My Malignant Melanoma

Watchful Waiting

2012-01-24T03:42:00.000-08:00

London didn't sign me off as I "knew" they would- there's a tiny nodule in one of my lungs on the CT scan which I was told was clear. They assure me their radiologist says it isn't malignant.

So I'm going to be continuing with the "watchful waiting" protocol. Good to be watchful, but I'm tired of waiting - I'll just get on.

The "All-Clear"

2011-12-13T08:01:00.000-08:00

My local hospital discharged me today, and I know London will too when I go down to see them early in the new year. This is what those unfamiliar with cancer call the all-clear. It's a weight off, but though I know it's no all-clear, I feel I can get on with my life.

Yervoy Campaign

2011-11-05T04:04:00.005-07:00

Reposted from the Melanoma Board:

I hope you will be able to help me with this – http://www.parliament.uk/edm/2010-12/2362

Stephen Gilbert MP has tabled this and I’m so grateful for his support. I wonder if you would mind forwarding this to your MP to see if we can get more signatures? To make it easy for you, you can find your MP here http://findyourmp.parliament.uk/

I know that you know how much work I’ve put into this over the last few years and if it is that this drug can be approved, it will be such a huge lift for all melanoma patients and their families.

It would mean so much to me if you can spare a few minutes to help.

Not so NICE II

2011-10-13T22:30:00.000-07:00

Looks like NICE thought Yervoy (Ipilimumab) wasn't worth the NHS's money:

"Despite the combined value of these factors the Committee considered that the magnitude of additional weight that would need to be assigned to the QALY gains for people with advanced (unresectable or metastatic) melanoma would be too great for ipilimumab to be considered a cost-effective use of NHS resources."

They are inviting your comments. Follow the link above to do so.

Thanks to Sarah for the heads-up...

Update

2011-09-13T23:29:00.001-07:00

There is a very encouraging update to Sarah's story.

Why do we need evidence based medicine?

2011-09-12T07:48:00.001-07:00

Ask the BMJ - all evidence is not equal. Rigvir, one of whose paid promoters is currently spamming cancer chat is a case in point. They just won't let it lie, but to everyone except its saleswomen, Rigvir is an untested, unsafe, ineffective live meningitis virus.

Courtney's Story

2011-09-12T05:34:00.001-07:00

Another new story: Thanks Courtney (and mom)

Christmas Cards

2011-09-12T03:57:00.000-07:00

Christmas comes earlier every year - here's me plugging Christmas cards (hand-made by the family of a patient) in aid of MM treatment at the Christie Hospital in Manchester. Get'em here.

Aidan's Story

2011-09-10T01:44:00.001-07:00

Aidan has provided his melanoma story for the site. Thanks Aidan!

Scan Results

2011-09-03T05:45:00.000-07:00

Got my scan results - all clear. That's 5 years NED - I feel lucky when I think of all those diagnosed at the same time or after me who died during those five years - John, Katie, Alison, Kerry, Johnny Deep, Janet - just the ones I knew from the internet.

Ipilimumab - Vemurafenib Combo

2011-08-19T08:25:00.000-07:00

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

Maybe not?

2011-08-17T02:01:00.001-07:00

Letter from the hospital today moving my consultant appointment reviewing my CT scan forward three months. I can't imagine that this is good news, but the NHS will no doubt make me wait.

Luckily I still have a bit of that well person's complacency and denial on my side, but I get my GP to phone them anyway. The scan hasn't been reported yet, so it's an administrator who has decided to get me in quicker rather than a concerned doctor. Scanxiety, eh?

Done?

2011-08-16T08:54:00.000-07:00

Had my CT scan yesterday, then off as has become my tradition for Dim Sum at the New World in Chinatown, which more or less balances things out.

I just need to wait until my consultant appointment to hear if all was OK. I'm not at all worried, I've seemingly gone back to the complacent state of those whom haven't had cancer, believing that all will be OK and it couldn't happen to me.

If this is clear, I'm all done with London. No more Dim Sum and no more cancer. Seems fair.

Scanxiety

2011-08-15T02:32:00.000-07:00

Off for a CT scan in a bit. This might be my last one ever-it's been five years with no sign of recurrence, and if it is clear, London intend to discharge me. Strangely, this piles on the pressure, but I'm no stranger to scanxiety now.

Cancer Boards, Complementary Claims and Quackery

2011-07-14T06:16:00.000-07:00

There are many cancer message boards on the internet, the better ones ban the promotion of "alternative medicine", and are very careful about claims made for complementary medicine - you might think for example that reiki was just a harmless footrub, until you hear its practitioners claim that they can cure cancer-even over the 'phone.

A big problem with even the most tightly regulated boards is that the moderators do not wish to destroy hope, even to some extent false hope.

A second problem is the preponderance of middle-class, middle-aged women on such boards. They'd like the rules of the board to be those of the coffee-morning- it's more important to be seen to be nice than to be right, and it's not what you say, but how you say it. Some forums, (which I avoid or quickly get banned from) agree to these rules- such boards become virtually male-free zones in quite short order.

But being seen to be nice is not actually being nice. It's not nice to allow people to think that they can avoid conventional treatment as the quack has their back. It's not nice to allow people to claim that quack diets boost the immune system when they don't, or that you need to pretend to be happy about having cancer or you'll die sooner.

The nice thing to do is warn people who have been taken in by quacks and are now themselves attempting to promote quackery one warning and them stamp on their arguments every time they make them until they stop.

The nice thing to do with those who practice or promote quackery for a living is split them, salt them and nail them to a fence.

Immune System Boosters

2011-07-12T03:01:00.000-07:00

I've been having a low-level row about "Cancer Diets" with a quacktard over on CRUK's cancer chat who has been taken in by the usual dodgy internet sites (particularly "cancertutor" in his case, and just for variety, incorporating quack diets for autism)

As is often the case with reasonably well-moderated sites, he is trying to restrict his claims to that thin-end-of-the-wedge classic: "I'm not saying X (insert name of quack cure here) cures cancer, I'm saying it boosts the immune system".

So I point out CRUK's advice on this issue, here "You need a balanced diet, with plenty of calories, to keep your immune system working well. This can help you fight off infections, as well as helping your body fight the cancer". I explain that there are no diets or supplements which boost the immune system, and that if there were, we'd all be prescribed them, because boosting the immune system is actually a potential cure for cancer.

There is in fact an immune system booster being trialled as a melanoma cure, Allovectin- 7. It's looking pretty good. So is Allovectin made of carrots? Noni Juice? Soursop? 'fraid not, Its a gene therapy which puts markers on the surface of MM cells so that the immune system can see them.

Not so NICE?

2011-06-09T01:28:00.000-07:00

So we have some new effective drugs for MM which have been free to patients during the clinical trials, but back in the real world, I hear they are likely to cost about £75,000 for a course of treatment.

NICE thinks a quality adjusted year of life is worth around £30,000, so the drugs would have to provide at least a couple of years of good quality life to get past NICE (which they don't on average)

Better start the petition now!

PLX4032/Vemurafenib Phase III trial results

2011-06-05T09:00:00.000-07:00

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.

They said it couldnt be done...

2011-06-02T13:47:00.000-07:00

Remember when I said that it was unlikely that big pharma companies would collaborate to bring us combinations of the effective new Melanoma treatments? I'm glad to report that Bristol Myers and Roche have proven me wrong with their newly announced collaboration, to combine Roche's BRAF inhibitor PLX4032 (now known as Vemurafenib) with ipilimumab (now known as Yervoy) in Phase III trials.

Dear 16 Year Old Me....

2011-05-04T23:40:00.000-07:00

Watch This

Reply to a sCAM artist

2011-04-16T02:00:00.001-07:00

Whilst you can believe what you like, there is in fact plenty of evidence that positive mental attitude and attitude have no effect on the outcome of cancer (though of course it isn't science's job to prove every fad wrong).

Every trial which finds no effect on cancer isn't just not providing supporting evidence, it is providing opposing evidence.

For example, dietary Vitamin C has been trialled, and is known not to work. It's not just that it hasn't been proven not to work, so thinking that it might work is supportable - it has been shown not to work. Beta carotene was tested and found to be actively harmful, as was vitamin E.

The informed position here is that the normal dietary recommendations, without any dietary supplements, or the elimination of any dietary component is what is recommended for cancer patients, and that if there are any circumstances in which a special diet is needed, the patient will be told by their care team. Patients should discuss with that team any supplement they are thinking of taking or diet they are thinking of trying, not anonymous people on the internet who might be healthy but bored teenage kids or alternative medicine practitioners for all we know.

Positive mental attitude has no effect on the outcome of cancer, and research suggests that the best coping style for the patient is their usual one. If you are usually sunny in disposition, go with that, but being admonished to keep smiling when you feel like crying is not encouraging but oppressive. It sounds great saying you need to have a fighting attitude to cancer, but my friend's 15-year old daughter died of MM - didn't she try hard enough to live?

