Respectful Insolence

I’ve probably beat this one into the ground over the last couple of days; so this will be uncharacteristically brief, because it’s time to move on. Also, it was fun to see DaveScot go into paroxysms to try to justify the dangerous, unethical, and reckless actions of Heather Nordstrom and her stepfather in setting up The DCA Site and its sister site, BuyDCA.com, where Heather et al are selling “Pet-DCA” in a ludicrously obvious (and probably ineffective) ploy to be able to claim to the FDA, “Hey, we’re not selling this for human consumption.” One wonders, perhaps, if DaveScot may actually have a conscience and whether learning what he’s unleashed by publicizing DCA as a “cheap cancer cure” that “big pharma” and the FDA are trying to keep from you has started to make him think twice. (It was through Uncommon Descent that the “entrepreneurs” responsible for these two websites learned about DCA in the first place.)

If there are any doubts remaining that DCA has entered the realm of Laetrile-like quackery on the Internet, come with me one more time as I delve into the Twilight Zone that is the forums on The DCA Site and doubt no more:

It is disappointing that DCA is not available. Therefore, my company has decideded to provide products with DCA. There will be 3 products, a black salve with DCA, an internal product with MSM and DMSO formula and a bloodroot tincture with DCA. Our site is www.bloodrootproducts.com. We will keep you posted. The products will be available by March 1, 2007.

And, disturbingly, comes this sad, desperate response:

I read your site, and this is amazing news about the new Black Salve product for skin and internal use containing DCA. Once it is truly available I would love to purchase some, as any kind of hope for a cure is all we need!

Truly, you can’t make stuff like this up. DCA “salve”? There’s no evidence whatsoever that topical DCA would do anything at all. Dichloroacetic acid can indeed be absorbed through the skin, but would have the unfortunate drawback of causing nasty burns. Even if buffered sodium dichloroacetate could be absorbed through the skin, it would be unlikely to produce blood levels adequate to be therapeutic, either for congenital lactic acidosis or for cancer. Unfortunately, this bogus pitch and the hype that the unscrupulous are generating to sell DCA are having an effect among patients with cancer. One can only think that, if more people had better critical thinking skills, then there wouldn’t be so many people susceptible to this blatant hucksterism. For example, some people still believe that DCA is “not a drug” or “not chemotherapy:

I just learned that DCA is a compound and not a drug per se, and that regular health food stores and pharmacies do not carry it. It seems there must be a large “compounding” pharmacy in every major metro area.

I repeat yet again: DCA is a drug, and it is chemotherapy! What on earth do people think it is? In fact, contrary to the comments of some who seem to view DCA as a “natural” alternative to drugs and chemotherapy, DCA is in fact a chemical compound whose pharmacologic activity against congenital lactic acidosis and now cancer was discovered through scientific experimentation. It’s synthesized in chemical plants, not isolated from plants or other natural products. It produces side effects and adverse reactions, just like any other drug, reactions that are likely to be worse at higher doses.

And, yet again, if you want to know the price of the hype and “not a drug not chemotherapy” wishful thinking like what is being pushed by these websites, here it is:

My husband has been using DCA since early February. He has Glioblastoma, an aggressive brain cancer that DCA is proposed to target. The naDCA he is using was made in a private lab. We turned away from our medical community, realizing that we would not receive blessings from them, since they considered him a “dead man walking”. From what I have read here, my husband seems to be the earliest “labrat”. We obtained the DCA in early February, started at a 5% dose,(to test toxicity or side effects, I suppose) and after 4 days , he insisted on taking 25mg per kg. He takes a liquid dose twice a day( totaling 25mg per kg). He has been taking DCA since Feb 7, 2006, with full dose as of Feb 11. No side effects to report as yet. Though side effects of DCA(numbness in fingers and appendages) are also symptoms of his disease, there are none to report at this time. He is also taking 100mg per day of thiamine. He is also on CCNU, Heparin, and 16 mg steroid. So far, so good. I am taking weekly urine samples to check his billyrubin, ph , etc. He still sees an oncologist, and takes chemo( CCNU). His doctors do not know that he is taking DCA. I do not trust them, they have not been terribly compassionate through this, and I do not feel that they would be as knowledgable as those of us that are in these desparate situations. I pray for all of us that I can report great news in the weeks to come. I still can’t decide at this point if he should take THiamine or not? Any thoughts?

Here we have a cancer patient taking DCA without telling his oncologist and at the same time as taking a powerful alkylating agent (CCNU) a drug for which there is no information regarding drug interactions with DCA. If this patient starts having problems, is he going to tell his oncologist? I’d hate to be his oncologist. I understand, as much as is possible without having lived it personally myself, the desperation of this patient, but it is misguided in the extreme to think that doctors would not be more knowledgeable about the patient about DCA. At the very least, the physician will be able to investigate what to look for and have a better chance of recognizing dangerous drug reactions or interactions than the average patient.

Of course, if the physician is unaware that the patient is taking something like DCA, then there’s virtually no chance of recognizing adverse reactions or of dealing with them properly.

Enough’s enough.

