My Malignant Melanoma

Kowabunga!

2010-03-04T10:10:00.001-08:00

A surfer has written in to say "How many patients die under the care of traditional doctors every year? If you figure up that total, you will see how ludicrous your accusations of Dr. Hamer are"

I'm glad you asked, dude. Cancer is, like, 65% survivable by conventional medical treatment. "Dr" Hamer's patients all die. Every freakin' one. Totally! Knarly!

Of course the big question is not how many of a doctor's patients die, but how many times they are convicted of killing people. That's one to Hamer vs. zero to the average doctor.

Best stick to surfing, bro.

Lodi et al- would you buy a used car from this man?

2010-02-28T00:53:00.000-08:00

My Thomas Lodi post just keeps on generating ill-informed comments from altie morons. The latest tells me to read a couple of airport paperbacks called The China Study and Living Foods for Optimal Health (whose author is pictured) which are supposedly supporting evidence for a statement that Lodi is successfully curing cancer.

Sorry, these publications provide no supporting evidence for anything. They do nor even support their own conclusions.

They are baseless propaganda from vegetarianism/animal rights and naturopathy/macrobiotics activists respectively.

Their authors are simply plugging their self-interested agendas with no regards for the facts of the matter. These are political tracts, not valid sources of unbiased information.

Vegetarianism and macrobiotics (despite their repeated claims to the contrary) are not associated with lower rates of new cancers, neither are they associated with improved survival of cancer. The founder of macrobiotics, and several of his high-profile supporters themselves died of cancer.

Naturopathy is systematised quackery, whose "qualifications" are according to Quackwatch fiddled so that no-one fails. A "doctorate" in "naturopathic medicine" is not therefore even the equivalent of a first-aid certificate, as some people fail their first-aid certificates.

Lodi isn't curing anything other than any problems with his bank balance which might remain after his unsubstantiated past high-spending habits. As far as scientific evidence is concerned, he has published nothing at all of which I am aware.

A combination of mistaking wishful thinking for fact, and a lack of understanding of what constitutes valid evidence is seemingly the reason why so many are so confused. I'm not going to be cooperating with anyone's efforts to spread baseless propaganda for quacks or their fad diets to desperate people. No amount of airport paperbacks stacks up against a single peer-reviewed scientific paper.

Comments claiming miracle cures with no scientific evidence to support them are not going to be published on here. The comment has however persuaded me to revisit these baseless quack diet books for further comment at some point in the future.

Cancer Research UK Patient Involvement Day

2010-02-27T07:59:00.000-08:00

Cancer Research UK is planning a patient involvement day in Birmingham in April to support our current policy work on promoting earlier diagnosis.

The Policy Team at Cancer Research UK are looking for people to take part in a discussion about how people are diagnosed with cancer and what we could be asking the Government to do to improve earlier diagnosis of cancer.

Cancer Research UK need patients and carers who live within easy travelling distance from Birmingham who have experienced the diagnosis of cancer in the last few years to come and share their story at a day-long event on 21st April 2010.

If you’re interested please email patient.day@cancer.org.uk or call 020 7061 8360 to get more information on the day and how to apply.

Staging of Melanoma

2010-02-27T05:07:00.000-08:00

Just heard that the evidence based gold standard AJCC melanoma staging system is to be updated soon. Details here.

Mitotic rate is to be used to differentiate between stage 1 melanomas, and all lymph node metastases, including those only detectable by immunohistochemistry are all going to be considered to make a patient stage III.

Tullio Simoncini

2010-02-24T23:40:00.000-08:00

Someone has written to me to suggest that the delusional quack Tullio Simoncini, convicted of the unlawful killing of one of his patients is "200% correct" in his assertions that cancer is a fungus. Here is the story of one of his patients. Judge for yourselves.

The Budwig Diet

2010-02-14T04:22:00.000-08:00

Over on CRUK's cancer chat site, there's a muppet who is plugging the Budwig Diet to cancer patients. Here's what I had to say to him:

"A quick glance round the internet shows that people are using this diet instead of radio-and chemo-therapy on the advice of morons like you.

Thinking that the papers you linked to in some way supports the Budwig diet only confirms your scientific ignorance. None of the papers are about the Budwig diet at all.

As I said, science deals with evidence, and there is no evidence whatever for the Budwig diet. There's nothing more to say from a scientific point of view. I have an open mind-show me some evidence. Believing the unsupported word of an internet time-waster like yourself isn't open-mindedness, it's stupidity.