Perhaps this is why I so often see the relatives of those with cancer as the foremost proponents of PMA on cancer boards. As you point out, we wouldn't want to be overwhelmed with negative emotions, and of course we all try not to be, and to protect those who care for us from our darker moments. But for those of you who haven't had cancer, let me tell you, it can be a bit of a downer. I know cancer's cheerleaders mean well, but what are they telling those who feel depressed, and those who despair - cheer up or you'll die?

Yes, there is hope. I have/have had advanced cancer, and was given the "its' all palliative from here" speech five years ago. I have melanoma, for which there was no treatment other than surgery back when I was diagnosed. I had the surgery, and after researching the so called "alternatives", got on with my life. I haven't taken any quack diets, supplements or complementary therapies, yet here I am, five years NED. It's a miracle!

No it isn't. I have had proven effective treatment, and I been lucky so far. Others I know had the same treatment at the same stage as me, and they are dead. The world is a chancy and an unfair place. We all want to believe that some lucky charm or magic beans will make us lucky. Nothing more human than superstition, but it doesn't work on cancer - surgery, chemo and radiotherapy work.

The great hope for MM patients is that during the time since I was diagnosed, new life-extending drugs have been developed by those evil drug companies I hear so much about on cancer forums. They were not found by chance from the "alternatives"- nothing ever has been, despite what you hear on the 'net. They were found via the human genome project. Have hope, but look in the right direction. If we are going to be cured, the answer will come from science and medicine, not from "alternative medicine"'s cynical exploiters of the desperate, or the woolly minded fools of "complementary therapy".

So called complementary and alternative medicine (sCAM) doesn't work. I mean not just that it doesn't cure cancer, but that it has no beneficial effect on cancer treatment. It doesn't help treatment to work, as those who like to blur the line between hard reality and pleasant fantasy claim. It has no effect whatever on cancer. Of course a bit of a footrub or some smellies might be nice - I like a massage and a go in the steam room myself. But that's not why I'm here writing this. It's because some people spent long years training and learning things that many others spent hard years discovering, and those people used their skills and knowledge to apparently cure me. You want hope? Hope in them.

Of course many of them didn't have time in all of this training to acquire people skills, and the level of people skills required to deal effectively on an emotional level with confused, frightened, despairing people all day every day is a very big ask. I understand if people want a book or a person to put their faith in, someone to make sense of it all, a bit of harmless comfort, some way of feeling in control, even if it's just over what they eat.

If only these simple comforters would have the honesty to admit the truth, which is that all they offer is empty comfort. If only they wouldn't attempt to erode confidence in our real chance of survival, to blur the line, and claim more power than they really have. Many of them do have that honesty, and fair play to them. But those who offer false hope with lies and half-truths put people on the slippery slope that leads into the hands of "alternative medicine" - and consequently death. So have a care.

It's all happening...

2011-04-06T05:23:00.000-07:00

Another human trial drug combination looks very promising against MM. Back when I was diagnosed this never happened, now it feels like there's a new one every week...

State of Play

2011-04-05T02:11:00.001-07:00

A great summary of the state of play with new MM drugs can be seen here.

Dr. Julian Lieb flips out again

2011-03-26T06:10:00.000-07:00

I think my latest email from psychiatrist-turned-amateur-oncologist Julian Lieb speaks for itself:

Claude Bernard noted that people whose “minds are bound and cramped” disdain opposing theories because they do not want to discover anything that might disprove their own. Bernard referred to them as “despisers of their fellows,” corrupting results that support their rivals, thus falsifying the facts.

It is the human and ethical right of every patient, physician and citizen, to receive medical information without any interference, second guessing, reevaluation, modification, editorializing, corruption, or delay. Your disparaging comments are immediately encountered upon Googling, thus corrupting my entire research output, and corrupting human and ethical rights on a gigantic scale. You have permanently damaged my reputation, and deprived an incalculable number of cancer sufferers, of their human and ethical rights, of which these are the most important. It is in your best interests to eradicate every detail of our relationship, and apologize to those whose human and ethical rights you corrupted. You did not have the right to corrupt my innovation, stigmatize me, and corrupt my human and ethical rights..

I advise you to terminate all of your internet activities, and never use it again to disseminate your opinions, positive or negative, about any health related issue. Many physicians are deeply concerned about rampant medical corruption on the internet, of which this is a prime example.

He's banned me from the internet! Glad to hear I am so effective. If only.

Ipilimumab gets FDA approval

2011-03-25T15:04:00.000-07:00

...and becomes known as Yervoy...

Rigvir- she couldn't let it lie

2011-03-23T06:07:00.000-07:00

Inga the Rigvir publicist has been kind enough to write again:

Well, this obviously is a one-man-show. Seanty – the utmost expert in all cancer medicines, and a professional guide to Latvia's medical system. :) The one and only voice of truth from the depths of civilization.

You place a link to a U.S. Clinical Trials website. Why?! What does this link have to do with a medicine which is registered in Latvia?! You won't find RIGVIR in the U.S., Turkey's, Ukraine's, or any other country's clinical trials' sites, and you don't have to spend your precious time trying to prove it. RIGVIR went through all clinical trials in L A T V I A.

By the way, what is this disdain towards my country? Sounds like you're having some personal issues which have nothing to do with objective evaluation of RIGVIR. What next? You will try to force that everyone should eat at McDonald's just because it's the American way?

I will not involve in this again so enjoy your incompetent babbling about civilization, highly infectious viruses, medical systems, clinical trials, untested virotherapy(?!) and so on and so forth.

She also put three links to her employer's quack promotion sites at the end, presumably in the hope that I would be stupid enough to post them up. Duh.

But she has questions: so let's answer them: Why did I post a link to the US clinical trials site, showing no mention of Rigvir? Because if you want to sell a medical treatment worldwide, you register your trial there-but it's not just that Rigvir hasn't been tested to international standards. I can see no evidence that Rigvir has ever been subjected to any clinical trials at all, in Latvia or elsewhere. The dross they list on their publicity site is not reports of clinical trials against melanoma or anything else, or even papers in peer-reviewed scientific journals. It constitutes far more trivial claims, which were never checked by third parties, made twenty years ago.

So, it is untested. It is a virotherapy. It is an untested virotherapy. Fact.

Rigvir is an ECHO virus, so the claim that it is of a type which is both highly infectious and responsible for many cases of childhood meningitis is factual.

Why the disdain toward Latvia? Well, joking aside, it's quite a focussed disdain. If Inga and her employers are not in prison, Latvia's medical standards need tightening up.

Story updates

2011-03-21T09:48:00.000-07:00

There are updates to Sarah's and Glen's stories of living with Stage 4 MM.

I mention staging because if you put "Stage 4 melanoma" into Google back when I was diagnosed, you were swamped by pages of paid ads and testimonials for quack "cures". Now the first ten pages are lists of clinically proven treatments. If you want a sign of how things have moved on, there it is.

Ipi set for FDA approval

2011-03-17T12:39:00.000-07:00

Ipilimumab is strongly rumoured to be on the brink of FDA approval on the back of its successful clinical trials.

Rigvir again

2011-03-13T04:12:00.000-07:00

In Latvia, you can buy lab-modified highly infectious childhood meningitis viruses over the counter in the chemist (and for all I know, the newsagent) with unsubstantiated claims of effectiveness against melanoma. This product, untested for safety or effectiveness, is called Rigvir. "Inga" writes (probably from the office of Rigvir's publicists):

"Sorry if I'm wrong, Seanty, but you are trying so hard to “destroy” Rigvir that it makes me think you have been paid by someone to do so. I wonder who might that have been. Oncovex?"

Be sorry then, Inga, because you are wrong on all counts.

"Nevertheless, it's great you post your opinion, but why do you slender the facts? Let's see - Rigvir has been registered in a member state of the EU, that's a fact. This fact proves that Rigvir has gone through ALL 3 PHASES of clinical trials. Cancer patients should be allowed to decide for themselves on the efficiency of some medicine, but they should not be given wrong information, agree?"

First let's remove the wrong information from your own communication, Inga - Rigvir has not been subjected to a phase 1 clinical trial, let alone passed all three. Latvia's medical system is (to put it politely) not quite as formal as those in the more developed EU countries. That you can buy an untested virotherapy over the counter in pharmacies tells you everything you need to know about medical regulatory standards in Latvia. If it passes clinical trials, Oncovex is not going to be found next to the tampons in Superdrug.

Then there is the question you raise of whether of cancer patients should judge for themselves on the efficiency of cancer medicines. Though I understand you have your own ways on Latvia, over here in civilisation we have doctors for that. It's quite tricky you see, even if you aren't making the decision under threat of death.

A quick look around the internet shows the results of letting frightened unqualified people choose their own treatment for life-threatening illnesses. They get ripped off by bloodsucking scum like your employer, then they die. Other than that it's a great idea, obviously.

Sentinel Node Biopsy

2011-03-13T04:05:00.001-07:00

A negative SNB is associated with a very low risk of recurrence in the lymph nodes according to a big new meta analysis.

