Respectful Insolence

Checking in with The DCA Site

It’s been a week since I last wrote about dichloroacetate (DCA), the chemotherapeutic agent that targets tumor cells by an interesting new mechanism based on the Warburg effect, as I’ve described in the past. After a very interesting article in Cancer Cell in January by investigators at the University of Alberta, the blogosphere erupted with wild speculation that this was a “cure” for cancer, based only on animal studies that were fairly impressive. Because DCA is a small molecule that is supposedly “unpatentable,” pharmaceutical companies have been rather cool in their interest, and it is this reaction that has led to conspiracy-mongering that the “cure” is being “suppressed” by big pharma, plus a disturbing cottage industry of underground DCA suppliers selling DCA to desperate cancer patients, spearheaded by one Jim Tassano, who started The DCA Site. When last I left The DCA Site, I was administering a lesson in Cancer Biology 101 to one DaveScot over his rookie mistake of claiming that, just because the rate of growth of one patient’s tumors had slowed down that must mean that DCA was “working” at slowing down the growth of tumors.

I thought I’d check back again to see if any new developments had occurred. Sadly, there is this update from squareb, the patient that I discussed before:

My experience with DCA increased side effects really started about day 25 when I had increasing malaise and the start of tremors in my hands. Numbness in my hands started on day 27, the day after I stopped my dose of 25mg/kg twice daily. This is neuropathy from DCA, despite my use of 5mg/kg thiamine daily since the start of DCA. The general feeling of malaise culminated on day 29. On that day I was feeling more lousy than usual. Then when sitting on my couch I felt an impending sense of doom. I measured my blood pressure, it was slightly elevated (I don’t have high blood pressure), my pulse was regular but slightly elevated above normal at 84 bpm (usually it is about 60), my heart sounded strong through my stethoscope. Cardiac-wise I was doing okay. Suddenly I felt as if my whole body was withdrawing inwards even though I was sitting motionless on the couch. I thought I was telling my last words to my wife. I have a glucometer (that I took home from the office to monitor possible hypoglycemia from DCA) , but I think I no longer was coherent enough to use it. I drank some juice and ate some salad. The feeling started resolving within fifteen minutes. I had not eaten for four hours before. I am convinced this was hypoglycemia.

I have read about hypoglycemic attacks in medical school and have seen them many times in my practice, but I have never experienced them myself. Just like it is hard to describe the color blue to blind man, it is hard to imagine many symptoms that you have never experienced yourself.

I am feeling better today. My tremors and numbness is less and general malaise has resolved. I am convinced these symptoms are all due to DCA since I am on no other medications, including over-the-counter ones.

DCA is chemotherapy. It is serious medicine. It has potentially serious side effects. Please use it with your doctor’s awareness and preferably his/her consent, and make sure you are closely monitored by a doctor. Don’t do it on your own!

Although I disagree with squareb’s self-medicating with DCA and have pointed out what a horrible idea such self-experimentation is, he is far more level-headed and reasonabel than many of the other denizens of the newsgroup. He grasps just how serious his situation is and he understands that DCA is indeed chemotherapy. I feel bad for his plight, and just yesterday he showed up in the comments of another post by me to state emphatically that DCA is not working for him. And squareb is not the only one feeling side effects:

I began using DCA for Stage IV breast cancer, mets to bone, lung and lier, 19 days ago. We tried several MDs but no one would prescribe or be responsible for monitoring so we’re on our own. I’m taking 25 mg/kg. At the same time, I began a course of essential oils and am trying to sort out what may be reactions from oils and what might be from DCA. Has anyone had stomach upset or just general tiredness/malaise? How common are tremors? Does anyone feel more pain at tumor sites? My whole hope in this pursuit of DCA is not to feel as though I’m on chemo and the longer I take it, the more generally tired and yucky I feel.

Worse, I found this:

I’ve been using DCA for stage 3 BC for 2+ weeks now. Want to join our on-line clinical study? We have 4 doctors involved. You will remain anonymous. Susan1 is coordinator. I was the first patient involved. Please email me if you’re interested.

