My Malignant Melanoma

Thought I'd crosspost this from a discussion we have been having on the cancerbacup forum:

"Essiac and Laetrile are useless against cancer. Laetrile gives those who take it cyanide poisoning, though whether they notice the symptoms or not might depend on the dose, and personal susceptibility.

This view is supported by the following reputable organisations, who in turn have these opinions because scientists have tested the agents and found them not to work:

Cancer Research UK

US National Cancer Institute

Cochrane Collaboration

Note that these references should not be believed simply because the organisations publishing them are mainstream. That would be to fall for the same logical fallacy as quack medicine promoters, the "argument from authority". Someone is not right because they have an impressive title, or were nominated for, or even won the Nobel prize. Check out the research backing the claims.

Linus Pauling, (double Nobel Prize winner) for example was a genius in his field, but dead wrong about the effectiveness of Vitamin C against cancer.

Here is a summary of all scientific evidence to date on Laetrile as of June last year.

An interesting article on Laetrile by a doctor, and fully backed by scientific research appears here

To summarise the research listed above, Laetrile is ineffective aginst cancer, and basically has an identical effect to cyanide. Any replies to this post which do not back claims to the contrary with research from peer reviewed scientific literature as I have will be ignored.

As the very first post in the thread says: if I am taking both chemo and Mrs Caisse's tea, who cares which cured me? And indeed who can really tell if it was one, the other, or neither?

That I took essiac or whatever and my cancer got better no more shows that it cures cancer than day causes night. Sometimes cancer just gets better. Our bodies mount a successful last-ditch defence. Just because something follows something else, does not show the first thing caused the second. Only by trying a single agent many times under controlled conditions can we see whether it works or not.

Whilst we are in education mode, we can have a look at the claims made by other posters on this thread which are contradicted by the references I have given above. You can ignore this bit if you like, point by point rebuttals are tiresome to many people:

1. "It may be that B17 is a good one to go for, as the US have banned it." Laetrile is not a vitamin. It is a poison with no effect on cancer progression. It has been banned in the US because of this. This makes it a bad "one to go for".

2. "ordinary processed sugar will kill you long before the cyanide in apricot seeds will." The cyanide produced by laetrile is the same cyanide which is in Zyklon B. There isn't some sort of natural cyanide which is good for you.

3. "The "cyanide content" of almonds, is only released on contact with the cancer cell with which it reacts, and it is not activated in any other situation." In fact the cyanide is released on contact with all parts of the body, especially the digestive system, which is why oral administration is so much more acutely harmful. There is no scientific evidence of any specificity to cancer cells as claimed.

4. "In 1950 after many years of research, a dedicated biochemist by the name of Dr. Ernst T. Krebs, Jr., isolated a new vitamin that he numbered B17 and called 'Laetrile'." Laetrile has been known since 1830. Mr Krebs was not a doctor or a biochemist at all. His father was a doctor, but he was a simple snake-oil merchant. His father the doctor was a quack too. Harold Shipman was a doctor too. Being a doctor isn't an automatic guarantee of probity. Claiming to be a doctor when you are not is however pretty much a guarantee of quackery.

Some other fallacies:

1. "How can an apricot seed, provided by nature, be called a drug" The same way as opium provided by nature might, but I'm not calling it a drug, I'm calling it a poison. The most potent poison in the world, Botulinum toxin is a natural substances.

2. "Dr Budwig was nominated for a Nobel Prize SEVEN times" I could say the same thing of myself and no-one could argue. The committee does not publicise the names of nominees.

I will ignore the meaningless waffle, paranoid hysteria (international criminal conspiracies, please spare us!) and rudeness of the posters promoting quackery. I understand that some people's beliefs are not going to be changed by any amount of rational evidence, and they then resort to bullying tactics.

My opinions are not however beliefs of this nature. Show me a valid clinical trial of these agents which shows that they work, and I will change them. They are opinions backed by solid evidence. The other posters promote irrational beliefs which are flatly contradicted by the same evidence.

So it isn't a question of respecting others, or their beliefs. It a question of not allowing others to promote their dangerous and irrational beliefs with outright lies.

I don't know the other posters from Adam or Eve. I have nothing against them. Their ideas are however dangerous nonsense, founded only on the lies of commercially interested quacks and need to be countered with facts.