Melanoma Education Symposium

2011-03-04T07:19:00.000-08:00

I've been asked to publicise the Melanoma Education Symposium taking place in Santa Monica on 26th March. I'd go but it's a bit out of my way...

Top 5 New Treatments

2011-02-27T05:58:00.000-08:00

Update on the top new MM treatments:

Allovectin-7

Immune system booster, Phase 3 trial had positive results

Oblimersen

Gene therapy, Phase 1 trial results just in- showed no responses at planned dosage

Ipilimumab

Antibody targeting CTLA-4-this is the only drug so far shown to prolong life, available both via open UK trials and for compassionate use

OncoVEX

A modified virus carrying a helpful gene, looks promising so far, there is an open UK Phase 3 Trial.

PLX4032

BRAF inhibitor - early trials showed high response rates but it seems that these responses may be short-lived, supporting the anecdotal reports which have been circulating on cancer patients' boards.

Did I say 5? Let's have a sixth/seventh- Glaxo's "me too" B-RAF and MEK inhibitors, presently in Phase 3 Trials.

Talking of MEK inhibitiors, whatever happened to AZD6244? There seems to be an open phase II trial, but no results as yet (MEK inhibitors work on a different link in the chain which B-RAF lies on, and similarly require B-RAF mutant tumours to work)

It might be that combination therapy with two of these agents would be more than twice as good as any on their own, but that would mean drugs companies cooperating instead of competing. Here's an occasion where we might wish the quacks' supposed "cancer conspiracy" were true, and drug companies really did act in concert.

Update- the combination trial is happening.

Genetic transmission of MM to kids

2011-02-16T00:07:00.000-08:00

Someone asked me today on behalf of a mother with MM if she might have transmitted the B-RAF mutation to her kids. Short story- nope.

Longer explanation:

In order for a cancer to spread, a number of the things which prevent uncontrolled growth in normal cells have to go wrong. There are things which repair damage to DNA, limit the number of times a cell can divide, things which cause cells to suicide if they are defective, things which make the immune system kill cells, and so on.

All cancer cells have to have a range of these faults to progress even to a stage 0 cancer. You can be born with faults inherited from your parents that help things along like BRCA, you can pick them up from the action of viruses as in cervical cancer, or from the effect of radiation on DNA as is believed to be the case with the B-RAF mutation, and so on. More commonly, it is thought that a number of these things come together to make cancer.They sequenced MM tumours quite recently, and there were thousands of mutations.

We all have the B-RAF gene, which essentially acts as a check on cell growth. The mutant B-RAF gene's ineffectiveness takes the brakes off cell growth. It exists only in the cancer cells themselves. Blocking this effect is how the B-RAF drugs work. The mutant form is not likely to be in a person with MM's egg or sperm cells, and if it were, there are in any case processes which kill any sex cells with mutations. You don't pass on the mutation.

There is evidence of a familial form of MM, known as dysplastic naevus syndrome, but the suspect gene there is called p16, and the evidence is nowhere near as strong as it is for BRCA- they think other (presently unidentified) genes are involved. Only around 10% of MM has this suspected basis, and those affected have a 50% risk of MM by age 50.

Thomas Lodi again...

2011-02-15T23:54:00.000-08:00

I have been sent the following unsolicited testimonial for Thomas Lodi, whose minion Shayla threatened to sue me a while back:

What Thomas Lodi is doing is amazing. Anyone that goes through traditional methods is playing Russian roulette, I know because I went through it. I am now on 100% raw diet and lifestyle. I know you think this is all bullocks but it saved my life when nothing else could. If you open your mind and look at the science of raw food and detox as it correlates to cancer maybe you will learn that chemo alone is no more succesfull than a placebo. Watch the documentary "healing cancer from the inside out"

so let's have a look at this testimonial in the light of surgical oncologist Peter Moran's guidance on how to do so:

The basics ---

1. Was cancer definitely present , as shown by reliable tests, when treatment was commenced?

2. Did it go away? (or clearly respond otherwise, as judged by the same tests)

3. Was the advocated treatment the only one used ? (within 2-3 months of the apparent cancer response)

A "good" testimonial should fulfil these three requirements.

1. Was cancer definitely present? We don't know, no evidence to support the idea that this is anyone other than Lodi himself is offered, but let's give him the benefit of the doubt: Yes, though we don't know what kind, or what stage it was at.

2. Did it go away? again, no evidence offered, but again, let's be generous: Yes, though we haven't been told if this was a type or stage of cancer which commonly goes away of its own accord.

3. Was the treatment the only one used? By his own admission, No, he says he went through conventional therapy. For some reason he does not believe this cure was effected by the conventional therapy, and that his life was "saved" by the simple expedient of not cooking his food.

So why does he believe this to be the case? He tell us- he mistakenly believes that chemo is no better than placebo, and that raw food cures cancer, because he watched some quack's video on the internet.

Chemo which is not considerably better than placebo doesn't get licensed. Of course our correspondent believes in the conspiracy to suppress cancer cures- on his planet, cures don't get licensed, they get buried by the evil doctors and medical researchers.

But I'll open my mind- let's have a look at the science of raw food and detox as it applies to cancer, and "healing cancer from the inside out", a sickening promo video for yet another quack. OK, I looked: an open-minded investigation suggests to me that this is a scientifically groundless exercise in the cynical financial exploitation of desperate cancer patients.

I don't think this is bullocks, by the way - I do however think it is bollocks. I agree with the writer on one issue: that what Thomas Lodi is doing is amazing. How a video by a commercially interested party which claims in direct opposition to the truth that his competition (conventional medical treatment) is both financially corrupt, and ineffective would convince anyone other than a moron is a mystery to me.

A quacktard writes

2010-12-29T04:00:00.000-08:00

I've had the following attempted comment over on my Tullio Simoncini post:

"Someone obviously needs to do more research and perhaps brush up on their high school chemistry and biology. The human body will only remain healthy if it has the proper PH balance, and that is all Sodium Bicarbonate does is raise the level of the PH, which does not allow for any bacteria, virus or fungi to thrive. "

Fantastic! The commentator is under the impression that they understand basic biology and chemistry better than I do. He is also under the impression that a bit of bicarb raises the pH of the human body so radically that it kills all bacteria, fungi and viruses without harming the person involved, and clearly implies that killing these organisms kills cancer. On his planet, Rennies kill cancer, because cancer is a fungus, and fungi are killed by alkali.

So let's have a look at this idea. The highest pH at which I can see a report of fungi growing, is 11.2. Now that's a bit of a problem there, straight away. If bicarb really could get your body's pH to 11.3 you'd be dead. Having blood pH over 7.45 is a medical condition called alkalosis, get much above that and you're toast. So if bicarb really could increase pH to the range which kills fungi, the patient would be long dead by the time you got there.

But can adding bicarbonate of soda really get you to that pH? Nope. It is only a weak alkali, solutions have a maximum pH only around 8. So bicarb will only elevate pH to around 1 unit from neutral, whereas some fungi can survive at pH 11+ (It is perhaps worth mentioning that pH is not a straight line scale, such that pH 11 is 1000 times as big as pH 8)

So, even if the human body's highly effective system for preventing alkalosis of the blood didn't exist, it simply is not chemically possible for bicarb to kill all fungi. And if it were? Cancer is not a fungus. Duh.

He's right about one thing though "Someone obviously needs to do more research and perhaps brush up on their high school chemistry and biology" I'm however not that someone, hope this helped anyone who did need a brush-up.

Julian Lieb, MD

2010-12-10T02:23:00.000-08:00

Professor Lieb is clearly a very important man, so it has taken him a while to comment on my post from back in May on his previous unsolicited correspondence. He doesn't seem very friendly:

It astonishes me that my humanitarian mission is greeted with verbal abuse, slander, character assassination, and ad hominem slurs. Your comments corrupt the innovation, and the BMA’s medical code. You are to retract your comments, including “pet theory,” apologize to me and the Yale medical school, and refer your followers to the article I sent you. Notify me of your compliance

I think he's hoping for the response "Yes, Master", but here's what I wrote back:

So now you have retired, you are nowhere near as important as you used to be in academia. Welcome to the real world.

I'm not a Doctor, so I couldn't care less about the BMA's code of ethics. Professor or not, you are a psychiatrist, not an oncologist, and I suggest you get your head out of your arse.

The paper you have attached is a speculative in vitro study. I can show you an equally convincing study for acetaminophen, vitamin C or many other substances. The other papers you directed me to were also less than definitive. If someone showed you evidence of the type and strength you are showing me for some medical issue other than this one, wouldn't you be sceptical?

I didn't ask you to write to me, and I have held back on the ridicule which your previous communications deserve. Neither have I slandered you, as far as I am aware. What error of fact is there in what i have written? I do understand that you mean well, but this looks like the hobby-horse of a bored old man to me, and indeed to several other people in the scientific community who you have spammed with your half-baked ideas in the past. No-one is taking you seriously. You are being indulged as the old fool you seem to be.