Two points: Any such “online clinical study” would be worthless as far as producing useful results, and any physician involved in such a study would be acting highly unethically. No institutional review board would ever approve such a study, given how unlikely this would be to benefit any patient and the lack of any sort of true informed consent. Second, sadly and not suprisingly, thus far there are no reports of any objective tumor responses. I’m not going to belabor the point much more, but DCA is chemotherapy. Would people be so willing to experiment so wildly and without supervision if they truly understood that?

ADDENDUM: Since I wrote this last night, this article has been pointed out to me. It’s a long article about DCA, The DCA Site, and “squareb” (pseudonym used in the article: Lawrence Burgh). One good bit of news is that the FDA is investigating Jim Tassano, purveyor of “Vet-DCA,” which he disingenuously claims is primarily intended for pets:

Tassano maintains that the primary goal of the pet site is to sell DCA for animal use, although he is aware that people are buying it for themselves. On 5 March, he posted updates on the health of two people he claims to have sold DCA to, saying both were doing well. This post has since been removed. “I can understand why they do it,” he told New Scientist. “The information is there so they can go to their doctor with it. Whether they buy their DCA from me is their choice.”

Because DCA has not been approved for human use, it would be illegal for a website to sell it for human consumption in the US, says special agent Phil Walsky of the Food and Drug Administration’s Office of Criminal Investigations. His office is investigating the links between the two sites. Marketing DCA for animal use is also an offence, as it has never been approved for veterinary use, an FDA spokeswoman says.

Tassano says he is now aware of the FDA’s rules, and has amended his postings over the past few weeks to reflect this. For example, earlier postings which stated that he had managed to acquire large quantities of DCA have since been removed, and on 23 February a disclaimer appeared stating “We do not advocate the use of DCA for human cancer at this stage and time.”

And it’s having an effect:

Michelakis says that since he published his study, and the appearance of the websites, he has received more than 15,000 emails from people enquiring about DCA. Around 3000 of them ask about it as a veterinary drug, with the implication that they are trying to source it for themselves or another person. He sees a clear link between the pet site and the questions he is being asked. “At first [people enquiring] were quite honest,” he says. “But we’re now getting emails from people asking for dosage information for, say, a 150-pound golden retriever.”

Ron Marcinkoski, a pharmacist in Edmonton, Alberta, has also been contacted by people who he believes have bought DCA from the pet site. “People are asking me if I can test its purity, if I can encapsulate it,” he says. “I think it is a major source.”

Even if Tassano’s intentions are good, as he claims, you know what they say about the road to hell.

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
    March 28, 2007

    I cannot avoid the great sadness and sympathy I feel for all desparate cancer patients, on one hand, and the great anger and disgust toward people such as Jim Tassano, whose main purpose is to squeeze money out of these patients, on the other.

    The DCA saga is a testimony to the power of the internt and how charlatans are using this power for their own selfish reasons.

  2. #2 steppen wolf
    March 28, 2007

    Apparently, contrary to what Dave Scot has been writing in the past, the FDA has indeed started paying attention to Jim Tassano and the DCA parable, after the story appeared in Canadian mainstream media, and the Canadian Cancer Society publicly discouraged cancer patients from using DCA at this point in time:
    http://www.canada.com/nationalpost/news/story.html?id=1f96b9de-7fa3-4bbb-822a-b8c148a1808d&k=68890

    People on the DCA site have encouraged readers to “buy as much DCA as possible” before the FDA shuts down buyDCA.com (postings now removed? I cannot access them anymore through the Google link).

    I wish my best to all terminal cancer patients – and hope they will try spending their last months having the best quality time with their family and friends, instead of trying dangerous therapies that have a very real potential to worsen their quality of life.

  3. #3 rose
    March 28, 2007

    Hey, found your site via Herbinator, who likes to leave condescending sarcastic remarks on my blog whenever he disagrees and calls me a medico. I loved your post on “alties”. It made me laugh. I will add your “alties” post to my quacks post.

