It's nice to be noticed

Remember how I alluded to the fact that perhaps I've been doing a little too much blogging about dichloroacetate and the unscrupulous "entrepreneurs" who are taking advantage of desperate cancer patients to sell the stuff to them? Well, I can't resist mentioning something truly amusing that I just noticed.

The "health freedom" warriors and "entrepreneurs" responsible for The DCA Site and BuyDCA.com appear to have noticed me and my humble efforts.

How do I know that they've noticed me? Remember the long exchange between Heather Nordstrom and two people questioning the ethics and legality of selling a drug that has only shown promise in animal models of cancer but has yet to be tested in humans for cancer from which I quoted liberally and on which I commented? To refresh your memory, it was an exchange between someone going under the 'nym Sprite8 and another going under the 'nym CJohn Zammit, both of whom questioned what Heather and her stepfather were doing in selling DCA from an unclear source to desperate patients. One of them, CJohn Zammit, begged her not to do it and to concentrate efforts on promoting rapid phase II clinical trials of the drug against cancer and (this latter part is where I part ways with CJohn and strenuously disagree) to encourage oncologists to use it "off-label."

All gone. If you click on the links in my original post, most of them don't exist anymore. Gee, you don't think that came about because of li'l ol' me, do you?

But it gets better.

Remember the disclaimer on the BuyDCA.com on the site that was such a hilariously inept attempt to deny that they were selling DCA for human use that I couldn't resist slapping it down with a little Respectful Insolence⢠(without the "Respectful" part, that is)? This is what it said on Wednesday morning:

For veterinary use only. DCA is not approved for use by humans. We are neither doctors nor veterinarians and cannot make statements about the medical condition of your pets. Please note we make no claims nor give any guarantees. The information on this site should not be considered complete, nor should it be relied upon to suggest a course of treatment for a particular individual. This information is for educational purposes only. It should not be used in place of a visit, call, consultation or the advice of your physician or other qualified health care provider, or veterinarian. Always consult with your physician or veterinarian before embarking on a new medical treatment, diet or fitness program.

This is what I said about it:

Funny, I thought BuyDCA.com was selling DCA for use in animals only. Why, then, are Heather and her family making such a big deal out of mentioning physicians and treatments for individuals? It couldn't be that Heather and her stepfather are being, as I said before, disingenuous, could it? You're far too cynical; Heather is an idealist, after all.

And, joy of joys, this is what the disclaimer says now:

For veterinary use only. DCA is not approved for use by humans. We are neither doctors nor veterinarians and cannot make statements about medical conditions. Please note we make no claims nor give any guarantees. The information on this site should not be considered complete, nor should it be relied upon to suggest a course of treatment for a particular animal. This information is for educational purposes only. It should not be used in place of a visit, call, consultation or the advice of your veterinarian.

(Not surprisingly, they didn't get rid of this part of their disclaimer: "To insure the product is safe for all buyers, there can be no refunds or returns. All sales are final." Of course they are.)

In any case, notice how Heather and family blatantly eliminated any mention of the treatment of a "particular individual" (substituting the word "animal") and altered the part about not using their website "in place of a visit, call, consultation or the advice of your physician or other qualified health care provider, or veterinarian." Gee, you don't think they're trying to weasel out of responsibility or to cover their tracks that made it obvious that they were selling the drug for human use? It's a good thing that I foresaw this rather obvious possibility and made it a point to download a web archive of the relevant pages to which I had linked, isn't it? Otherwise, I might have felt very guilty for tipping them off.

You know, it warms the cockles of the heart to know that one's efforts are having an effect, however small. In any case, do me a favor: Please click on The DCA Site and BuyDCA.com repeatedly, to let Heather know that her attempts to erase the evidence of her lies have been noticed. And, Heather, if you're reading this, please reconsider what you're doing. Selling a non-FDA-approved drug that's never been tested in humans against cancer to desperate terminally ill cancer patients is digustingly unethical and almost certainly illegal. Altering your website and removing inconveniently embarrassing threads from the discussion forums won't change that.

ADDENDUM: Now that I look at it again, the disclaimer is back to the old form on the front page of the site, but the new form is present on this page and pretty much every other page on the website.

Curiouser and curiouser. I wonder what "changes" Heather et al will make next.

I also notice that Heather posted a longer and more extensive disclaimer on the DCA site, listed as having been edited on 2/24/07 at 2:49 AM EST. Some excerpts:

We do not advocate the use of DCA for human cancer at this stage and time. We are aware that DCA is being used for illness in animals and is available to consumers through pet websites for that purpose. We are aware that DCA is used in humans for rare metabolic conditions. We are aware that DCA has not been proven to be a cure for cancer in humans and it is illegal to claim that it is a cure, and that in the USA it is illegal to claim a cure for cancer other than the FDA approved methods.

No, Heather, it's not illegal to claim a cure for cancer. It's illegal to sell or administer to humans a drug or compound that you claim to be a "cure for cancer" when there is no scientific evidence to show that it is a cure for cancer in humans. Believe me, if DCA shows promise against cancer in the clinical trials being arranged, you can bet that the FDA will approve it for use in cancer pretty fast. I'm pretty sure that it's also illegal to sell a drug like DCA "for pets" when it is painfully obvious from the forums at The DCA Site that no one visiting there is looking for DCA to treat their pets with cancer. The only people looking for the drug on your forums either have cancer themselves or have loved ones with cancer. You know that damned well. Nice altie conspiracy-mongering, though.