I am a cancer patient. Your recent communications seem to be more about attempting to bully me into accepting an illogical argument from authority than any humanitarian effort.

I suggest you get another hobby. This one doesn't seem to be making you happy.

Kind Regards
Seán

PLX4032 Resistance

2010-11-25T00:55:00.000-08:00

There has been internet chat about the emergence of resistance to the new BRAF drugs for a while-they are working on it.

New from BAD

2010-11-01T07:06:00.001-07:00

The British association of Dermatologists has released new guidelines for management of MM, which you can see here. They have also launched a new skincare range.

Waiting over

2010-10-18T09:03:00.000-07:00

Results are in, CT scan was clear. What was also clear is that my local hospitals are rubbish at working together, they both claimed it was the other one's job to help me when push came to shove. I'm going to drop the Prof., as his performance was the most disappointing of the two, and the other hospital is more local (though uncaring, incompetent and unprofessional). What a shower!

The Prof. called me at 6:30 PM (to give me the results of the scan I had arranged for myself, and had already arranged for someone else to tell me that morning, as he had ignored the four messages I left for him), so I got to drop him in person. He confirmed that he had thought that there was a fair chance that my MM had returned, but said that if it had, what's the rush, it wasn't like it would make a difference to the outcome. I paraphrase, but that is what he said.

I refrained from saying "well, it makes a F***ing difference to me". But it does.

Waiting

2010-10-14T00:09:00.001-07:00

Personally, I like action. I'd far rather be struggling with the indifference of the NHS, or even having treatment, however unpleasant, than being in the limbo of waiting for results.

This is one of the things that drives the use of alternative medicine-quack diets and so on give you the ability to think you are treating yourself between treatments. It's seductive-even I sometimes find myself considering cutting out the dietary components which quack diet books recommend, taking vitamins and so on. This is even though I know that the balance of evidence is that some of these recommendations can actually promote the growth of cancer.

The indifference of the medical professionals to your emotional reactions is another factor. I wouldn't fancy their job, telling five people a day that they are screwed. It's got to harden you, and fair play to them-you don't get to be a professor of medicine on the basis of your extraordinary niceness. Neither is empathy desirable in a surgeon, whose job it is to slice people up every day. Once there were relatively untrained nurses who did the hand-holding and arse-wiping, but now it's becoming an all graduate profession, most nurses think of themselves as a sort of doctor, too busy for the menial and emotional work. No-one offered me a wash in the week I was laid up in hospital after my lymph clearance, and the only nurses who seemed to care at all were the foreign ones, most notably Filipinas.

So I understand why the experience of cancer treatment leads people to look for comfort and a feeling of control wherever it is available. There are some exceptional people who are willing to provide this without strings, but there are many who offer help to promote some agenda. Essentially all of these agendas are religious in nature-abandon rationality, and we will help you to feel better. This is in my opinion why so often once a person is sucked in to a "cancer-fighting diet", they start to proselytise for it.

What makes this tricky is the sliding scale. Research suggests that cancer patients should follow the standard dietary recommendations, unless instructed otherwise by their multi-disciplinary team. But every internet post I have ever seen which talks about "healthy eating" is actually talking about something else. The thin end of the wedge is the Bristol Diet, which modifies the research based dietary advice based on ill-founded vegetarian propaganda. Then we have the Plant Diet, based on vegan propaganda- starting to get a bit dangerous now. We can go all the way up to diets which can prove fatal, like Gerson.

Each stage prepares the patient for the next. Even at the earliest stages of the journey, the initiate is exposed in passing to paranoid conspiracy theories which prepare them for the next leap of illogic. So when I take a hard line with people who are just starting out, who are doing things as well as effective treatment, rather than instead of, understand that if we don't stop them before they get on that slope, they will become immune to reason. When I take a harder line still with people who are already turning down conventional treatment, it is because I know that people at that stage will recruit others to their folly without the very strongest discouragement, as reliably as if they had been converted to the Moonies rather than the Gersonites.

Just goes to show...

2010-10-13T03:24:00.000-07:00

With a large number of phone calls, (mostly to people who were more concerned with making sure doctors weren't bothered by patients than helping them) I have managed to get my CT moved forward to tomorrow, and my consultant appointment moved to Monday, shortening my wait for results by more than two weeks.

Too much of the NHS is run for the benefit of its staff: my local hospital, (still apparently bearing a grudge from back when I insisted on an SNB against their recommendation) refused to help. They threw me off their books for this transgression, I only sneaked back on through the help of their specialist nurse. They aren't good, but they are local...

My slightly less local, but supposedly slightly better University hospital have also been dreadful. When I asked a question about something on my X-ray, I was given the answer "because that's how X-rays are", querying which resulted in repetition of the answer only slightly louder and clearer. I teach at the University this hospital is attached to - "Because" is not an appropriate answer to give any adult! The professor's secretary offered to get him to call me about a question I had twice. No call both times.

My big, anonymous London hospital bears no grudges, and aren't too small or too grand to give me an immediate appointment, though they don't always answer the 'phone, or remember what they told you.

Local hospitals made it quite clear that they think I'm trying to queue-jump, and my doctors won't even talk to me. Won't even explain to me why if the Prof. says he's worried, he's not worried enough to get a test done in less than a a month, let alone being able to deliver on their promise of getting the apparently God-like Prof. to call me personally to explain or set my mind at rest. I speak to Professors every day- what's so special about this one? Grr.

Me Too!

2010-10-11T02:47:00.000-07:00

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.

Chest X-ray

2010-10-05T09:35:00.001-07:00

Got a dodgy chest x-ray today. Have to wait three weeks for CT to see what's up. Bugger.

Gerson

2010-10-05T03:00:00.000-07:00

Another well-meaning advanced MM patient is plugging Gerson to their fellows, this time on Marsha's Melanomates Facebook group. Though its promotion by the desperate and the deluded has never lessened in the four years or so since I was diagnosed, not a single paper has been published in support of Gerson in a peer-reviewed journal, just like in the preceding fifty-odd years since Gerson dreamed this scam up. Gerson is still nonsense.

Balancing hype and hope

2010-09-15T05:50:00.000-07:00

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.

Chemotherapy

2010-09-09T01:05:00.000-07:00

Over on my Brandon Bays post, a fan of alternative medicine attempted to post a muddle-headed comment, drawing my attention to an Australian study which concludes that cytotoxic chemotherapy contributes little to five-year survival. He has the mistaken belief that this paper somehow strengthens the case for alternative medicine in general, and the quackery of Brandon Bays in particular.

I'm afraid that wouldn't follow logically even if this paper claimed (it doesn't) to have proven that chemo made no difference at all. Proof that chemo didn't work at all wouldn't tell us anything about whether magic beans cured cancer. This is the classic alternative medicine technique of muddying the waters.

What the paper actually says is that for adults, only a very modest (2.3%) increase in five year-survival was on average conferred solely by cytotoxic chemotherapy (note that this is not the raw figure, but has been corrected downwards to account for the placebo effect, and the effects of surgery and radiotherapy).

Tell us something we don't know! (Note that cytotoxic chemotherapy is a sub-set of chemotherapy, using simpler, older, drugs highly toxic with a lot of side-effects like cisplatin, and that the placebo effect accounts for 100% of the effect shown by alternative techniques). This sort of chemo is used only as a palliative measure in MM, so only the sickest patients get it, and it's a desperate measure. It's not only MM where this is true, so averaging across all cancers is a bit misleading (especially to non-scientists looking to promote quackery).

The paper says that for MM and a number of other cancers, there is no evidence of improved 5-year survival at all, but admits that for certain cancers, improvements in five year survival of up to 40% are evident. Drawing the blanket conclusion that this sort of chemo is no better than alternative medicine from this paper is unwarranted.

The paper says that some patients are oversold the possible benefits of chemo, and expect too much of it where only very modest improvements are possible. The point of the paper is that overall, this is not great value for the health service, and the cost/benefit profile of individual drugs should be considered in the way NICE does in the UK.

Again, we knew that, but look at the campaigns to allow sick cancer patients access to very expensive drugs that no-one is claiming offer more than a few extra months of life. Cytotoxic drugs are usually pretty easy to make, and consequently cheap. A team of medical researchers made one on top of Snowdon. Whilst it might not be great on average, the 15% response rate of DTIC means that some individuals get a few extra years. This effect is insignificant at the 5-year survival group level, but is significant as hell to those few individuals.

Now this might sound like the sort of arguments advanced by alties, but let us be clear. I am not saying (as they do) that these things really work, but your stupid science just cannot detect it. I am saying that licenced chemotherpaies have been shown to work, but in the case of MM, they are not likely to cure. (Note however that the paper concedes that in the case of some cancers chemo DOES offer a very significant chance of a cure)

So to return to Brandon Bays, does the paper we have been offered to support his claim that all chemotherapy, radiotherapy and surgery is harmful to all cancer patients do so? No, it says that sometimes (taking away those cases attributable to the placebo effect, radiotherapy and surgery) one particular sort of chemotherapy does not CURE some sorts of cancer. It does not give any case where is says that chemo makes cancer worse. It does not say that this sort of chemo is not helpful. This paper does not support the case it is quoted in support of in any way.