I will do this as many times as it takes, but I cannot see how they can come back with anything other than more irrational nonsense. Their claims have no basis in fact, as this post now demonstrates in detail (but only of course to anyone unwilling to believe in a global conspiracy to deny us effective anti-cancer agents by subverting the whole activity of science and medicine)"

Anyone hoping that I will publish comments on this post which amount to testimonials in favour of quackery are going to be disappointed, I'm afraid. We are not in the business of publishing unproven claims which could mislead vulnerable people here. Testimonials are vastly inferior evidence to the scientific studies I have linked to above. Publishing them might make it seem to the vulnerable that there are two sides to this argument, when there are not.

Labels: Alternative, Budwig, Clinical, Diet, Essiac, Forum, Laetrile, Malignant, Medicine, Melanoma, Resources, Trial, UK, Vitamins

Back from retreat.

Latest research supports a genetic influence on melanoma progression here.

The same link also reports on the Dacarbazine/Temozolomide phase 3 trial. There was no difference in outcomes.

One of the Google links on the page also goes to a Swedish company offering "symptomatic relief" of malignant melanoma via homeopathy. What cynical exploiters of the desperate these people are. People should be more careful who they allow to feature in their Google ads.

Labels: Dacarbazine, genetic, Homeopathy, Melanoma, Temozolamide

I'm off for a week later today, meditation retreat in Wales with these people. I've been going since a month or so after my last operation, and I find it a break. My wife does too!

Of course, meditation, even with such a serious and well-qualified group as this does not make any difference to the outcome of cancer. Research however backs my personal experience that it makes it easier to bear.

Cancer Research UK's page on meditation is here

Labels: Malignant, Meditation, Melanoma

I've just been over to the US Melanoma Patients Information Page to publicise the site. Whilst the main site has much good and fairly up-to-date information, I would never send anyone to the bulletin board, as there is a lot of unchallenged mumbo-jumbo on there.

I was particularly disgusted to see communications from the Gerson Institute, and the contact address of their staff on the BB, along with testimonials from the poor mugs they have cheated for their worthless "treatment". Gerson Treatment has no proven effect on MM, even if we are willing accept the clinic's own data.

I also saw much discussion of worthless, and in some cases harmful supplements and vitamins. Patients who had taken them were acting as if they were experts, making claims that they knew the precise temperature at which the enzymes in noni juice which cure cancer were deactivated, when no-one has ever shown that these enzymes exist, or that they affect cancer.

It isn't my job to regulate MPIP, but until they regulate themselves, the bulletin board is a very dangerous place for anyone not possessed of the facts about these alternative approaches.

S

Labels: Alternative, Gerson, Malignant, Medicine, Melanoma, MPIP, Supplements, Vitamins

Trials of Elesclomol ARE up and running in the UK. I have spoken to Cambridge, and they are taking new patients, you can enquire as to your eligibility by calling Jill on 01223 274401.

Newcastle are to start a trial soon, and I understand that the Marsden and St. Georges are also trialling the agent.

There are a number of criteria, but anyone on the trial can have dacarbazine as a second round of chemo later.

Labels: Clinical, Elesclomol, Malignant, Melanoma, Tamoxifen, Trial, UK

Another useful resource found: http://melanomaresources.info/index.html

Labels: Malignant, Melanoma, Resources

There's a new forum for MM patients here. It's a little more genteel than the Scansol Melanoma Board that most people go to (so far)!

Labels: Board, Bulletin, Forum, Malignant, Melanoma, Resources

The promising drug Elesclomol is to go to phase three trials in the UK.

The Newcastle arm of the study tell me they would welcome approaches from suitable patients. I will publish contact details as soon as I have them.

Labels: Clinical, Elesclomol, Malignant, Melanoma, Trial, UK

Site goes live today, we've had everything checked for accuracy, and we have enough content to start up.

Suggestions for how we might improve things are welcome, though I'm going to try and keep it quite small to allow it all to be up-to-date.

Suggestions on how we might "improve" what we say on treatment options by methods not supportable by medical evidence will not be of interest.

Anyone wanting to contribute their melanoma story would also be appreciated.

S