More disingenuousness:

You should not use the information on theDCAsite for diagnosing or treating a health problem or disease, or prescribing any medication or other treatment. You should always speak with your physician or other healthcare professional before taking any medication or nutritional supplement, or adopting any treatment for a health problem.

Information and statements regarding dietary supplements have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure, or prevent any disease.

If you do anything recommended on this web site, without the supervision of a licensed medical doctor, you do so at your own risk.

Information contained on theDCAsite is suppose to be educational and general in nature and is not meant to be a substitute for the advice provided by a health professional.

This page and any other page available on theDCAsite may reflect personal opinions of the author, which are not necessarily shared by the owner of theDCAsite.

[...]

Nothing on this site should be considered a cure for cancer or any other "incurable" diseases.

Give me a break.

ADDENDUM #2: I've also noticed that Heather has stripped out the reference to using "laser" light to drive the synthesize of DCA from this page. Hilarious!

ADDENDUM: Walnut has posted his critique on Daily Kos as well.

All Orac posts on DCA:

  1. In which my words will be misinterpreted as "proof" that I am a "pharma shill"
  2. Will donations fund dichloroacetate (DCA) clinical trials?
  3. Too fast to label others as "conspiracy-mongers"?
  4. Dichloroacetate: One more time...
  5. Laying the cluestick on DaveScot over dichloroacetate (DCA) and cancer
  6. A couple of more cluesticks on dichloroacetate (DCA) and cancer
  7. Where to buy dichloroacetate (DCA)? Dichloroacetate suppliers, even?
  8. An uninformative "experiment" on dichloroacetate
  9. Slumming around The DCA Site (TheDCASite.com), appalled at what I'm finding
  10. Slumming around The DCA Site (TheDCASite.com), the finale (for now)
  11. It's nice to be noticed
  12. The deadly deviousness of the cancer cell, or how dichloroacetate (DCA) might fail
  13. The dichloroacetate (DCA) self-medication phenomenon hits the mainstream media
  14. Dichloroacetate (DCA) and cancer: Magical thinking versus Tumor Biology 101
  15. Checking in with The DCA Site
  16. Dichloroacetate and The DCA Site: A low bar for "success"
  17. Dichloroacetate (DCA): A scientist's worst nightmare?
  18. Dichloroacetate and The DCA Site: A low bar for "success" (part 2)
  19. "Clinical research" on dichloroacetate by TheDCASite.com: A travesty of science
  20. A family practitioner and epidemiologist are prescribing dichloracetate (DCA) in Canada
  21. An "arrogant medico" makes one last comment on dichloroacetate (DCA)

Posts by fellow ScienceBlogger Abel Pharmboy:

  1. The dichloroacetate (DCA) cancer kerfuffle
  2. Where to buy dichloroacetate...
  3. Local look at dichloroacetate (DCA) hysteria
  4. Edmonton pharmacist asked to stop selling dichloroacetate (DCA)
  5. Four days, four dichloroacetate (DCA) newspaper articles
  6. Perversion of good science
  7. CBC's 'The Current' on dichloroacetate (DCA)
Categories

More like this

Yesterday, I wrote about how anti-science pro-"intelligent design" kook extraordinaire Dave Springer (a.k.a. DaveScot) has taken to promoting dichloroacetate as a treatment for cancer and one website in particular, The DCA Site that claims to exist to "help inform people of the exciting research…
Do you remember dicholoroacetate (DCA)? In a letter dated 24 September (PDF here), Dr Evangelos Michelakis of the University of Alberta announced that his group had received approval from Health Canada and U of A's institutional review board to begin a Phase II clinical trial of dichloroacetate (…
It sure took the FDA long enough, nearly five months, but it finally acted. It finally shut Jim Tassano down, as this notice on TheDCASite.com states: Two agents from the FDA visited us on Tuesday,July 17, 2007 and ordered that we stop making and selling DCA. Unfortunately, the site www.buydca.com…
Given all the verbiage (see the link list below) about dichloroacetate (DCA) that I've spewed into the blogosphere decrying the hijacking of a promising cancer therapy by conspiracy-mongers (it's the cancer cure "big pharma" is keeping from you because they can't make money on it) and opportunistic…

Boo hoo.

Doctors killed my dad. But an ambulance chasing lawyer in a low rent office that everybody made fun of got mom a tremendous settlement.

Now part of the money will pay for my law school education to follow in the ambulance chasers footsteps.

According to the AMA, there is plenty of business to be found!!!

By Legal Eagle (not verified) on 24 Feb 2007 #permalink

Next step-- buy some of her DCA and send it to a real lab for chemical analysis?

By Melissa G (not verified) on 24 Feb 2007 #permalink

Next step-- buy some of her DCA and send it to a real lab for chemical analysis?

Why bother? The question of quality is a side issue. Suppose it's what they claim - sodium dichloroacetate at something like 170 mg/mL, with 99+% purity? Would that make their actions OK? No.

Furthermore, even if one sample meets expectations, that tells us essentially nothing about any other sample. You need assurance that every sample of every batch will meet expectations. That's why the FDA mandates Good Manufacturing Practices for drugs. GMPs include all kinds of controls on how you make things, test them, label them, store them, ship them, etc.

Do you think these people do any of that? I don't. Any tests you run will only tell you how good the tested samples are. They will not give any assurance on overall product quality.