If there were a paper with the conclusion our poster thinks this one has, the treatment in question would be withdrawn - the NHS does not knowingly pay for treatments intended to cure which instead kill. There is no conspiracy to suppress the truth. There is no such thing as alternative medicine-there is medicine, and there is quackery. Funny isn't it that they lose their distrust of science when they think they have found a scientist who agrees with them though, isn't it?

Miracle Mineral Solution (aka MMS)

2010-08-11T03:10:00.000-07:00

The US FDA have recently issued a warning against Miracle Mineral Solution (aka MMS), often marketed to MM patients.

To quote:

The product, when used as directed, produces an industrial bleach that can cause serious harm to health. The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.
Consumers who have MMS should stop using it immediately and throw it away.

Couldn't be clearer advice!

Latest news...

2010-08-11T01:49:00.000-07:00

Rory's story has been updated, and Marsha has started a Facebook group for UK MM patients.

Thin Melanomas and Sentinel Node Biopsy

2010-08-06T03:25:00.000-07:00

A distraught American poster over on the Melanoma Board wants to believe that SNB can make his brother's thin melanoma 100% survivable, rather than relatively survivable compared with thicker MMs. One can see how this is emotionally the right answer for him, but it is not borne out by the evidence, as he imagines.

He has confused himself with a single study1 into believing that the only reason SNB is not done on such patients is because of the estimate that it would take $627,000 to $931,000 to save a single life by the use of this technique. In the real world, this is of course unfortunately reason enough. NICE uses £30,000 as the upper limit of economic treatment per Quality Adjusted Life Year. One can understand how relatives can put an infinite value on the lives of their loved ones, but spending £500,000 to save one life means that others are denied treatment when there is only so much money to go around.

Unfortunately, neither is the evidence that SNB has any effect on outcome for any MM as strong as he wishes to believe. He quotes a German paper 2 addressing quite a small a small group of patients from 2007, which says "Our data suggest that SLNE seems to nearly completely eliminate the risk of melanoma recurrences in patients with melanomas between 0.76 and 1 mm thick". Note the caveats on thickness, tumour type, the "suggest" and the "seems". Follow-up in this study was only for ten years, during which time, far more patients died of non-MM causes than from MM. Only non-ulcerated MM between 0.76 and 1mm thick were studied. Note that they made quite a faint claim only that it nearly completely eliminated the risk of recurrence over the ten years they studied. But it's not all over at ten years, consider this graph of percentage survival for patients with MM less than 1mm thick:

Source: 3

The Germans said that it might be that there is a difference between the frequency of recurrence after up to ten years of non-ulcerated MMs between 0.76 and 1mm thick between people who have SNB and those who do not. No conclusions about ulcerated MMs, other thicknesses, and other time-scales can reasonably be drawn from this study.

No one other than our confused poster has said that SNB can make all thin MMs 100% survivable. Everyone is entitled to an opinion of course, but this opinion is in conflict with that of experts, and looks like wishful thinking once the evidence offered in its support is inspected.

I am all in favour of patients empowering themselves with information, and at least this guy's self-education hasn't led him to the altie side, but it's so hard to keep yourself from believing only the evidence that supports the conclusion you want to draw, even if you have a scientific training.

He's getting a rough time from the people he is upsetting with his proselytising over on the MM board, but we should really feel sorry for him, to the extent that this is possible. This is his way of not coping with his brother's life-threatening illness-denial and anger.

Rigvir

2010-07-26T04:31:00.000-07:00

What is I presume a paid publicist over on the melanoma board has brought up the old Rigvir (supposed over-the-counter Latvian virus cure for MM) scam again.

The list of publications on the producer's website might look impressive to a non-scientist, but not one of them is published in a journal where fellow scientists get to exercise quality control over claims (what is known as peer-review). Despite being quoted as supposedly supporting the use of the "treatment", the overwhelming majority of the papers do not actually make any claims about the safety or effectiveness of the "therapy". It has never used been in any clinical trial, despite supposedly being developed forty years ago.

Confusingly, there is a real virus therapy for melanoma, Oncovex. What's the difference? There is evidence that Oncovex might work, and be safe. This is not the case for Rigvir. Be warned!

Moving on?

2010-07-02T05:47:00.000-07:00

I've been busy with work and teaching, and having now been banned from all cancer forums I would care to frequent, other than the Melanoma Board, the lack of any sign of recurrence means that MM isn't very much of my life nowadays. This is no bad thing- I wouldn't miss it if it was no part of my life at all, but with stage 3b MM, it'll be twelve years before I can be reasonably certain I dodged a bullet.

There's a twinge of guilt that John, Katie, Alison, Kerry and so many others never got to say "perhaps it's time to move on a bit", but life's not fair. It wasn't fair that I or those others got MM. Whether I live or die, there's a level on which that wouldn't be fair either, but MM isn't about fairness.

KMW III

2010-06-22T04:47:00.000-07:00

Katie's Midnight Walk was quite well attended again, by a much younger crowd than in previous years....

Monoclonals

2010-06-17T12:08:00.000-07:00

A new US MM patient asked me if I knew of any trials of an new agent I had not heard about previously, MDX-1106. It turns back on the immune cells which MM turns off. Only phase I trials available at present.

I also see that another monoclonal antibody, ipilimumab's phase II trial continues to look promising, but has some odd side-effects...

Updates

2010-06-02T03:33:00.000-07:00

There have been a number of updates to the site, including moving "Steve's story" to the In-Memoriam section, as a result of information received.

I have sadly heard of a number of other melanomates who have passed away or moved to stage 4 in the recent past.

Melanoma's a serious business, alright.

Katies Midnight Walk 3

2010-05-23T12:17:00.000-07:00

Katie Taylor who died 17th June 2008 aged 15 from Malignant Melanoma, the most serious and deadly form of Skin Cancer. Katie was never a sun worshipper, nor used tanning salons. We aim to raise funds into the research and development of awareness and a cure for this form of cancer. The Saturday closest to the 17th June each year we will hold a 5 mile sponsored walk, at Midnight, as planned by Katie before her death to fund this research. The Midnight Walk is well attended, and supported by many people - help to raise awareness by adding this link to your emails and blogs.

This year's KMW is on 19th June. Donate here.

NHS Evidence

2010-05-15T02:41:00.001-07:00

New NHS skin cancer evidence website is here. Not just MM, but some interesting stuff in there.

Julian Lieb M.D.

2010-05-05T07:42:00.000-07:00

I have received a few emails from someone claiming to be Julian Lieb M.D. His ranty style makes it hard to believe he is a professor of medicine (psychiatric speciality), but apparently he is. Here's an example of his off-putting style from one of the emails he sent me

"Check “antidepressants” and “MM” in Medline or Pubmed. I remember one positive in vitro study. Know what vitamins do? Vitamins are needed in trace amounts as cofactors for enzymes. Know how often “prostaglandins” are mentioned in the lay and medical media? Know what it feels like to have a gatekeeper say,” I’ll give it a read, and maybe show it to our board.”

He tells me I have a moral duty to share with my readers his belief that antidepressants cure aids, cancer, and more or less everything else.

He's given me some links to what look to be non-peer reviewed opinion pieces from him on the subject in the scientific press, which I will look into as soon as things quieten down.

My initial enquiries have yielded reports from other scientists that they have also been contacted by the professor, and they think he is a little obsessed with his pet theory (the prof doesn't like it being called that)

Doesn't mean that he is wrong, but there are worrying signs here.

Oncovex

2010-04-11T08:18:00.000-07:00

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.

Eat your greens!

2010-04-09T01:41:00.000-07:00

Much as I hate quack diet pushers, the latest from the EPIC study is not an invitation to go out an live on kebabs (hold the salad) as some papers have unhelpfully reported.

There is apparently a small protective effect from vegetables on certain cancer types (melanoma is incidentally not one of the types).

Vegetables and fruit aren't going to cure any cancer, and the harder you look for the effect, the smaller it gets*, but it's still worth having.

But then, so is the odd kebab. Let's not go nuts. Or vegan. As if there was a difference.

* so there is no point in sending me links to cherry-picked papers from the last century, as they have been superseded by these later, more powerful studies.

Neither is there any point sending me links to articles in "Medical Hypotheses", which is a non-peer reviewed promoter of quackery. Sorry quacktards!

Result!

2010-04-01T03:17:00.000-07:00

Simon Singh won today! Result! So now one can express the opinion that the British Chiropractic Association is a body whose purpose is to promote bogus treatments with no scrap of supporting evidence without fear of libel action.

So I'll take the opportunity to do just that. The BCA promote bogus treatments for which there is not a scrap of supporting scientific evidence.

