppets are in the UK, and bound by our laws.

There is no alternative therapy which can strengthen the immune system. I'm sorry that anyone has been given false hope, or distressed by the false claims of a quack and a worthless magazine, but that's the truth.

Don't believe me? Ask Paul Merton's wife. Oh that's right, you can't, because she tried to beat cancer with the power of nutrition and positive thinking, and is consequently dead.

I think Gary38 is being a little too kind in describing this as "unproven" on the WN site, when "total and complete bollocks" might be more accurate, but sometimes it's hard to know which description is more convincing to the audience.

Labels: Alternative, Cancer, Chelation, Clinical, Diet, evidence, Get Fresh, Homeopathy, immune system, Insulin, Medicine, Oxidative, promotion, psychological, quack, Therapy, Thomas Lodi, Trial

I see someone has posted the old internet myth about asparagus and cancer on What Now. Perhaps someone at the asparagus marketing board is forwarding this tosh out in time for the fresh asparagus season.

The only reference anywhere in the world to the supposed original author "Richard R. Vensal, D.D.S" seems to be the version of the article which has been circulating the internet since 2006.

There is no other trace in the scientific literature of either the author, or the journal in which it was supposedly published (a now defunct collection of anecdotes on alternative medicine).

However, we can note that if there is a Richard Vensal, a DDS would make him a dentist, rather than a biochemist, a nutritionist or an oncologist.

As someone has pointed out on the board, "It is...a load of bullshit". Ah, le mot juste!

Ooh look, a timely nurse blog on this. Whatever next?

Labels: Alternative, asparagus, Cancer, Diet, evidence, Malignant, Medicine, Nature, promotion, quack, Richard Vensal, Trial

I see someone is promoting a dietary supplement called Biovitali Vitalcells on the What Now board with what looks to the unsophisticated eye like some reasonable scientific evidence. I guess the moderators will eventually get round to deleting this, but wouldn't it be better to have a look at how strong the evidence is?

So let's have a look at that evidence, which is:

1. The product has apparently been patented

2. It is supposedly endorsed by the MD Anderson Cancer Research Centre and the National Foundation for Cancer Research

3. Laboratory trials show it not just to stop cancer and cardiovascular illnesses in their tracks, but to prevent them occurring in the first place, and to extend life by 30%

Taking these claims one by one-

1. Patenting something does not mean that anyone has shown it to actually work. It is a commercial device to prevent anyone copying your work. Having a patent does not mean that something does what it claims. This is no evidence at all.

2. It seems not to be endorsed by either the MD Anderson Cancer Research Centre, or the National Foundation for Cancer Research as is claimed in the manufacturers literature. Both of the organisations in fact have advice against cancer patients and others taking non-prescribed food supplements on their websites, here and here. Neither of their websites make any mention of this product.

3. If the non-peer-reviewed in-house research on the manufacturer's website were true, and applicable to humans, cancer would be no more serious than the common cold. Every single one of the ingredients shows at least 80% tumour inhibition, and together they are even more powerful. But every one of these ingredients is a substance present in normal foodstuffs. How can this be?

Let's see what might be going on. Have a look at the table at the end on lifespan increase. 100% of these mice get cancer during their lives. That is because this strain of mouse has been specially bred to get skin cancer.

The experimenters made getting cancer a racing certainty in their antioxidant experiments by also injecting the mice with a powerful cancer-causing agent, and then constantly feeding them with something which helps cancer to grow.

They have not published their experimental protocol, but let us generously assume it was similar to that used in this real scientific research, despite us not being in a position to check whether they did things properly.

They fed the supplements along with the substance which helps cancer to grow, so that exposure to the promoter and the antioxidants was simultaneous.

Every single one of the ingredients showed incredible levels of tumour inhibition, far higher than that shown by the real treatment linked to previously. If I were a mouse genetically engineered to get a type of skin cancer who happened to have accidentally been injected with a potent carcinogen, and to be unfortunate enough to be on a drip of a drug which promoted the growth of cancer, it seems like this product would be well worth a look. Any other species, any other sort of cancer? Well, we'd have to look at the peer reviewed evidence.

Of course, this product is just a vitamin and antioxidant supplement, which contains the usual stuff, including a number of substances that in real people have been shown promote cancer when taken as a supplement, rather than inhibiting it, such as:

Beta Carotene
Vitamin A
Vitamin E
Vitamin C

Furthermore, the claims that taking combinations of these substances improved their effect is the opposite of what has been found in real studies. Combining beta carotene with vitamin A or vitamin E actually kills more people than either ingredient alone. Source.

There is therefore no chance whatever that the lab results shown in its website have any meaning for cancer patients.

Cancer Research UK advise as follows about all food supplements:

" We need a lot more research in this area before we will know for sure which vitamin and diet supplements may play a role in helping treat, prevent or control cancer. The best way to get the vitamins and minerals you need is through a balanced and varied diet, with plenty of fruit and vegetables. Vitamin supplements don’t have the same benefits as naturally occurring vitamins in fruit and vegetables."

And of course we now know that for those receiving active treatment, antioxidants and vitamin C can block the effects of chemotherapy and radiotherapy. Source.

Someone has suggested on the What Now site that explaining all of the above is unnecessary, and that the last thing the site needs are know-alls telling you all what to think. But here is that same person thanking me for educating them on this very subject after they gave bad advice to someone.

Maybe the site doesn't need know-alls, but know-somethings are useful in situations like this, aren't they? Failing that, the know-nothings could at least not give advice to desperate people in areas they know nothing about.

I see someone has started a new "natural treatment" thread on WN. I'll be interested to see if Gary's polite and sound advice is well-taken. History suggests no, but the site is under moderator lockdown whilst my complaint is being investigated, so who knows?

Labels: Biovitali, Cancer, Clinical, Diet, evidence, immune system, Malignant, Medicine, Melanoma, Nature, promotion, quack, Supplements, Trial, Vitalcells, Vitamin D, Vitamins

I see someone has posted more ill-informed hogwash about the alkaline theory of cancer on the Macmillan What Now board.

This article, written by a Professor of Medicine entitled "Acid/Alkaline Theory of Disease Is Nonsense" covers the area in simple terms. The clue's in the title.

The poster also dips more than a toe into the supposed FDA suppression of simple cancer cures paranoid conspiracy theory.

Ah, it's good to be able to call a spade a spade! If I'd posted this on WN, the admins would have allowed people with no rational arguments to call me names at will, or deleted it, as it contains what they term "emotive language". But this IS hogwash, and indeed nonsense, as Professor Mirkin points out.

Tullio Simoncini didn't have his license to practice medicine withdrawn, and get convicted by an Italian judge for wrongful death and swindling at the request of the FDA. It happened because he killed someone with this quackery.

Why are posters on WN expected to allow people to promote such theories to vulnerable cancer patients with lies? Why do they have to be respectful, polite and scrupulously fair at all times with people who are promoting what amounts to an expensive suicide with misinformation?

Labels: alkaline, Cancer, theory, Tullio Simoncini

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