Linus Pauling's ideas on dietary Vitamin C and cancer were tested and are nonsense (We might note in passing that he actually died of cancer)

The research you refer to is about intravenous vitamin C rather than dietary Vitamin C, in mice rather than people, and is far from conclusive. Linus Pauling won the Nobel prize for work on the nature of the chemical bond. He had neither training nor any research background in Medicine, or any biological science.

Your logical error is called the appeal to authority. Linus Pauling also had strong political opinions. Should we remake society in line with them because he won a Nobel Peace Prize? It does not logically follow that being right about chemical bonds makes you right about cancer, politics, or indeed even reliably right about some other aspect of chemistry. (Even Budwig's supporters claim that she was nominated for the peace prize rather than the prize for medicine, incidentally)

Bring some real evidence to back your assertions, or shut up. Since you clearly wouldn't know evidence if it was tattooed on your forehead, it's going to be a long wait. That's evidence that the Budwig diet is helpful for the outcome of all cancers which I'm talking about, as this is the claim that is being made.

The most impressive of the papers you linked to concludes that one component of the Budwig diet MIGHT be worthy of further investigation for some prostate cancer patients.

1. It does not study the Budwig diet at all, but a simple low-fat diet with flax seed oil. Budwig made strong claims that organic flaxseed oil must be mixed with organic cottage cheese to be effective, and that either component taken separately would have the opposite of the desired effect. The study you quote does however pertain to this claim. It tends to disprove it, as no excess deaths were recorded in the patients as would be expected from Budwig's claims.

The Budwig Protocol is actually a complete lifestyle, which besides flaxseed oil/cottage cheese includes a number of elements. It includes a vegetarian diet, flaxseeds, fruit juices, vegetable juices, sauerkraut, sunshine, "emotional and spiritual peace" "stress control", "avoiding negative energy" from a variety of sources in synthetic clothing, bedding, etc. in your immediate environment. and so on...

2. It only studies one sort of cancer. Things which help with one sort of cancer can harm in the case of another. For example testosterone is required to allow prostate cancers to grow, but it may inhibit breast cancers.

3. It does not study the post-treatment period when people seem most likely to be conned into the Budwig diet.

4. It does not conclude that the diet helps in any way, but that it MIGHT be worth looking into. Since the paper dates from 2008, it seems that they have not cured cancer in the meantime, or I would surely have heard about it.

5. The study does not actually look at survival or any real-world end-point at all, but biochemical changes which they believe might be associated with a better outcome.

Advising anyone to even consider the Budwig diet on the strength of this research is highly irresponsible. But of course your ideas on the Budwig diet come from internet quack sites, not scientific or medical research. These are the only places where this diet is promoted. You are just parroting quack propaganda.

Might I suggest that you, and anyone else like you, who want to play scientist/doctor based on tripe they read on the internet, who think that any study of a field implies scientific endorsement, and doesn't understand what the resulting papers mean refrain from giving unqualified medical advice to cancer patients?"

Obviously it would be better if people like this were split, salted and nailed to a fence, but we do what we can.

Turmeric II- this time it's personal

2010-02-09T06:59:00.001-08:00

I was recently showered with increasingly offensive emails by someone who thought that turmeric can cure cancer, and that I was highly irresponsible to say on this site that it doesn't.

So I had a look to see if any new evidence had come to light since I last looked into it. No new favourable evidence, but as ever, even more hucksters plugging alternative medicine. No wonder people get taken in, if they don't understand that being on the front page of Google isn't anything to do with accuracy of content.

CRUK have a page on turmeric, which I referenced in my previous post on the subject. It says that there is some anti-cancer activity in the test-tube, but that trials showed that it is so poorly absorbed from the gut that it is useless for anything other than gut cancers. It also cautioned against internet turmeric supplements, which have been shown to contain dangerous drugs.

Pretty much everything, including paracetamol has anti-cancer effects in cell culture or lab mice. It doesn't mean a damn thing.

The ranter also insisted that if he spoke to his doctor as I suggested, that his doctor would be struck off or even jailed if he were to agree that turmeric cured cancer. There is no conspiracy to suppress the truth about cancer treatment, other than the one perpetrated by the commercially motivated snake-oil merchants. You've been had, friend.

New Stories

2010-01-25T02:14:00.000-08:00

We have new melanoma stories from Caroline, Tessa and Rory. Stories from other melanoma patients are most welcome.

Sunbed ban- more to MM than tanorexia

2010-01-13T03:20:00.000-08:00

A ban on under-18s using sunbeds moves closer in the UK, with government support, as reported in the media. This is a good idea, backed by CRUK.