They are not on their own- I can see no difference between them and the homoeopaths, acupuncturists, Gerson pushers, crystal healers, and the other varieties of quacks preying on melanoma patients.

April Fools?

2010-04-01T00:49:00.001-07:00

So the Sunsmart campaign has picked a good day to get started, with this press release. Are melanoma patients then all April fools?

The Sunsmart message is based in fact, and is carefully written, but the media messages derived from Sunsmart often cross the line into seemingly blaming all MM patients for giving themselves a "lifestyle" cancer.

No one can know what caused an individual case of MM, and the evidence against UV in MM is not as strong as for other skin cancers. I'm not suggesting we ignore the standard advice on UV exposure, but don't let anyone blame you for having MM.

Weasel Words

2010-03-26T04:17:00.000-07:00

Another illiterate quacktard has written in, to plug his overpriced fruit drink as a cure for cancer, and complain semi-incoherently about my treatment of killer quack Tullio Simoncini as follows:

"Now that's typical of you to discharge accomplishments. It is common knowledge about the pH balance in the body promotes an acidic or alkaline environment. Cancer CANNOT exist in a alkaline rich and oxygen rich environment. Legally we as practitioners cannot claim a cure, but the evidence is overwhelming. You on the other hand, leave no name nor any of your credentials. "The comment's author links to his quack products site, hoping that I'm going to send cancer patients there to be fleeced.

I'm not sure what "discharge accomplishments" means. Any suggestion that Simoncini has achieved anything other being struck off as a doctor, and killing desperately ill people is news to me. Can anyone offer objective evidence to suggest that Simoncini has achieved anything other than enriching himself at the expense of the desperate?

Neither am I aware of evidence that it is common knowledge that the pH balance in the body promotes an acidic or alkaline environment. Whatever common opinion might be, expert opinion is that the commenter's statement is confused nonsense.

"Legally we as practitioners cannot claim a cure, but the evidence is overwhelming." That sounds like you are in fact claiming a cure. If you were in the UK, that would be a criminal offence.

Someone who is attempting to sell overpriced fruit-juice to cancer patients with a promise it will cure them describing themselves as a "practitioner" also seems a new low to me, in a field already lower than snake-shit. Congratulations!

The evidence is in fact underwhelming in the extreme to scientists and qualified medical practitioners. Unless someone would like to offer scientific evidence in support of the acid/alkaline theory of disease?

As far as withholding my name is concerned, I have no wish to be subject to further legal harassment by libel tourists acting on behalf of quacks. I am a cancer patient, and harassing me just shows how callous quacks are.

I make no claims to personal medical expertise, but merely link to the opinion of those who are qualified.

Look, stupids-either show me the evidence which backs your outlandish claims in a peer-reviewed scientific journal, or expect your ill-informed comments to be either simply rejected or held up to public ridicule.

BRAF Inhibitors

2010-03-26T04:07:00.000-07:00

I hear a rumour from fellow patients that GSK's "me-too" BRAF inhibitor is better than PLX4032. It seem that this is partly because of the account given by this MM patient as to the lack of a complete cure given by PLX4032.

I have heard a few other anecdotal accounts from patients on BRAF trials of this nature, but these do not contradict the previous trials at all. Only a very few people in the initial trials got a complete response. Whilst overall response was way higher than for the gold standard DTIC, this is a promising cancer drug. The very best cancer drugs we have for any cancer cure a tiny fraction, and give others a bit more time, ideally with a reasonable quality of life.

Back when I was diagnosed there was just DTIC, with its 15% response rate, and no chance of a cure. Now we may have a number of drugs with up to a 60% response rate and a small chance of a cure. Progress has seemingly been made.

We can't tell a thing from internet anecdotes in the meantime, other than the drugs aren't a complete bust so far. I can remember some promising-looking drugs which anecdotes made clear in short order were not going to hit the mark.

What needs to be added?

2010-03-19T00:51:00.000-07:00

Some insane and illiterate comments I have received recently (web addresses deleted) in support of Tullio Simoncini and another quack are worthy of reproduction:

Hello,

Do you have any evidense that what you say is true? Are you a doctor that profits from melanoma patients?I have spoken with several people who have cured their melanoma with the Iodine solution.The theroy should not matter if the therapy works, and cost almost nothing, and The Itakian doctor makes no profit from teaching pateints. Logic shows that you are the quack who seeks to protect your profits by such claims without any merit.

I can find no facts to be true from you, what I have researched is that Dr simoncini had tried to help a cancer patient who was in very late stage cancer and was in very bad condition because of chemotherapy. He did not have the chance to try therapy because the patient had died trying to recover from the chemotherapy. Dr. Josewph Gold has been put through almost the same attcks by the Cancer industry, Ifeel very sorry for the Doctors who are attacked by corrupt people like you ( for profit cancer Doctor)

Iodine treatment for Melanoma is almost free and Dr. Simoncini makes no money for this help. Are you a cancer doctor that is theatened by this free cure? You can still find work in Mcdonalds

Perhaps something does need to be added. The Dr. Gold mentioned by the nutter is the main proponent of hydrazine sulphate treatment of cancer, despite all of the evidence showing it to be of no benefit. He is a real doctor, hasn't been convicted of killing anyone (though there has been a death as a result of hydrazine treatment). I can see clear blue water between someone like Dr. Gold who is arguably merely mistaken, and an unrepentant killer like Simoncini.

This blog has moved

2010-03-12T05:37:00.001-08:00

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Cancer Code Cracked?

2010-03-11T12:25:00.000-08:00

More duff reporting of melanoma stories last Sunday, this time by the Sunday Express, reheating a years-old story, and blowing more or less groundless speculation by scientists up into the most important discovery since chemotherapy. CRUK comment here. Nutshell? It's cobblers.

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 Brian Clement 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 those bits, 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.

Masaru Emoto and Quantum Hogwash

2009-08-24T02:07:00.000-07:00

Catherine over on What Now has drawn my attention to someone who has posted a link to the claims of Masaru Emoto, a Japanese author who some wrongly believe to have scientific qualifications.

No doubt it will be deleted, but it's so delicious, I'll reproduce it here:

"I thought this might be of interest to someone out there, I am not saying is works or it doesnt. But it might help someone, so thought I would share it......just in case. At a molecular level we are all basically the same, the theory that everything in the Universe is affected by vibrations, positive and negative, even down to our thoughts and music is not an old one. A guy by the name of Dr. Masaru Emoto has been researching the effects that words and vibrations can have on water. As people are made of roughly 70% water, following that train of thought, it stands to reason that we as people might be effected too, at some point along the chain.

Here is the website if its of any interest anyone. I got interested after researching Quantum Mechanics. Now I find myself writing things like 'Love, happiness and healthy' on my arm to create a positive vibration on the water particals circulation my body. I find it an interesting idea. My hope is that this little note might do some good to someone. I dont want to offend anybody and that is not my intention. Love, Happiness & Healing to everyone and anyone reading this."

Far Out! Mr Emoto is one of my favorite nutjobs. He claims that he can photograph the effect on water of human thoughts and emotions. He was featured in the sneaky film "What The Bleep Do We Know" which attempts to show that science supports alternative medicine and all other things spacecadet by mixing a tiny bit of science with a truckload of flapdoodle, because essentially "like, what the **** do we know maaan, it's all like..quantum. Like, wow!"

This film (which is officially classified as a work of fiction and was produced by people from a number of Indian based religious cults) appears to be the source of the post author's research into Quantum Mechanics. It has been suggested that he needs 'sucker' tattooed on his arm, rather than 'inspirational' words, and who am I to disagree?

"What the Bleep" is a religious recruiting film, and nothing whatever to do with science, but like the X-files, hippies seem to think it is a science documentary.

A number of supposed scientists are featured in the film, some of whom like "Dr" Emoto are quite clear about the fact that they are not scientists in answer to a straight question. Of course in this film no one asks him that question.

Some of them like Richard Alpert are not so clear that they used to be sort of scientists before they took many large doses of hallucinogenic drugs, were fired from academia for giving their students magic mushrooms, and now plug Hinduism under the name of Baba Ram Dass.

And the overwhelming majority of the rest of them are a bit quiet about the fact that they are proselytising for the religious cults who employ them.

But let's look at Emoto's claims before we move onto the more general world of quantum hogwash.

Has Mr Emoto published a single paper in any scientific journal? Why yes, he has. A single paper.
Published in a journal of which his co-author was editor in chief.

It claims that focussed positive intentions in Japan led to measurable differences in the pleasingness of crystal structures in America.

As the results of this experiment would seem to show a clearly measurable psychic effect, they were invited to claim James Randi's million dollar prize for such a demonstration by repeating the experiment with real scientists watching.

Looks like they don't need a million dollars, as they seem uninterested in claiming the prize. Or their experiment will not stand up to detailed scrutiny.

But what other claims does he make, for which he has produced no scientific evidence whatever? That's right, water can read, in both English and Japanese.

So, there is no verifiable scientific evidence to back this, and Mr. Emoto is not a scientist. He is a muddle-headed fantasist. Bless!