Isn't it funny how the same people who scream about "big pharma suppressing cancer cures, which must be made available AT ONCE by any means necessary", and who don't seem to want to wait for dose-response, efficacy and safety trials, seem to be the same ones who line up to crucify "big pharma" every time something like the Vioxx fiasco happens?

By Justin Moretti (not verified) on 24 Feb 2007 #permalink

I'm very happy with my primary care veterinarian, and I've gotten excellent care from other veterinarians in the Kaiser system, even though it is an HMO.

I've encouraged everyone I know to report these sites to the FDA for their unscrupulous business practices. Perhaps we're making an impact.

While I realize, Orac, that covering DCA so heavily for the past few days was not your intent, I'm thankful that you did; a friend of mine brought up DCA the other day in a conversation and I was able to use your blog to clue her in to what was really going on instead of what she'd heard from her altie relatives.

By Brian Ford (not verified) on 24 Feb 2007 #permalink

Not only the disclaimer is now back to its original language, the price of DCA on the BuyDCA.com website went up by 50% ($30.00 for 41 g instead of the original price last week of $20.00 for 41 g). Eventually, many pets, especially big ones (150 lb. and over), are suffereing from cancer.

I have reported these "entrepreneurs" to the FDA and I recommend that every law-abiding reader of this blog will do the same.

By S. Rivlin (not verified) on 24 Feb 2007 #permalink

Not only the disclaimer on the BuyDCA.com website is back to its old language, the price of their product has gone up by 50% ($30.00 /41 g DCA instead of $20.00/41 g DCA). Eventually many pet owners, especially of the big kind (150 lb. and over), have discovered that their pets are suffering from cancer.

Every reader of this blog should report these "entrepreneurs" to the FDA as I have done.

By S. Rivlin (not verified) on 24 Feb 2007 #permalink

Sorry for the double posting!

By S. Rivlin (not verified) on 24 Feb 2007 #permalink

Hm. Just out of curiosity, did anyone manage to make a mirror or partial backup of the site's previous state?

In patent, I've seen the phrase "for use in mammals such as humans" when describing the usefulness of a potential drug. Which, strictly speaking is true. But I would hope this phraseology wouldn't end up on the DCA sites.

Grammar Nazi senses tingling...

"To insure the product is safe for all buyers,...

I have to wonder: Who is their agent? Is this similar to malpractice insurance?

From the website:

It is clear from the research that one must be very careful about not going too high with the dosage of DCA. The Michelakis patent states a dose range of 10 mg/kg to 100 mg/kg. We strongly suggest keeping the rate you give your pet at the lowest dosage of 10 mg/kg. Dosages of 25 mg/kg in humans were sometimes well tolerated and sometimes not, causing instances of peripheral neuropathy.

Emphasis added.

Gee, I wonder why they have that stuff about dosages for humans? Since it's not for humans, there is no need to have this information, right?

Something else struck me as somewhat odd too.

All bottles contain the same concentration of sodium dichloroacetate. Use one drop per 2 pounds of body weight for the 10 mg/kg dose. Use two drops per 2 pounds for the 20 mg/kg dose.

Bottle Size Price
Small size (for 15 pound animal) Approximately one ounce bottle contains 4 grams sodium dichloroacetate in solution.
$10.00

Medium size (for 50 pound animal) Approximately 4 ounce bottle contains 14 grams sodium dichloroacetate in ageous solution.
$15.00

Large size (for 150 pound animal) Approximately 8 ounce bottle contains 41 grams sodium dichloroacetate in aqueous solution.
$30.00

For the small size (although 15 pounds seems a lot for a 'small' animal) they say "in solution", for the medium bottle "in ageous solution" (ageous??), and for the large bottle "in aqueous solution".

That's a bit odd, but there's more. They say its the same concentration in all the various sizes, but that simply isn't true when you do the math.

Small: 4 g NaDCA/oz
Medium: 3.5 g NaDCA/oz
Large: 5.13 g NaDCA/oz

The large gives you the most bang per ounce. The large is also the cheapest by far per shot.

Small: $2.50/g NaDCA
Medium: $1.07/g NaDCA
Large: $0.73/g NaDCA

Clearly there is a market for 150 pound animals out there. I'm sure it's only an accident that 150 pounds just happens to be about the average weight of adult human beings.

Makes me wonder who would even buy the small and medium sized bottles.

Note: One might respond that it also says 'approximate' volumes, so I'm being too picky with concentrations (depending on how close you want your 'approximate'). But I don't think these differences trivial when we're talking medicine for pets *wink-wink*, where dose is presumably important. As is accuracy.

The internet remembers.
I am alternately amused and troubled by the power of a website to convince its author that the author has Winston Smith in their employ - only to find that Winston Smith's pneumatic disposal tubes deliver removed text not to the furnace, but the most dedicated archivers among one's enemies.

Good on ya, doc. Not only are they listening to you but they also seem to be listening to your commenters like Dave S. His bolded sentence above about "25 mg/kg in humans" has been edited to read the incomprehensible phrase, "Human trials of 25 mg/kg " and that's it. The sentence may disappear completely before too long.

I might also add that questionable sales of cancer cures are often dealt with by the Federal Trade Commission (FTC) - they've run sting operations in health food stores whose clerks offer advice on anti-HIV supplements, for example. They also seem to be better staffed than FDA. So, if S. Rivlin and others care to fill out another e-form, go to FTC Consumer Sentinel site and click on "file a complaint." It is more generic than the FDA form but is another avenue to raise awareness of another agency whose mission overlaps.