It would however be nice if they could do a bit more to make the public aware that whilst it may be true that UV causes non-melanoma skin cancers, the evidence that it causes melanoma at all is not that conclusive, and the evidence that it causes all melanoma is entirely absent.

Being told your cancer if a lifestyle choice is bad enough when if was probably caused by some "choice" like smoking, but when it is clear that a lot of melanoma is NOT caused by UV exposure, melanoma patients can get the message that they deserve to get cancer.

I've never been on a sunbed or deliberately sunbathed in my life, just like many MM patients.

An Oasis of Healing

2010-01-09T06:13:00.000-08:00

After hearing about the legal threats made by "An Oasis of Healing", seemingly on behalf of its founder Thomas Lodi, a fellow blogger thought it would be worthwhile to look into what "An Oasis of Healing" get up to, and it makes interesting reading. H ave a look.

And then there's this.

It appears that threatening me has just spread criticism of your boss from my humble site to those with a far higher readership and Google rankings, and made you famous as a person who writes threatening letters to cancer patients for a living. I believe this is known as the Streisand effect.

That's quality marketing, Shayla!

Threats....

2010-01-08T12:50:00.000-08:00

I received the following threat of legal action today:

Hello,

I am contacting you regarding a blog you have posted that contains information about Dr Lodi that has never been verified.

http://www.mymalignantmelanoma.com/2009/05/thomas-lodi.html

We are requesting that you remove this blog immediately because you are slandering his name without any proof of your accusations.

I realize that you have your blog linked to an article posted in the Arizona Republic but if you look further into the charges that were brought against Dr Lodi you will see that they were never substantiated.

Please let me know when this blog has been removed.

If you do not remove the blog we will be forced to take legal action against your association.

Thank you in advance for your corporation in this matter.

Shayla McCallum

Director of Marketing

An Oasis of Healing

www.anoasisofhealing.com

Office: 480-834-5414

Direct: 480-834-5426

210 N Center Street

Suite #102

Mesa, AZ 85201

HIPPA CONFIDENTIALITY AND PRIVACY NOTICE: The information contained in this e-mail is private and confidential. It may contain Protected Health Information deemed confidential by HIPAA regulations. It is intended only for the use of the individual named above, and the privileges are not waived by virtue of this information having been sent by e-mail. Any use, dissemination, distribution or copying of the information contained in this communication is strictly prohibited by anyone except the named individual or that person’s agent. If you have received this e-mail in error, please notify us by telephone 480-834-5414 and via e-mail to shayla@anoasisofhealing.com immediately purge this e-mail. Thank you.

DISCLAIMER: The information contained in this e-mail is for educational purposes only. These statements have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure, or prevent any disease; and any product mentioned in this e-mail is not intended to diagnose, prevent, treat, cure, or prevent any disease. Furthermore, the information provided hereinabove comes without any warranty whatsoever. Use it at your own risk. Just because a product, program, book, or service, etc. is mentioned hereinabove does not mean that that we endorse or approve of it. All the other standard disclaimers also apply.

I have asked them to confirm which allegation they are objecting to, it is all true to the best of my knowledge, though I am always willing to learn.

I am told by Shayla that they object to my saying that homoeopaths are not real doctors, and that Mr. Lodi got his homoeopathic medical licence back, the allegations of cocaine addiction never being substantiated.

Well, in the UK, homoeopaths are not necessarily doctors of any kind, and I'd be happy to see the evidence which shows Lodi got his licence back. In the meantime, I have removed the bits Shayla objected to. Even without thosebits, it's hardly a ringing endorsement.

Shalya also asked me not to use her name, as she was just doing her job in threatening me with legal action. That's some job you have, Shayla!-threatening cancer patients with legal action, and marketing questionable medical treatments to the desperate and dying. Your parents must be very proud.

UK Trials of PLX4032 are at Oxbridge

2009-12-21T03:01:00.000-08:00

The Oxford Cancer Centre and Addenbrooks in Cambridge are both conducting Phase 1 trials of the PLX4032/RO4987655 "superdrug" for patients with advanced MM.

"Melanoma Code Cracked"

2009-12-17T11:45:00.000-08:00

Just in case you hadn't heard, CRUK have sequenced a complete melanoma genome, and found 33,000 mutations, confirming the "multi-hit" nature of cancer causation. More.

RO4987655

2009-12-08T02:04:00.000-08:00

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.