I think you’ll agree with me (and a reader who e-mailed me asking me why I haven’t done this already), it’s time to report these clowns to the appropriate authorities. The more who complain, the merrier.

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)

Comments

  1. #1 S. Rivlin
    February 22, 2007

    Losing a younger brother to lymphoma last October, I can feel for the couple who would try anything to fight their cancer. However, to experiment with a drug that was tested only on a cancerous cell line and on human cancerous cells grafted on a rat, and to hope for a miracle, is such a desparate act that those who sell the stuff to this couple and those who promote it as an anti-cancerous drug, namely, Dave Springer, must be punished to the full extent of the law.

  2. #2 Rev. BigDumbChimp
    February 22, 2007

    I do not trust them, they have not been terribly compassionate through this, and I do not feel that they would be as knowledgable as those of us that are in these desparate situations.

    That right there sums it up. People who are in desparate[sic] situations are so emotionally attached that it can affect their ability to make sound decisions. While it is possible that they know more than a MD on these topics, I seriously doubt that is the case in the vast majority of instances. The need to find the miracle cure is so tempting to those in these sad positions that they find it hard to trust the experts because a lot of the times they don’t like what they hear. It takes time with researched and proven techniques to address cancer, but woo sure sounds easier and faster. Combine that with the emotionally charged publicity people like DaveScot and the websites you’ve mentioned add it’s a very tempting choice. Sad.

  3. #3 S. Rivlin
    February 22, 2007

    I have just reported on the activities of the two websites to the FDA, using the information provided by Orac. I urge everyone who have read Orac’s post today to do the same.

  4. #4 Lord Runolfr
    February 22, 2007

    I can see the headlines in altie magazines now. “Pharma-shills lobby FDA to shut down DCA providers.”

  5. #5 Joe
    February 22, 2007

    Concerning the “black salve” with bloodroot, see:
    http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/eschar.html

    WARNING: there is a disturbing picture of a victim. The stuff rots one’s skin, the picture shows someone whose nose cartillage has been exposed by the stuff.

  6. #6 anonimouse
    February 22, 2007

    I’ve made a lot of snarky comments regarding this whole DCA fiasco, but I do send out a heartfelt plea to those involved – either those selling or buying.

    Don’t do it.

    I’m not saying this because I’m a pharma-shill or a doctor scared that cancer will be cured. I’m saying this as a human being seriously worried that people are going to get hurt.

    Cancer patients, even if they’re terminal, can still have the quality of their life improved by palliative care. We have no idea if DCA would interfere with such care. Foregoing palliative care to try DCA without any human trials to know what the right dose is for a cancer patient will most likely do nothing but hasten one’s demise and perhaps make it more unpleasant than it needs to be. If you’re thinking about trying this to “cure” your cancer, please don’t do it. Not today. And certainly not from some mail-order service.

    And to those who are promoting the use of or outright selling DCA under the guise of “health freedom”, I’m begging you to stop. Maybe you think your cause is noble, and you truly believe you’re doing this to help desperate cancer patients. I may or may not believe that. But I do believe that you have a sense of compassion, decency, and a conscience. Understand that what you are doing has a low likelihood of working, and a high likelihood of causing more problems. You’re not going to help anyone, and the only thing you’re likely to do is get in trouble with the FDA and be shut down anyway.

    I have no problems with you fighting the good fight to get the problem clinical trials underway to test DCA in cancer patients, and to move the process along as quickly as possible. I do have a problem with trying to circumvent not just the scientific vetting of a new cancer treatment, but the laws that protect people from unproven treatments.

  7. #7 S. Rivlin
    February 22, 2007

    anonimouse,

    I understand the motives for your plea, though I honestly believe that those who are in the business of selling industrial grade DCA to desparate cancer patients are in it for the money only. They are laughing all the way to the bank. I hope you have followed my plea to report them to the FDA.

  8. #8 Justin Moretti
    February 22, 2007

    The level of paranoia shown by the pro-DCA crowd scares and sickens me. The lack of trust they show in the medical profession disturbs me. The lack of scientific understanding underlying their advocacy of this stuff makes me want to brain myself upon my desk, unless it is evidence of outright criminality and deception, in which it makes me want to brain THEM upon their own desks.

    Get this straight, people – anything you put into your body to have a therapeutic effect is a drug. That is the definition of the term. Anyone who tells you otherwise is lying to you, and is quite possibly fooling themselves as well.

  9. #9 The Loony Bassoony
    February 22, 2007

    His doctors do not know that he is taking DCA. I do not trust them

    Yet she allows her husband to continue seeing them, accepting treatment from them while deliberately concealing information from them (i.e. directly lying when asked “are you taking any other medications”). Amazing. I’d find the logical inconsistency absurd, if I didn’t know people like this. They continue seeing the doctors (and even going through treatment) to “keep up appearances”, as if they don’t want to offend the same doctors they despise so. Their problems run a bit deeper than just a lack of critical thinking skills.

  10. #10 boojieboy
    February 23, 2007

    ORAC:

    You may have unintentionally given the DCA shills some tools with which to promote this stuff. Look for the following statements to be misquoted:

    this drug might be legit. The preclinical data in cell culture and rats are promising. It might have decent anticancer activity in humans.