Sorry for the second post but my previous comment is being held due to too many hyperlinks. To better explain my point, go the FTC's "Operation Cure-All" site (clicking "File a Complaint" takes you to the same generic site).

Critics may claim that FDA is in cahoots with Big Pharma to suppress cancer cures and health freedom, but you can't argue with FTC's reasoning for also taking consumer complaints: "Fraudulently marketed health products can keep people from the medical treatment they need, and some can cause serious harm."

Abel Pharmboy writes:

Good on ya, doc. Not only are they listening to you but they also seem to be listening to your commenters like Dave S. His bolded sentence above about "25 mg/kg in humans" has been edited to read the incomprehensible phrase, "Human trials of 25 mg/kg " and that's it. The sentence may disappear completely before too long.

And so it has, replaced once again with the original.

And now they've added still more.

This website keeps morphing faster than Michael Jackson's face. For a group dispensing chemotherapy drugs, they are extremely cavalier about the information the people are getting. Here's something new...

So, keep the dosage low.
10 mg/kg appears to be the smart rate to use.

But what if my pet is near death, and there is no time for the low rate to have a chance to work?

I can't give veterinary/medical advice per se, because that would constitute practicing veterinary medicine without a license. But, what I can do is list some things that I would do if I had a pet in his last couple of weeks of life, when there really was nothing else left to do.

I like the part where she says she can't give veterinary/medical advice per se...when 2 sentences ago she did exactly that, "So, keep the dosage low. 10 mg/kg appears to be the smart rate to use."!

And I also like the fact she says she can list the things she'd do if there were no hope for her "pet" in the last couple of weeks...and doesn't list a thing!

So in summary, she does something she says she can't do...and doesn't do something she says she will.

Look for a new version of this website later on this morning. Good thing they're not dealing in anything important like peoples lives.

Hey, pet lovers like me would say that pets' lives are very important too. Not as important as human life, but the day my dog dies I'll be devastated.

True enough Orac. I would be the same with my cat.

A sarcastic snark on my part that didn't quite hit the mark. Should have said lives of people or their pets.

Why bother? The question of quality is a side issue. Suppose it's what they claim - sodium dichloroacetate at something like 170 mg/mL, with 99+% purity? Would that make their actions OK? No.

I imagine that if it's not what they claim it is, it would be easier to go after them legally. Fraud might be a lot easier to prove than ... illegal nutritional supplementing?

Also, it's very obvious that these people are aware that their DCA is being taken by people with cancer as a form of treatment, regardless of what all the disclaimers say. If someone dies after taking their quack treatment, could it be considered reckless endangerment, or are their disclaimers enough to forestall that? (Standard disclaimer: IANAL.)

I'm writing a thesis, so I tried my hand at making this point:

No, Heather, it's not illegal to claim a cure for cancer. It's illegal to sell or administer to humans a drug or compound that you claim to be a "cure for cancer" when there is no scientific evidence to show that it is a cure for cancer in humans.

To agree: it's unethical to profit by deriving that profit from misunderstandings of which you are aware (commission). Further, it is unethical to perpetuate that misunderstanding in order to continue to obtain profit (omission).

Kinda like B12 shots, isn't it?

BTW, you are on the blog roll. Keep up the good work.

Orac writes: "You know, it warms the cockles of the heart to know that one's efforts are having an effect, however small."

Just imagine how warm mine are given The DCA Site was started by a guy who first read about DCA in articles I wrote at Uncommon Descent.

There are now two physicians self-medicating with DCA and writing about it at the DCA site. Here's the latest comment from one of them. Don't get thrown by the big words, Orac, or the sig "blessings" which obviously makes the doctor another one of those embarrassments who might not swallow the chance and neccessity fantasies you hold dear. Then again, if he's like most medical doctors, he doesn't know a damn thing about evolution because it's totally irrelevant to practical science, engineering, and medicine. But you of course know that already even though you can't bring yourself to admit it. I can spoon feed this stuff to you if you'll stop making faces and spitting it out.

from the dca site forum:

Ideal tests for follow-up for tumor burden that are easily obtained would be the following
General markers for all tumor types:
HCG (IRMA) : (intact HCG) human chorionic gonadotropic hormone, the pregnancy hormone and "malignancy hormone,"
HCG (IMM) : (Nicked beta and beta core subunits) human chorionic gonadotropic hormone, the pregnancy hormone and "malignancy hormone,"
PHI : phosphohexoses isomerase enzyme that regulates anaerobic metabolism,
**Phosphohexose Isomerase (PHI) is an enzyme that regulates anaerobic metabolism. This enzyme is an Autocrine Motility Factor (AMF), and is one of the main cellular causes of malignancy, i.e. cell migration. It also plays a most important role in cells becoming cancerous by turning them into sugar users. It is responsible for channeling the cells into low oxygen glycolysis ie. fermentation. Because cancer cells favor anaerobic conditions PHI is an excellent marker. Take notice that this enzyme is an AMF (autocrine motility factor), causing malignant cancer spread.
This measure of anaeroobic marker might be perfect to measure the change that occurs when patients given DCA since it is the anaerobic enviroment that is disturbed when glycosis inhibited.
**The above three tests are well accomplished as tumor markers in the scientific literature, yet, not approved for that purpose. Though the Phosphohexose Isomerase seems to be a excellent marker tailored to follow DCA use.