Etienne Callebout

2009-12-08T00:17:00.000-08:00

A concerned friend of a melanoma patient has written to me to ask about naturopathy in general and a naturopath called Etienne Callebout in particular. Of course naturopathy is little more than systematised quackery, but let's have a quick look at the things Callebout's publicity says he uses to treat cancer:

714X-Quackery
Aloe vera-Quackery
Amygdalin (laetrile)- Quackery
Bovine cartilage - Quackery
DMSO - Quackery

- you get the idea.

Wobe-Mugos enzymes - worthless
Glandulars - senseless
Green tea can be a nice drink, but does not cure cancer.
Iscador -is a trade name for mistletoe extract which "has no proven benefit and can cause harm"
Flaxseed oil - extremely questionable
Maitake - extremely questionable
Shark cartilage - Quackery
Homeopathic remedies - there are no such things

A quick glance over the 'net shows that these are just a small selection from Callebout's extensive arsenal of nice little earners. Cancer Patients Beware!

Melanoma and the Thyroid

2009-11-27T02:43:00.001-08:00

A poster over on the Melanoma forum pointed out that a number of the women on the site had a past history of thyroid problems, and asked if there was a known link. To my surprise, it seems that there might be.

This paper claims that thyroid stimulating hormone, (which is found in higher concentrations in people with low thyroid activity) is a growth factor for human melanoma cells. There is even a recent paper describing attempts to use the similarities between melanoma and thyroid cells as a weapon against melanoma, reporting disappointing initial results.

Once again proving that there's more to melanoma than tanorexi a...

What Now - the return of the alties

2009-11-23T10:09:00.000-08:00

I've heard nothing from fellow What Now posters for a while on promotion of snake oil on What Now, so I had a look just now to see how effectively it is being controlled. Not very, I'm afraid.

A quick check (simply by putting "alternative" into the site's search box) shows a great deal of uncontradicted false information on such things as AHCC capsules, apricot kernels, the cancertutor and canceractive quackery promotion sites, black propaganda against Ben Goldacre and Quackwatch, Gemm therapy, Jan de "Vriers" powders, Broncosol (and apricot kernels again), "Trying any alternative medicine you can find", Direct promotion (complete with weblink) of foreign sites selling quack cancer cures, yet another site promoting quackery with false claims, Mistletoe treatment. These are just from the first six pages of 99, and I've not even included all of the other pages where false claims have some sort of response, however weak or unconvincing.

What are those of you who told me that the site didn't need someone to keep an eye on those who promote quackery to the desperate going to do about it?

Corrections to the What Now misinformation:

AHCC capsules are not "known to help prevent cancer returning" contrary to poster's claims. Their supposed active ingredient is maitake and shiitake mushrooms. To quote the American Cancer Society "There is no convincing clinical evidence to date in available peer-reviewed medical journals reporting that the maitake mushroom is effective in treating or preventing cancer in humans". The same is true of Shiitake.

Apricot kernels are the thin end of the laetrile wedge. They contain amygdalin, a form of cyanide with no more anti-cancer effect than any other form of cyanide.

Cancertutor promotes every brand of cancer quackery with lies. Best to read Quackwatch's special message to cancer patients.

Canceractive-see above

The propaganda against Ben Goldacre and Quackwatch reproduced on What Now is unfounded. The What Now poster has uncritically reproduced the baseless self-published rantings of an anti-vaccination campaigner, and the internet smear campaign of "an entity whose purpose is to assist "alternative" health practitioners faced with regulatory action, criminal prosecution, or other matters that threaten their financial well-being" as it says in the pending libel case against them. Macmillan are most unwise to allow their site to repeat this libellous claim.

The claim to cure incurable cancers made for Gemm therapy is only one of a range of fantastic claims made by its inventor for the technology he named after himself, including safe nuclear power, and psychic abilities. The only evidence for the technique ever published appears to be in what may be the world' least credible journal, the "Journal of Frontier Perspectives", alongside stuff about Alien abductions, UFOs, Tarot readings, and dowsing.

Jan de "Vriers" powders- Jan de Vries is a naturopath. The US authorities concluded as far back as 1968 that "Naturopathic theory and practice are not based upon the body of basic knowledge related to health, disease, and health care which has been widely accepted by the scientific community. Moreover, irrespective of its theory, the scope and quality of naturopathic education do not prepare the practitioner to make an adequate diagnosis and provide appropriate treatment."Naturopathy is horseshit,

Broncosol is an extract of broccoli, sprouts and watercress which sell at around £1 per tablet. Do I really need to point out that there are no vegetables which cure cancer? Yes? Really? OK, broccoli does not cure cancer.