    Not that they’d usually try to use you as an authority, but you can bet that if someone dies from DCA-toxicity, and the wrongful death suits start appearing, they’re going to attempt to deflect blame by pointing to statements like that one.

  11. #11 Orac
    February 23, 2007

    Not that they’d usually try to use you as an authority, but you can bet that if someone dies from DCA-toxicity, and the wrongful death suits start appearing, they’re going to attempt to deflect blame by pointing to statements like that one.

    They can try, but all that has to be done is to show the context of those words, plus the numerous other posts warning that it’s too early to conclude that DCA is useful against cancer in humans, and their argument is pretty much shot down.

  12. #12 NAP
    March 15, 2007

    I too have ordered DCA and have given it to myself. I ordered it from a chemical company at a much lower price. with nothing else to lose, I took 20 mg/kg/day for three weeks with no problems. I did not tell my oncologist, and besides, I am a doctor too, so I can monitor better. I hope the DCA works for the man with the glioma. Thiamine is recommended because DCA depletes thiamine and cause liver damage. The thiamine should prevent this.

    Anyone who disagrees with this, I say look at the research, realize that it is going to be in clinical trials anyway, and realize that in a patient with cancer, it is worth a try.

  13. #13 Orac
    March 15, 2007

    One question: How do you know that what you have is really DCA?

    In any case, I have looked at the research. Read the very first link listed at the end of the post, where I discuss the Michelakis paper in detail. Then look at the last link, where I describe how brain metastases from breast cancer do not exhibit the Warburg effect and thus would likely not be sensitive to DCA. Sadly, it is more likely than not that it will not work in humans, or, if it does work, its effects will be much more modest than what was observed in the rats. More importantly, even if it is effective, we have no idea what the effective dose against cancer is in humans. My guess, if other chemotherapeutic drugs are any indication (and, make no mistake about it, DCA is a chemotherapeutic drug), is that the effective dose against cancer in humans will be much higher than the dose to treat MELAS, meaning that toxicity will likely be a concern. In any case, without clinical trials, we won’t know. If you’re taking too little, you’re in essence wasting your money and exposing yourself to risk (even if small) for no potential benefit. If you take more, you start to risk toxicity, such as the neuropathy described–and you still won’t know if that’s worth it, because it’s unknown whether DCA is effective against cancer in humans.

    I’m all for the clinical trials, but it’s way premature to say that this stuff will be useful in humans. As I’ve pointed out, the vast majority of drugs found to have anticancer activity in rats or mice either fail to have activity in humans or have only modest activity. It’s highly unlikely that DCA is any “cure.”

  14. #14 john c.
    March 17, 2007

    We need clinical trials to start on DCA as soon as possible and, according to the University of Alberta website, the trials will start this spring. DCA will be found to be an effective chemical against cancer-it is just a matter of establishing what dose (mg/kg body weight) will be needed. Hopefully, the maximum safe and effective dose will be established in trials so that all cancer patients can start being healed.

    As far as the dcasite posters are concerned (along with their detractors on this site), I say that these early pioneers are all Stage IV/terminal cancer patients so the potential benefits of self-administered dca FAR, FAR outweigh the potential (toxic) hazards. Dr. Stackpoole, in his research on dca in the 60′s and 70′s (to treat lactic acidosis patients) has eminently proven that sodiumdca is a safe, somewhat effective drug, when administered within certain dosages.

    What is worst that will happen with these self-administering terminal cancer patients? They may get a little neuropathy from the dca, and that is reversible when they stop taking dca. The best that can happen, is that dca can kill all their cancer/tumors.

    Remember, we all are swallowing dca every day ourselves. It is a by-product of chlorinated water. Albeit, we are taking in dca in microgram quantities, but it is not the verboten poison that some on this site claim. Just because the greedy pharmaceuticals aren’t running trials on dca (while all the lemming-like oncologists wait in lock step until the results of the ten year studies and results come out), doesn’t mean that dca is not the cure for cancer that we all have been waiting for. I think it is the cure, but only time will tell us-and the pioneers who are self-experimenting with it now will be remembered in history as those who put their (short) futures on the line for the rest of us to benefit from their discoveries.

  15. #15 Orac
    March 17, 2007

    The best that can happen, is that dca can kill all their cancer/tumors.

    This is an incredibly unlikely outcome. I would love it it it were true, but try reading this and this to see why it probably is not.

    My prediction: DCA will be somewhat effective against some cancer, with a response rate in the range of 20-25%, just like many other single agent chemotherapeutics. It will not be any sort of “miracle cure.” Second, as Dr. Michelakis pointed out, many other chemotherapeutic drugs cause neuropathy. If DCA is taken while taking one or more of those drugs, it might not be just a “little” peripheral neuropathy. What if DCA is synergistic in causing this complication? It might be enough to render a patient unable to walk and do activities of daily life. Just a thought.

    Just remember, when the results of the DCA clinical trials are OK but nothing earthshattering, you read it here first. If DCA is truly the “miracle cure” that these desperate people are clutching for, it will become apparent very, very fast.