Cost for the three test approx. $180 available through American Metabolic testing lab. The above HCG tests are specficially calibrated for malignacy monitoring and are not calibrated the same as a routine pregrancy HCG

Individual Cancer Marker follow-up
CEA : carcinoembryonic antigen, a cancer antigen, test was originally developed to monitor colon and rectal cancers. However, this test as most tumor markers, with perhaps the exception of the PSA test for the prostate gland, are not organ or site specific.
CA125 ovarian cancer
CA 15.3(27.29) Breast cancer
CA 19.9 gastric cancer
PSA and Free PSA prostate cancer

Other Markers Growth and inflamation which may be of help;

Growth Factors
TGFbeta-1(transforming groowth factor)
IGF-1 (insulin growth factor) / IGFBP3(insulin growth factor binding globulin protein 3)
Free IGF
VEGF (Vascular Endothelial growth factor)

Inflamation Markers:
Highly sensitive CRP
IL6 (Interleuin 6)
IL8 (Interleukin 8)
Tumor necrosis factor alpha

Coagulation Markers:
Fibrinogen
PaI-1
Thrombin/antithrombin
D-Dimers

Though all of this may be over kill on the testing the HCG and PHI and gives you a overveiw of total tumor burden and you can see whether it is going up or down similar to the individual FDA approved tumor markers. The growth, inflamation and coagulation factors lab tests are influneces by cancer cell growth. In order to counter the effects of these changes various nutritents ,amino acids acids or antioxidants can be used to treat specfic alteration in these values. You would be hard pressed to find conventional medicine doing such a set a blood test probable due to insurance restraints and the fact that it takes 10-15 years for a experimental blod test to become common practice in medicine i.e. homocysteine was first introduced by Dr. McCully mare then twenty years ago which until the last few years was not even considered a test to be done.

Blessings,

Omega3

Alison writes: "DaveScot's also done a bit of editing over at UD to cover his tracks. Just to letcha know."

You're full of crap. Just to letcha know. Maybe you should stick to sewing and leave reading to literates.

To all you concerned citizens notifying the FDA about The DCA Site...

I'm sure after a reasonable amount of analysis of what The DCA Site is doing the FDA will make a determination on whether or not action on your complaints are warranted. Given the usual response time of the FDA you should expect a response probably in March or April.

March or April of the year 2012.

LOL - I kill me sometimes!

Don't get thrown by the big words, Orac, or the sig "blessings" which obviously makes the doctor another one of those embarrassments who might not swallow the chance and neccessity fantasies you hold dear. Then again, if he's like most medical doctors, he doesn't know a damn thing about evolution because it's totally irrelevant to practical science, engineering, and medicine. But you of course know that already even though you can't bring yourself to admit it. I can spoon feed this stuff to you if you'll stop making faces and spitting it out.

This guy doesn't sound like an oncologist; that's for sure. (Most doctors don't know a lot about the pitfalls of tumor markers to follow cancer.) His understanding of tumor markers seems a mile wide and an inch deep, and he is making simple-minded "shotgun approach" recommendations for following tumor markers. Otherwise, he would know that the only real test relevant to his prostate cancer is the PSA level. He didn't even mention acid phosphatase (although few use that anymore). He's also wrong about CEA. It is not entirely organ-site specific, but tends mainly to be elevated in gastrointestinal maligancies and sometimes breast cancer. In any case, there are also lots of other conditions that can elevate CEA levels.

As for the rest, the only ones that have much clinical utility for following tumor burden are and are used by most oncologists are CEA for colorectal cancer and CA125 for ovarian cancer. For breast cancer, some oncologists will follow markers, but studies show that the correlation between these markers and disease burden tends to be pretty poor, making them unreliable guides at best for following disease recurrence. Ditto most of the rest of the markers listed. The problem with most of them is that they are nonspecific and even nonspecific for malignancy, with a variety of other conditions able to cause their elevation. That's especially true for the inflammation markers listed.

What is likely to happen with any patient taking his advice and getting many of these markers measured repeatedly to "follow" his tumor burden is that (1) he'll spend a lot of money and make American Metabolic Testing Laboratory and (2) will likely get confusing results, with some markers going up, others going down, and others doing nothing.

I'm sure after a reasonable amount of analysis of what The DCA Site is doing the FDA will make a determination on whether or not action on your complaints are warranted. Given the usual response time of the FDA you should expect a response probably in March or April.

March or April of the year 2012.

Given your enthusiasm, I still have to wonder if you're getting a cut of Heather and her stepfather's action in The DCA Site. Consider this: If what they're doing is so noble (or at least on the up-and-up), why are they deleting discussion threads and altering disclaimers faster than Winston Smith altered documents at the Records Department in the Ministry of Truth to conform to the government's ever-changing version of history?

Those aren't the actions of people who have nothing to hide.

In any case, I hope you're proud of your having set another set of unscrupulous "entrepreneurs" taking advantage of desperate and dying patients loose on the world. That's far worse than your advocacy for the pseudoscience of ID, because it will have real consequences for real people's health.

Oh, and say hi to Heather for me and let her know that I'll be watching.

My enthusiasm at this point is entirely contained by the set of things that piss off Orac and his loyal minions. Your consternation and frustration at being impotent in making this situation conform to your process rules is sheer delight for me. If DCA actually works it's just icing on the cake. I'm following its progress closely, on a daily basis. If and when someone has positive news about it I'm going to short the living shit out of a few companies that make expensive cancer drugs and radiation equipment. If I make any money it won't be through selling DCA, it'll be through selling short DCA's competitors. Any recommendations on publically traded companies that would be substantially harmed if DCA turns out to kill cancer in humans like it does in rodents?

