My Malignant Melanoma

Rory's Story Update. A little late due to computer problems....

Labels: BRAF, Clinical, Dabrafenid, MEK, melanoma stories, survivor, Trametinib, Trial, zelboraf

The Ipilimumab Vemurafenib Combo trial we thought would never happen is on the starting blocks...

Labels: Clinical, ipilimumab, PLX4032, Trial, vemurafenib, yervoy

Phase III trial results are in for PLX4032, and they are looking pretty good:  In the study, the risk of death was reduced by 63 percent for people who received vemurafenib compared to those who received chemotherapy. In addition, vemurafenib significantly reduced the risk of the disease getting worse by 74 percent compared to chemotherapy.

Labels: Clinical, PLX4032, Trial, vemurafenib

GSK's "me-too" BRAF drug is showing great promise. Now there are three drugs which look far more effective than the (hardly effective at all) DTIC which has been the only approved drug for so long. May we all live long enough to not have to fear recurrence! Of course, this is all the more reason not to go the alternative route.

In an unfortunately related issue, I managed to get my CT scan booked ahead of schedule, but the oncologist will not move my appointment forward. Must be nice to be so relaxed about the issue.

Labels: BRAF, GSK, Trial

I heard on Radio 4 this morning PLX4032 being described by a reporter as a penicillin moment for MM, but Sir Mark Walport was on hand to more measuredly point out that we need to balance hope with hype, that these drugs are not curative, have side-effects, and so on.


Less measuredly, an attempt was made today to comment on my Tulio Simoncini post by someone who considered David Icke's website a definitive source of medical information. That's as much as I need to say about that, really.

Labels: PLX4032, Trial

Not so long ago, the medical profession was saying that vaccines were universally ineffective against MM, and that researchers thinking of trying vaccines should think again.

But this week the results of the Oncovex vaccine trial have come back very positive.

These are interesting times for MM treatment, with several drugs and now even a vaccine showing great promise.

There is a UK Phase III trial of Oncovex, details here.

Labels: Clinical, oncovex, Trial, vaccine

A fellow melanoma patient asked me this week about the UK trial of a new anti-melanoma drug, a MEK inhibitor called RO4987655. Here's a clinical trial in the UK of the drug. The drug gave complete remission in an animal study, and side-effects are not too bad. It has a similar mode of action to the PLX4032 drug which is giving such hope. Sounds worth a shot.

Labels: Clinical, inhibitor, MEK, RO4987655, Trial

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 have recently had a book called "Anticancer-a new way of life" by a French psychiatrist (David Servan-Schreiber) brought to my attention.

Whilst the author makes many helpful (if obvious) suggestions in line with scientific knowledge, he mixes in with them liberal quantities of reasonable-sounding nonsense.

Of course as a head-shrinker he is no more qualified than a member of the public to write a book on cancer prevention or cure. He makes this obvious in being taken in by alternative medicine propaganda which a "real" doctor would presumably have spotted.

Particularly insidious is the idea that things which might be associated with reducing the risk of occurrence of cancer might also affect the course of disease once you have it. This does not follow.

So let's have a look at a few of the claims he makes:

1. Sugar feeds cancer preferentially

Whilst this may sound plausible, it is unsupported by any scrap of scientific evidence. Source

2. Stress feeds cancer

Whilst plausible for many years, recent detailed research shows this to be false. Source

3. "Environmental toxins" feed cancer

In the sense used in the book, this is without scientific basis, and is actually informed by alternative medicine propaganda- here is a helpful article about this area of misinformation.

4. Genetics do not have an effect on cancer

This is possibly the most ridiculous assertion in the book. Some cancers are solely genetic in origin, most occur as an interplay of genetic and environmental factors. Source

5. Psychological wounds/Hopelessness/Mental attitude feeds cancer

There is no scientific evidence to support this belief, though it is sometimes held by medical professionals on the basis of their own partial recollection of cases.

The latest study showed no association between mental attitude and progression of cancer.

6. There are anticancer foods:

There are associations between eating certain foods and increased/decreased risk of getting certain cancers (not all cancers, note). Source

There are however no known associations between eating certain foods and survival once you already have cancer.

He recommends a number of specific foods:

a. Turmeric

Turmeric does indeed show some interesting effects. Unfortunately the dose required to obtain them in a human being is 110g per day of turmeric powder! Source

b. GreenTea

A recent study of 26,000 Japanese has shown there to be no beneficial effect on stomach cancer from green tea. Another recent Japanese study of 41,400 people showed no protection against lung cancer.

Note that this means that the previous lab scale work which showed promise for green tea is meaningless.

c. Berries

Bilberries have shown some promise in the lab against cancer cells. Source

However, any suggestion that they have an effect on existing cancer in the human body is highly premature.

d. Cabbage family vegetables

There is limited evidence for this, but strangely, the research only provides evidence for a possible protective effect in men. Source

e. Onion family vegetables

It has not been demonstrated to usual scientific standards that these vegetables reduce the risk of cancer.

There is no evidence to support the idea that they affect the progress of existing cancer.

There is however some evidence to support the assertion that consumption of these vegetables is associated with lower levels of cancer, at least in Europe. Source

The evidence for any role for garlic in cancer prevention is weak. Source

8. You can deliberately and helpfully stimulate your own immune system to prevent and eliminate cancer

There is no evidence for this whatever, and it is a cornerstone of a number of brands of quackery. Source

9. Organic food is better for you

There is no evidence for this whatever. Source

10. Meat causes cancer

There is sufficient evidence to associate red meat with bowel cancer. There is no evidence to suggest that any other link exists between meat and cancer. Source

Of course, it is not for me or anyone else anyone else to prove the author wrong. In science, it is his job to prove his ideas right. He has failed to do so.

He has not really even tried, but has just cherry-picked some attractive ideas with little supporting evidence, and lashed them together into a crock of poor quality pop medicine. A crock of something, certainly.

Labels: Alternative, Anti, Cancer, Clinical, curcurmin, Diet, genetic, Green Tea, immune system, Malignant, meat, Medicine, Melanoma, organic, psychological, stress, sugar, Trial, turmeric, vegetarian

New Sites

A new poster on the melanoma board brought a couple of useful sites to our attention:

Of general interest:Melanoma International Foundation

And for those who are pregnant and have MM:Pregnant With Cancer


DCA, Green Tea, Alternative Medicine

I note also a couple of interesting items in today's British Journal of Cancer:

A study of the effect of green tea drinking concluded that it has no effect on lung cancer.

A review of the evidence suggest that DCA may well be a promising broad spectrum anti-cancer agent.

These interest me because they strike at one of the arguments of the "alternative medicine" touts and apologists. Science is studying the seemingly more promising "alternative" agents.

Mostly, as with green tea, the initial promise evaporates. Detailed investigation shows that the apparent correlation between taking a substance and cancer protection or reversal is not true.

Sometimes however, despite there being no possibility of windfall profits (DCA is an old, cheap drug- I could make it in my kitchen), investigations are carried out and prove encouraging. The review itself notes that drug companies are not going to fund trials, and encourages charities to fund them. It will be interesting to see what happens. I am hopeful, as I do not beleive in the paranoid nonsense about the suppression of cancer cures by big business. A trial has in fact already started in Canada.

What also interests me about DCA is that it started being sold on the internet in an unregulated fashion when word first got out. Like everything else, DCA is a poison at too high a dose. The right dose may however kill cancer and leave people alive. Proper trials will tell us.

Labels: Alternative, Canada, Clinical, DCA, Dichloroacetate, Green Tea, Malignant, Medicine, Melanoma, Nature, Trial

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

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

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