The energised/clustered/activated/otherwise special water nonsense which Emoto says he is photographing is however the basis for more serious sorts of quackery. I've seen curative claims for all sorts of magic water on cancer boards, often with what look to the general public like sciency stuff as backing.

And of course, clustered water is used by homoeopaths to explain the mechanism behind homoeopathy, but of course before we look for an explanation of an effect, we'd need to see an effect. Homoeopathy has no effect above placebo. Fact.

The idea of "quantum vibrations" being a scientific explanation for the healing power of prayer, reiki, and other forms of quackery has the same problem. In the absence of an effect, no explanation is required.

Quantum mechanics explains some of the very weird effects we get at very small scales. It does not explain them all, and physics is presently reaching for an explanation for everything we see in experiments which operate on very large and a very small scales.

At these very large and very small scales, things do not act as they do in everyday life, and a great mass of speculative theories are produced. Some of these are known in scientific circles as "physics porn". They are speculative, and without any experimental backing. None of them support anything. They do not even support themselves yet.

Quantum mechanics applies at a particular, incredibly tiny scale. It has no more relevance to the human scale of operation (and consequently medicine) than Einstein's theory of relativity, but it has been constructively misunderstood to seem to back religious ideas.

Sorry, hippies, go a bit steadier on the magic mushrooms in the next life. Peace out!

Exercise

2009-08-20T07:57:00.001-07:00

Someone kindly sent me this article yesterday on exercise and cancer. There does seem to be some reasonable evidence that exercise can reduce your chances of getting breast and bowel cancer.

It is also true that dietary factors seem to be associated with getting various cancers.

However, for those of us who already have/have had cancer, what part do diet and exercise play in preventing recurrence? The Swedish study in the first link showed that men who did exercise and got cancer were more likely to survive it, but the study had quite a few flaws, and the newspaper article exaggerates the strength of the evidence. Here's what the NHS think of the study.

So there is presently no real evidence that the standard diet and exercise advice given to the general public isn't also the best advice for cancer patients.

Yes, there is a good chance that diet and exercise play a part in some bowel and breast cancers, but we should be careful about consequently branding them lifestyle cancers as many seem to for Melanoma.

I also object to the partners of cancer patients who bully them (and any other cancer patients they can get to listen) into doing excessive exercise and eating a miserable diet in the hope of preventing recurrence.

There's no evidence that it has any effect on outcome, other than perhaps in Swedish men with certain cancers, and depriving people of the comfort of good food will do no good to their quality of life.

I remember one woman who boasted on the melanoma board that her husband was eating only brown rice and cold gravel and cycling some enormous distance every day right up until he dropped dead, and aggressively recommending that we followed his example.

She didn't appreciate us pointing out that it had done her husband no good at all, and that frankly a kebab now and then wouldn't go amiss.

Diet and Cancer

2009-08-19T10:09:00.000-07:00

Now, I'm not saying that food does not have health benefits. If you don't eat it you will die, and following the FSA recommendations on diet is only sensible, BUT there is no evidence whatever that any diet affects the course of cancer.

That is not an overstatement of the position. That is a fact. The middle ground does not lie between sense and nonsense.

I may be angry, but I am right. As for the less angry pluggers of quackery on What Now - what is it that they are selling you with their mock humility? Harmless diet tips? Nope:

The canceractive website, books and publications of Mr Woolams (as plugged repeatedly by "Poet40") make Woolams lots of money from desperate people by promoting the following quack treatments known to be actively harmful (follow the links for scientific medical opinions):

Laetrile
Gerson Therapy
Gonzalez Therapy
Hulda Clark's Cure for all Cancers

They also promote more or less all quack therapies, including the following worthless crap:

Carctol
Alkaline Diet
Shark Cartilage
Ozone
VEGA Diagnosis

They also promote (amongst others) the following cretinous ideas, which are obviously unsupported by any real world evidence other than the mutterings of acid casualties, and those hoping to exploit sick and desperate people

Kirlian Photography/Auras
Electrochemical smog

Woolams' publications also plug a number of unlicensed quack clinics in Mexico. They are not in Mexico as Woolams claims because the staff are Mexicans. They are in Mexico because they are offering cancer patients expensive but worthless "treatments" which would seen them prosecuted in the US or UK .

Now, the publications are hedged all over with disclaimers, but mountains of worthless anecdotes are offered which support these various brands of quackery. Poet40 takes his cue from these publications, "offering ideas for debate", and seeming terribly reasonable. But these are not reasonable ideas, and the poet is not a man of reason.

He has said on the WN forum that he believes himself to have Electromagnetic Sensitivity. ES is not what its sufferers imagine it is. It is a mental illness which is probably curable by cognitive behavioural therapy.

So I get mad when I see people ripping off cancer patients, but I am backed by all scientific evidence, and the poet seems reasonable but is in fact mentally ill.

This is clearly not an area to judge who is right by who seems nicest. Not when your life or that of your loved one is on the line. Get the facts.

BTW, Homeopaths are not a good source of facts. Homeopathy is bunk, and homoeopaths are therefore know-nothing quacks.

Note that my personal qualifications are irrelevant, as I am simply linking here to the opinions of qualified medical experts.

Zen Oxygen

2009-08-17T02:10:00.000-07:00

Someone mentioned "Zen Oxygen" on the WN board this morning as another miracle immune booster, and Carol B suggested that the poster looked at my blog for answers. I'll take that as a cue.

"Zen Oxygen" is nothing to do with Zen, that's just one of the words marketing people stick onto names to make them sound all mysterious and oriental. Zen just means "meditation".

What "Zen oxygen" actually is, is oxygen enriched air with more than a faint aroma of bullshit.

The promotor's website has a long screed making all sorts of claims, backed by all sorts of supposed doctors, and quotes from beauty magazines. Its claims are unworthy of detailed consideration, because of the following basic facts:

1. Does breathing high oxygen concentrations boost the immune system or otherwise promote health? Afraid not, on the contrary, is increases the amount of free radicals in the body, promoting tissue damage and possibly cancer.

2. Oxygen therapy is not novel, but has played a major part in the inglorious history of quackery. We know all about it. It does not work. It is quackery. End of.

If a cancer patient wanted to do something proactive, as well as taking what conventional medicine offers, moderate exercise would be a good place to start, especially in natural surroundings. Research suggests this may well both boost mood, and reduce the chance of recurrence.

Or you could actually try Zen, the real kind rather than the marketing version. Evidence suggests that it may help cancer patients to handle the stress.

Of course both of these things involve a bit of hard work, rather than being a product which you can buy....

Turmeric

2009-08-14T03:04:00.000-07:00

Yesterday's attempt to promote turmeric as a cure for cancer on the What Now board using a mass of inconclusive, weak, and badly designed studies has been deleted by the admins, but the woman responsible is all over the internet with it today.

There were a lot of studies in the pile, but science doesn't weigh the evidence for each side in a scale, but ranks it in terms of its strength.

So what does the evidence really tell us about turmeric?

1. That the strongest of the weak evidence available for anti-cancer effects is not for turmeric itself, but for a purified component, curcurmin.

2. That the strongest of the weak evidence for anti-cancer effects is in cell culture, rather than in complete living organisms.

3.That curcurmin is hardly absorbed from food at all in humans.

4. That is is not possible to attain the levels of curcurmin in the human body which show possible anti-cancer effects in cell culture without taking at least 110g of curcurmin daily.

5. That is is presently just as as likely that curcurmin promotes some cancers as suppresses others.

Here's how Cancer Research UK weigh the evidence to date.

They DO NOT recommend using turmeric supplements. Note the warning at the end that internet turmeric supplements are contaminated with nimusulide, an unlicensed medicine which can cause liver damage. Despite this, the What Now poster promoted a document which contains links to places to buy these supplements on the internet.

The ultimate source of the misleading "evidence" was apparently Christian Wilde, (a songwriter with no scientific or medical qualifications whatever) who has made himself a long-time promoter of alternative medicine, especially turmeric.

She is now hard at work promoting him, his books and his half-baked ideas on every cancer forum she takes part in because he "validated" (read flattered) her and her "proactive" approach in which she labours under the delusion that she and her husband are making medical history.

Of course in the American medical system, you can have any treatment you want if you have the money, then convince yourself that the quack treatments did the job rather than the proven ones, as this unfortunate woman has done. The medics involved will also avoid contradicting you on these issues as they are your employees, and are commercially interested in you having as much medical treatment as possible.

She consequently really thinks that an unqualified member of the general public armed only with a directory of quack sites knows more about cancer than people who have spent their entire lives studying it.

Suggesting differently is bad because that would be "invalidating her", or "making her wrong" which means that you aren't very nice, and can safely be ignored. Thus at a stroke she is utterly inured against any form of reasoned argument.