I'm not sure what the rest of you blathering is based on. DCA certainly looks promising in the lab and its safety has been well established in decades of clinical use. It works against a well known if overlooked mechanism of cancer metabolism that's almost universal to all cancer cells and nobody is really questioning as a valid mode of operation. The research was done by a bonified university medical research team and published in a respected peer reviewed journal. This isn't your typical snake oil remedy. You know that and I know that so why not have an honest moment and cut the bullshit about this being another megadose vitamin C or flavinoid cancer treatment.

The seller isn't making any huge profit margin given cost of materials, processing, and packaging. The cost of the drug for an entire course of treatment is less than the cost to fill up the gas tank in a Honda Accord so no one's going to be financially harmed. It's actually inexpensive enough so it can be used by poor people to save the family dog to say nothing of saving a person. Most of the people who will choose to try it at this stage are either 1) shit out of luck and sentenced to die anyhow; 2) would rather die than go through the living hell of surgery, chemo, and radiation just to have a 50% chance of living an extra 3 years; or 3) can't afford the six figure price tag for "approved" therapies.

If the people are editing the website to avoid legal entanglements who the hell can blame them given the litigous nature of our culture. If you actually practiced real medicine you might actually be sympathetic to that. My wife manages a real surgical practice for an eye surgeon. That doctor wouldn't know a blog if you hit him over the head with one and wouldn't waste his valuable time on one even if he did. How many surgeries a week do you perform you posturing poseur?

DaveScot wrote, "If and when someone has positive news about it I'm going to short the living shit out of a few companies that make expensive cancer drugs and radiation equipment."

So trying a pump-and-dump scheme in reverse? Mighty risky. Not only does the SEC frown on such actions but you run quite a risk of being caught short if your attempt at market manipulation doesn't drive down the stock price of the companies you shorted.

It's kind of a damned-if-you-do/damned-if-you-don't problem. If you make a huge profit for selling short after promoting an untested cancer cure, the SEC will be after your ass. If your efforts of promotion of an untested cancer cure don't drive the stock of those companies down, you are going to be caught with a short sale.

Further, at some point the FDA may step in to stop the peddling of an unproven cancer cure. The higher the publicity rises on something like this, the faster the FDA moves. I suspect your estimate on the time frame before the FDA steps in may be off a bit. After the first death from someone using DCA without buffering, or from an unexpected interaction with other cancer treatment drugs, the FDA will take notice. With the result that veterinarians will have trouble getting DCA.

But, since you are one of the smartest brains on this cinder, I'm sure you are well aware of all the legal, ethical, and moral problems with taking desperate people's money for an untested cancer treatment while fraudulently promoting it in order to damage the market value of companies which sell proven cancer treatments.

There's really no need for me to have written any of this.

Dave - I'll probably give this diatribe far more attention than it deserves, but here goes...

I'm not sure what the rest of you blathering is based on. DCA certainly looks promising in the lab and its safety has been well established in decades of clinical use.

But we have no idea what the safe dose is for cancer patients, or how it may interfere with other forms of treatment they may be using. That's the entire purpose behind a Phase 1 human trial - to determine what that safe dose is. If you're going to go down that road, it had better be in a highly controlled environment like a real clinical trial, not through spurious off-label prescribing.

It works against a well known if overlooked mechanism of cancer metabolism that's almost universal to all cancer cells and nobody is really questioning as a valid mode of operation. The research was done by a bonified university medical research team and published in a respected peer reviewed journal.

Again, the history of cancer research is littered with treatments that were effective in animals and ineffective in humans. That point has only been made, what, about 10,000 times in these posts?

This isn't your typical snake oil remedy. You know that and I know that so why not have an honest moment and cut the bullshit about this being another megadose vitamin C or flavinoid cancer treatment.

It's actually the same thing, Dave, until the day that somebody proves that IN HUMANS the treatment works. Vitamin C was promising in vitro too, if I remember.

The seller isn't making any huge profit margin given cost of materials, processing, and packaging. The cost of the drug for an entire course of treatment is less than the cost to fill up the gas tank in a Honda Accord so no one's going to be financially harmed.

Huge profit is relative. If a couple of fly-by-night hucksters can make $250,000 - it might be small potatoes compared to Merck but it's still a substantial amount of money.

And even if the relative cost of the drug is low, there are other significant personal costs if the drug is ineffective and interferes with palliative care treatments.

It's actually inexpensive enough so it can be used by poor people to save the family dog to say nothing of saving a person. Most of the people who will choose to try it at this stage are either 1) shit out of luck and sentenced to die anyhow; 2) would rather die than go through the living hell of surgery, chemo, and radiation just to have a 50% chance of living an extra 3 years; or 3) can't afford the six figure price tag for "approved" therapies.

If someone wants to spend their last few months engaging in a Phase 1 trial of DCA, that's their business. But they should understand that the drug hasn't been tested in humans, and it should be closely monitored to ensure it doesn't interfere with other medications they may be taking that offer palliative relief. What's being suggested by the BuyDCA.com type of websites is just buying the drug and trying it on your own, without even consulting your oncologist. THAT is what I think most people's big objections are, Dave.