Alternative cancer.net- see Cancertutor/Canceractive

Mistletoe treatment comes from a religious approach to medicine invented by Rudolph Steiner, a philosopher with no medical qualifications, who thought amongst other things that the heart is not responsible for circulating the blood. It has no effect on melanoma other than possibly promoting spread to the brain.

BRAF Mutations and AZD6244

2009-11-11T07:45:00.000-08:00

There's a paper in the British Journal of Cancer showing success in detecting BRAF mutations via blood samples instead of tumour biopsies.

The presence of these mutations is the basis for treatment with PLX4032, as well as the drug in this trial, AZD6244, though the two drugs work in different ways.

I see there is an open clinical trial of AZD6244 in Oxford, and that the BJC paper is authored by people at Christie's.

Radiotherapy against MM- The latest from Aus.

2009-11-03T08:33:00.000-08:00

The Australians have been using radiotherapy after wide area excision of melanoma for quite a while, and include it in their equivalent of the NICE guidelines. No surprise then that the latest study showing a certain degree of qualified success with radiotherapy comes from there.

None too impressive results though: Though by the end of the study, 19 percent of the radiation patients had experienced a local nodal relapse of their melanoma, compared with 31 percent of patients who did not undergo postoperative radiation treatment, overall survival was not affected.

Genomel

2009-10-22T03:02:00.000-07:00

Jen has kindly given us her story, with an interesting tip about the Genomel site's self-checking guide. It's worth a look!

New Story

2009-10-20T07:25:00.000-07:00

We've added a new story. Thanks Lesley. Otherwise things are quiet in the world of melanoma AFAIK.

I'm on retreat again from Saturday, so things are going to get still quieter from a personal point of view.

A new era

2009-09-28T00:15:00.000-07:00

With a number of promising drugs advancing through trials, the president of the European Cancer Organisation is calling this a new era in melanoma treatment.

You can see a video of an interview with him about this, as well as the relevant presentations to the ECCO conference here.

PLX4032/RG7204/RO5185426

2009-09-23T23:30:00.000-07:00

Another snappy blog title...There's a new trial of the promising drug formerly known as PLX4032 or RG7204, now known as RO5185426, as Hoffmann-Roche have a collaboration agreement with the original developer (Plexxikon)

There is a phase 2 trial just started, details here. It is encouraging that this is a phase 2 trial, but they haven't published the results of the previous Phase 2 trial yet.

It's looking reasonably hopeful, as I reported back in June., and there are a couple of people on the melanoma board hoping to go on the trial.

New results for the Phase 1 extension trial are more hopeful still than the initial phase 1 trial I reported on earlier. 70% response rate (compared with about 15% for the standard treatment), one complete response (cure), and an approximate average of 30% tumour shrinkage. Other treatments have looked good at this stage, so let's not get over-excited, but looking good so far.

When viewing the response rate, it should be borne in mind that if your tumours do not have a mutation (BRAF^V600E ) which is present in 50% of melanomas, you won't get the drug, so it is only perhaps twice as good as the standard treatment in terms of response rates. The manufacturer are developing a test kit for the mutation alongside the drug to screen for people it might help.

No Melanoma Epidemic

2009-09-17T02:27:00.000-07:00

The latest British Journal of Dermatology has a study which says that the rise in the number of MM cases is as a result of doctors looking too hard, rather than a genuine rise in cases.

It claims that pretty much all of the rise is accounted for by misdiagnosis of benign marks on the skin as stage 1 MM, and notes that death rates have not risen during the period, as one would expect if MM rates were genuinely higher. Abstract.

The idea that melanoma diagnosis is something of a lottery is not a new one, as an article called Pathology as Art Appreciation discussed back in 1997.

This new study obviously means that the attempts to explain away the supposed rise by reference to the increase in high intensity UV exposure during the period are unnecessary, an explanation in search of something to explain.

Of course, we cannot endorse the attempts by the Indoor Tanning Association to claim that this proves UV is not related to MM. No such conclusion is drawn by the study, though as was discussed in the BMJ a short while ago, the idea that MM is mostly caused by sun exposure is nowhere near as conclusive as it is for other skin cancers.

Retreat

2009-09-12T04:16:00.000-07:00

I've been back from retreat for a week now, and nothing much has happened. Just before I went away I had a checkup at Notts, and I'm now three years NED. Which is nice.