If she could just keep her nonsense to herself it would be no-one's problem but her unfortunate husband's, but she consistently chooses to try and persuade others that these various quack cures for cancer are a good idea. More generally she tries to persuade them that a patient or carer's reading partial and misleading summaries of the research and the falsehoods on internet quack sites might allow them to make a helpful input to the treatment of cancer.

In fact such activity just leads to confusion, and in some cases to promoting to other cancer patients supplements which could cause liver damage, whilst having no proven benefit, as in this case.

Doctors may not know everything, but you'd have to be unbelievably arrogant or stupid to think they don't know more than the general public, however many quack sites they have read.

"Nanobees"

2009-08-11T03:12:00.000-07:00

I was sent this article from the Telegraph this morning about the application of "nanobees" to cancer treatment which included a melanoma cell line. The original paper is here.

It's another approach showing early promise (in mice without immune systems deliberately infected with cell cultures originally derived from melanoma tumours), but it's a long, long way from there to a working treatment for human Melanoma.

"German New Medicine"

2009-08-08T11:15:00.000-07:00

Here's a new one on me, which was being promoted on Cancer Chat by someone calling themselves "javamate"- Hamer's New Medicine, aka German New Medicine.

Admins removed the content quickly, which advocated cancer patients stopping conventional treatment in favour of GNM, originated by a "Dr." Ryke Geerd Hamer.

The poster subsequently came back on the board whining in a self-pitying way about being censored, as if they had an inalienable right to promote what amounts to expensive suicide to cancer patients with lies.

Here's the truth of the matter-"Dr" Hamer was barred from practising medicine, and has since twice served substantial prison sentences for medical malpractice, involving the deaths of several patients he "treated" whilst barred from practice.

The parents of a child he "treated" also served eight month prison sentences for letting him treat their child, leading to her death.

I think it fair to conclude that Dr Hamer is a quack of the first degree. See the link for a detailed explanation of why from a specialist cancer surgeon. Or this one for what the Swiss authorities found.

Could there be a clearer case of quackery? Yet it seems that once again those who have been duped subsequently become willing accomplices to the scam.

Beating Cancer With Nutrition

2009-08-07T05:32:00.000-07:00

There's a simple way to pass on seventy seven kinds of muddleheaded nonsense to cancer patients at a stroke. Simply recommend that they read one of the books which push quack treatments for cancer with lies, such as Patrick Quillin's " Beating Cancer with Nutrition".

Over on the What Now board "habubrat" has been ploughing this furrow for years without getting banned. Since they changed to rules of the site to disallow direct promotion of alternative therapies, she has started saying she doesn't believe that it's really about beating cancer, but just about healthier eating. Just another of her arsenal of quackery promoting tricks.

So what's wrong with her disingenuous claim? Just two things-the book which she recommends explicitly and repeatedly claims to be about curing cancer, and its recommendation do not constitute healthy eating.

Let's ignore for now the fact that anyone purchasing the book is essentially purchasing an extended advertisement for the author's "specially formulated" all in one quack supplement, and the fact that the book endorses a number of other cancer quacks as supposed "experts", whom it recommends the patient contacts for further information.

So how does Quillin claim to be able to cure cancer with nutrition? Basically, like all of these books, he lashes together some information on things which might help prevent us from getting cancer, with some things which looked promising but have have been proven subsequently not to help, and some utter nonsense from the lunatic fringe.

Mr Quillin's particular blend of bullshit is as follows:

Essiac tea cures cancer
Sugar causes cancer
Guided imagery can cure cancer
Probiotics/yoghurt can cure cancer
Positive mental attitude can cure cancer
Cancer is caused by unresolved mental traumas
Cancer is caused by yeast
High dose vitamin C can cure cancer
High dose vitamin E can cure cancer
Drinking only water purified using activated carbon or reverse osmosis cures cancer
Cancer is an anaerobic growth, breathing exercises can cure cancer
The following supplements cure cancer:
lactoferrin
transfer factor
whey extracts
aloe extracts
mushroom extracts (Maitake D-fraction)
yeast cell wall extracts (1,3 beta glucan)
IP-6
MGM-3
ImmKine
fish oil
borage
primrose oil
flax oil
conjugated linoleic acid
shark liver oil
calcium
magnesium
chromium
selenium

Oh, and of course-a daily bowel movement is essential, and laxatives to should be used if "necessary" to achieve this

There's the problem when someone persists in promoting a book like this to cancer patients. In order to show why this book is harmful nonsense, you need to write a post as long as this one to show why. Ignoring the fact that most people will stop reading before the case is fully made, let's have a look at these claims.

"Essiac is claimed to be a miracle cure for cancer. There have been reports over the years of cancers completely disappearing after taking Essiac. But in many cases, it turned out that either the diagnosis was wrong in the first place, or that conventional cancer treatment was more likely to have been the reason for the 'cure'. There is no scientific evidence to show that Essiac can treat, prevent or cure cancer or any other serious illness in humans". CRUK.

It is claimed by many in the field of quackery that sugar feeds cancer preferentially. This has no foundation in fact, but actually originates in an email hoax. A detailed explanation can be found here.

Guided imagery has not even been proven to help cancer patients feel better, let alone cure cancer. CRUK.

Yoghurt and probiotics are not proven to boost the immune system in any way (contrary to what you may have seen in adverts), and neither prevent nor cure cancer. Duh.

Positive Mental Attitude has no effect on cancer outcome. Sorry,hippies. Cancer is not caused by being on a downer, neither does pretending to be happy cure cancer.

Cancer has no connection to yeast. Quillin has borrowed the idea from Tullio Simoncini, convicted killer of cancer patients.

Can Vitamin C cure cancer? 'Fraid not. It can in fact block the effect of chemo and radiotherapy.

How about vitamin E? Half the dose suggested by Quillin at least did no active harm in studies. But it had no protective effect, and even if it had, that would have made it a preventive agent, not a cure.

Tap water does not cause cancer or any other illness, so further treatment is unnecessary. Suggesting to cancer patients that anything other than lab quality water may kill them and their loved ones is attempting to turn them into a paranoid crank. This does nothing good for their quality of life.

The "reverse osmosis" process actually removes essential minerals from the water. In countries where they have to drink seawater purified by RO, they remineralise the water before sending to the consumer. Drinking such water exclusively may well be harmful.

"Cancer is an anaerobic growth". Oh no it's not. If this were true, cancer would be very easy to treat. All of our cells can live with limited supplies of oxygen. Increasing oxygen levels does not favour normal over cancer cells, and breathing exercises would not be the way to do it if this were true.

As well as being nonsense in itself, this falsehood paves the way for the more extreme beliefs of a large section of the quack community, namely hyperoxygenation therapy. The recent research which shows that keeping oxygen levels in treatment resistant tumours at normal levels with certain drug treatments removes their resistance to conventional treatment does NOT contradict this.

Calcium does not cure cancer, this is yet another quack's sales pitch which Quillin has borrowed.

Transfer Factor is the utterly ineffective basis of an internet pyramid sales scheme, subject of an FDA warning letter for misleading medical claims.

And all of those other supplements it recommends, as well as the claims I have not mentioned for specific foods? I could give details of how every single one of them has no proven activity, but you must get the idea by now, this book is basically a listing of every crank "cure" for cancer the author could find.

No medical professional would suggest that a cancer patient takes any supplements without discussing it with their medical team. CRUK.

This book is utter rubbish from start to finish. Untruths, half-truths, and harmful nonsense.

"Healthy diet advice", My Arse!

Sense about Science

2009-08-04T08:00:00.000-07:00

The law has no place in scientific disputes

We the undersigned believe that it is inappropriate to use the English libel laws to silence critical discussion of medical practice and scientific evidence.

The British Chiropractic Association has sued Simon Singh for libel. The scientific community would have preferred that it had defended its position about chiropractic for various children's ailments through an open discussion of the peer reviewed medical literature or through debate in the mainstream media.

Singh holds that chiropractic treatments for asthma, ear infections and other infant conditions are not evidence-based. Where medical claims to cure or treat do not appear to be supported by evidence, we should be able to criticise assertions robustly and the public should have access to these views.

English libel law, though, can serve to punish this kind of scrutiny and can severely curtail the right to free speech on a matter of public interest. It is already widely recognised that the law is weighted heavily against writers: among other things, the costs are so high that few defendants can afford to make their case. The ease and success of bringing cases under the English law, including against overseas writers, has led to London being viewed as the "libel capital" of the world.

Freedom to criticise and question in strong terms and without malice is the cornerstone of scientific argument and debate, whether in peer-reviewed journals, on websites or in newspapers, which have a right of reply for complainants. However, the libel laws and cases such as BCA v Singh have a chilling effect, which deters scientists, journalists and science writers from engaging in important disputes about the evidential base supporting products and practices. The libel laws discourage argument and debate and merely encourage the use of the courts to silence critics.

The English law of libel has no place in scientific disputes about evidence; the BCA should discuss the evidence outside of a courtroom. Moreover, the BCA v Singh case shows a wider problem: we urgently need a full review of the way that English libel law affects discussions about scientific and medical evidence.

Sign It Here