I'm all for legitimate clinical trials of DCA. I'm not for just trying it out of desperation. You and I both know it's not going to be marketed as an experimental drug, but as a wonder cure that's being "hidden" from the masses. That's how this works, and I can't imagine you're so naive to think otherwise. Actually, I can, but that's another issue.

If the people are editing the website to avoid legal entanglements who the hell can blame them given the litigous nature of our culture. If you actually practiced real medicine you might actually be sympathetic to that. My wife manages a real surgical practice for an eye surgeon. That doctor wouldn't know a blog if you hit him over the head with one and wouldn't waste his valuable time on one even if he did. How many surgeries a week do you perform you posturing poseur?

I work in a medical environemnt as well. And yes, I am well aware of the concerns about malpractice that permeate the field. But the one thing you do NOT do as a doctor is to recommend treatments that are not within the standard of care for a particular condition, unless you're doing so within the context of a legitimate clinical trial. I don't know personally of any doctor who would recommend that, not just for malpractice reasons but for ethical ones as well.

By anonimouse (not verified) on 28 Feb 2007 #permalink

The research was done by a bonified university medical research team and published in a respected peer reviewed journal.

That sounds painful.

Dave,

I think the fallacy in your stance has been well-established:

1. There is no proven safe (much less effective) dose for cancer patients.

2. There is no reason to believe, at least right now, that this treatment will work any better than the countless others that have been successful in animals.

3. We have no idea how this will interact with palliative care already being received by the end-of-life patients that you suggest should try it.

Suggesting, or outright touting, the use of DCA outside of the scope of an approved clinical trial is dangerous behavior.

By anonimouse (not verified) on 28 Feb 2007 #permalink

Davescott writes:
"My enthusiasm at this point is entirely contained by the set of things that piss off Orac and his loyal minions."

You derive your joie de vive out of trolling on the internet. Is this a new low point for ID proponents..... or a new high point?

flex

"So trying a pump-and-dump scheme in reverse?"

No. I'm going to move upon hearing someone describe positive results with DCA. Nothing at all wrong with that.

"Mighty risky. Not only does the SEC frown on such actions"

Piffle.

"but you run quite a risk of being caught short if your attempt at market manipulation doesn't drive down the stock price of the companies you shorted."

That's why God gave us the Chicago Board Options Exchange.

"There's really no need for me to have written any of this."

You got something right!

"But we have no idea what the safe dose is for cancer patients, or how it may interfere with other forms of treatment they may be using. That's the entire purpose behind a Phase 1 human trial - to determine what that safe dose is. If you're going to go down that road, it had better be in a highly controlled environment like a real clinical trial, not through spurious off-label prescribing."

You have no right to prevent people from assessing that risk for themselves. Doctors are advisors not dictators. One gets an opinion, takes it under advisement, and makes one's own decision. Who do you think you are?

"Again, the history of cancer research is littered with treatments that were effective in animals and ineffective in humans. That point has only been made, what, about 10,000 times in these posts?"

The history of medicine is littered with breakthrough cures too. You don't know if this will or won't work in humans. Neither do I. That situation won't last much longer however, no thanks to you.

"If a couple of fly-by-night hucksters can make $250,000 - it might be small potatoes compared to Merck but it's still a substantial amount of money."

I can't imagine how that's possible. Why don't you flesh out that business opportunity a little bit using some actual numbers and show me how this buydca.com can make that much profit at the price they're charging. I sure can't see any way they can do it unless DCA really works and they somehow manage to compete for the long term with the big companies that will ramp up their Sodium DCA production. The latter bit is the big problem.

"What's being suggested by the BuyDCA.com type of websites is just buying the drug and trying it on your own, without even consulting your oncologist. THAT is what I think most people's big objections are, Dave."

I understand. Why do you think I called you a control freak? I'm libertarian by nature and do not believe the government should be in the business of protecting people from themselves. The human race somehow has managed to survive for millions of years without oncologists to consult. It'll survive this too.

"You and I both know it's not going to be marketed as an experimental drug, but as a wonder cure that's being "hidden" from the masses."

Feel free to substantiate that. The "big pharma is burying this" isn't getting a whole lot of traction that I can see and thedcasite isn't playing it up that way. I have a google emailing me all the DCA news that gets printed and it's about one article every two days. You're just guessing and as of this moment it appears you're guessing wrong.

"I don't know personally of any doctor who would recommend that, not just for malpractice reasons but for ethical ones as well."

I don't expect them to. But I also don't expect them to dictate. They're advisors. They give their opinions and they're hopefully honest opinions that are devoid of concerns about personal liability or personal profit. But we both know liability and profit are too often part of the equation.

khan

Sorry. Bona fide. Have you been with the spelling police long?

jesse

This has nothing to do with ID. If you don't have anything constructive or on topic to add why don't you do everyone a favor and STFU.

To reply to the post asking whether somebody got a screen shot of the early (Feb 20 or earlier) pages of theDCAsite and buyDCA: yes sir! What can you expect from quackers if not being dishonest? I was expecting them to pull the pages down or change them. Moreover, the website linking Nordstrom to Hulda Clark has been taken down as well - not before I got screen shots...

Dave Scot, you are a bit of a sad being if you think you are even "pissing" us "off" anymore. By now everybody on this blog knows what to expect from people like you.

By steppen wolf (not verified) on 01 Mar 2007 #permalink

Well ok, I'm giving a more useful comment this time. (hopefully)

Really funny thing about that disclaimer.