  4. #4 Willis
    March 28, 2007

    Nature also has an article today. Since you have worn out the ethical issues involved, I for one would like to see more discussion of the science. Specifically, I would love to hear your thoughts on the German papers I posted earlier reporting their findings regarding the involvement of voltage-gated potassium channels in carcinogenesis (including the Kv1.5 channels discussed by Michelakis, et al.).

    http://www.nature.com/news/2007/070326/full/446474a.html

  5. #5 G Barnett
    March 28, 2007

    Ars Technica also has a short thing on it today:

    http://arstechnica.com/journals/science.ars/2007/03/28/ethical-issues-over-potential-cancer-treatment

    It seems to be in need of some comments correcting some of the errors, like the “non-patentability” of DCA (didn’t Abel deal with that?) plus a whole bunch of linkage in this direction, I’d hazard.

  6. #6 Justin Moretti
    March 28, 2007

    One is unsure whether to can the DCA quacks over their failure to get so many important points, or give them a modicum of praise because, for a change, they are pushing a treatment which,unlike homeopathy for example, does have a scientific basis however minimal and flawed.

    It’s a shame, really, because they actually had a decent hypothesis to start with – then they went and ruined it by completely fudging the method. But then, that fudging of the method highlights what is wrong with ‘alternative medicine’ in the first place: the inability to think critically; perform objective, systematic analysis; and (perhaps most important) to be able to ditch one’s hypothesis when the evidence is against it.

  7. #7 pelican
    March 28, 2007

    Really, really, really bad … I’m listening to the BBC, and they’re advocating the use of DCA for cancer- and citing the “clinical trial” website. Ouch. I’m usually pretty pro-BBC, but this is not at all useful.

  8. #8 Marilyn
    March 29, 2007

    I seems Dr M was not the first one to come up with this idea re DCA, check out this out from a a few years ago, (2001) http://www.patentstorm.us/patents/6331559-description.html
    written by Paul M Bingham and Zuzana Zachar from the Reasearch Foundation of State University of New York.

    Marilyn

  9. #9 Martin R
    March 31, 2007

    The DCA story is in the main Swedish newspaper Dagens Nyheter today under the headline “Cancer-sufferers believe in bogus drug”.

  10. #10 DaveScot
    April 10, 2007

    Better go check thedcasite again, Orac.

    How much time do I have left on the “we’ll know in 60 days whether it works or not”? Must still be more than 30 days left.

    Here are some worth looking at:

    http://www.thedcasite.com/cgi/dcboard.cgi?az=read_count&om=38&forum=DCForumID2&viewmode=threaded

    A guy with bladder cancer in cachexia had dropped from 158 to 133 pounds and was unable to walk. Sent home to die. After 2 weeks on DCA (1 gram, once per day) started gaining weight and put on 11 pounds after 2 more weeks. He’s now exercising and has experienced no side effects. Bladder spasms have subsided.

    http://www.thedcasite.com/dcaforum/DCForumID2/39.html

    Woman with tumor on spine could not walk and was advised she’d probably never walk again. 5 days on 500mg DCA and she’s walking again.

    http://www.thedcasite.com/dcaforum/DCForumID2/36.html

    This one discusses potentially critical need to keep bodily fluids in alkaline range for DCA to work. I added a source for a pH meter with the requisite resolution (0.02) that’s $60 (used in wine/beer making) that I happen to own. It’s by far the most inexpensive pH meter I was able to find last year when I went looking for one.

    http://www.thedcasite.com/dcaforum/DCForumID2/37.html

    Another talking about pH.

    http://www.buydca.com/dcaforum/DCForumID3/2.html

    One cat with cancer rapidly using up its ninth life reported recovering nicely after DCA treatment.

    So how are those official FDA approved clinical trials coming along – has one even started yet or was the story right about big pharma ignoring it because they can’t make any money from it? What’s up with that pharma shillmeister heir Doctor Orac?

  11. #11 mark
    April 10, 2007

    I see you’ve attracted anti-evolution, anti-GW, altie/quack crank extraordinaire Dave Scot. Nice job Orac. He’s been pushing this DCA conspiracy over at UC which I guess indicates they’re trying to expand their crankdom into new frontiers.