I think there is a miscommunication here... We are amaturs and we don't quite understand what the serious consequences could be of DCA exposure. You did explain it in very very difficult terms. But I think for example the people who are selling DCA don't understand it and feel you are opposing them for unknown reason. And this is the misunderstanding.. You seem very worried, but the public is convinced that DCA could be a relative safe cancer treatment, as it is depicted like that in the media.

You seem very worried, but the public is convinced that DCA could be a relative safe cancer treatment, as it is depicted like that in the media.

Since when is safety determined by popularity, rather than rigorous scientific tests? This isn't American Idol.

For example, someone here in the comments noted that radiation and chemo would be much worse then DCA, being scorched by radiation. And so they are thinking that DCA is much safer then radiation.

Steven,

It has nothing to do with one treatment being "worse" than the other.

It has to do with the fact that while radiation and chemotherapy have side effects and drawbacks, they are proven treatments for cancer. DCA is not.

It has to do with the fact that the medical indications for use of radiation and chemotherapy in cancer patients are well known. There are no such indications for DCA, as there haven't even been toxicity studies in cancer patients much less robust clinical trials.

It has to do with the fact that eschewing proven treatments for an unproven treatment like DCA is risky in and of itself, as it may result in people who could've been treated effectively by chemotherapy and radiation left with no options once the "DCA protocol" is proven to be ineffective.

By anonimouse (not verified) on 06 Mar 2007 #permalink

Dave,

Glad to see my pleas fell on deaf ears.

"But we have no idea what the safe dose is for cancer patients, or how it may interfere with other forms of treatment they may be using. That's the entire purpose behind a Phase 1 human trial - to determine what that safe dose is. If you're going to go down that road, it had better be in a highly controlled environment like a real clinical trial, not through spurious off-label prescribing."

You have no right to prevent people from assessing that risk for themselves. Doctors are advisors not dictators. One gets an opinion, takes it under advisement, and makes one's own decision. Who do you think you are?

People should have all the facts before making that decision. Those facts should include the reality that DCA hasn't been tested in humans for cancer, that we don't what the safe dose is, we don't know what other cancer drugs it may interact with and if you buy DCA from a non-traditional source you have no idea what you're getting into. Are you ok with people having THAT kind of information?

I'm sorry if you find it disturbing that I want to prevent people from making a potentially catastrophic mistake by using a completely unproven drug for the treatment of cancer instead of drugs that are actually known to provide some benefit. Too bad you'd rather let quacks make a quick buck instead.

"Again, the history of cancer research is littered with treatments that were effective in animals and ineffective in humans. That point has only been made, what, about 10,000 times in these posts?"

The history of medicine is littered with breakthrough cures too. You don't know if this will or won't work in humans. Neither do I. That situation won't last much longer however, no thanks to you.

Sorry that your money making scheme is going awry, Dave. At least that's what is sounds like.

You do say one cogent thing, though - that we don't know that this will work in humans or not.

That is exactly the point.

Why don't you work towards getting someone to put together a clinical Phase 1 trial of DCA to determine a safe dose? Then a Phase 2 trial to determine effectiveness? And if it works, then a larger trial to determine whether it's effective in a wider population.

The "time is running out" gambit is the last gasp of the altie.

"If a couple of fly-by-night hucksters can make $250,000 - it might be small potatoes compared to Merck but it's still a substantial amount of money."

I can't imagine how that's possible. Why don't you flesh out that business opportunity a little bit using some actual numbers and show me how this buydca.com can make that much profit at the price they're charging. I sure can't see any way they can do it unless DCA really works and they somehow manage to compete for the long term with the big companies that will ramp up their Sodium DCA production. The latter bit is the big problem.

Ok, so what is the expected profit margin? Since you seem to know so much about it. You're not honestly trying to tell me these guys are just in it for purely benevolent reasons?

"What's being suggested by the BuyDCA.com type of websites is just buying the drug and trying it on your own, without even consulting your oncologist. THAT is what I think most people's big objections are, Dave."

I understand. Why do you think I called you a control freak? I'm libertarian by nature and do not believe the government should be in the business of protecting people from themselves. The human race somehow has managed to survive for millions of years without oncologists to consult. It'll survive this too.

It all comes back to information, Dave. If I'm taking DCA and not telling my doctor, he or she has no idea whether I'm risking a potential drug interaction. Nor will he or she know whether any new symptoms that arise are due to one of the other drugs I'm taking or not.

"You and I both know it's not going to be marketed as an experimental drug, but as a wonder cure that's being "hidden" from the masses."

Feel free to substantiate that. The "big pharma is burying this" isn't getting a whole lot of traction that I can see and thedcasite isn't playing it up that way. I have a google emailing me all the DCA news that gets printed and it's about one article every two days. You're just guessing and as of this moment it appears you're guessing wrong.

Read the bulletin boards on the DCA web site.

"I don't know personally of any doctor who would recommend that, not just for malpractice reasons but for ethical ones as well."

I don't expect them to. But I also don't expect them to dictate. They're advisors. They give their opinions and they're hopefully honest opinions that are devoid of concerns about personal liability or personal profit. But we both know liability and profit are too often part of the equation.

This is about standard of care, genius. DCA is not within the accepted standard of care. It's not even being experimented with in humans in any reasonable manner. Why in the world would you expect a reasonable oncologist to recommend it?

Whining about profit margins is just a red herring. Unless it's your profit margins on the sale of DCA, of course.

By anonimouse (not verified) on 06 Mar 2007 #permalink