Respectful Insolence

It’s been a couple of weeks since we last checked in with The DCA Site, that dubious advertising site for BuyDCA.com, where a chemist named Jim Tassano sells to desperate cancer patients non-pharmaceutical grade and non-FDA-approved dichloroacetate, the small molecule chemotherapeutic agent with an interesting and unusual mechanism of action that has shown promise in rat models of cancer but as yet has not undergone clinical trials in humans to determine if it is effective in cancer. Based on a lot of hype by the credulous and proudly ignorant, a lot of distrust of big pharma (some justified), and a lot of magical thinking, Internet entrepreneurs saw an opportunity to sell home-made DCA to desperate cancer patients who wanted to self-experiment. When last I checked in, I discussed the sad case of a man with metastatic sarcoma whose case was incorrectly being represented as a “success” of DCA against cancer when it was anything but, as the man himself even stated himself. I hadn’t been planning on revisiting this topic again unless I heard something new.

Then the clueless and odious David Springer (a.k.a. DaveScot), who bears more than a little responsibility for inspiring Jim Tassano to begin his misguided and unethical sales and has even bragged about his role in this fiasco, decided to show up yesterday with alleged DCA “success stories.” He mentioned two cases, and then a whole lot of “chaff,” as Dr. Egnor would put it that has nothing to do with whether DCA is an effective cancer treatment or not and is completely evidence-free speculation, particularly the astoundingly woo about “adjusting pH.” (See this post for just how bad such woo is; this prostate cancer patient can take all the supplements and “pH adjusters” he likes, but he is unlikely to change the pH of his blood more than infinitesimally. The body’s homeostatic mechanisms are just that tightly regulated.) Since DaveScot seemed to want a response from me and I was in an obliging mood last night, I thought I’d give him what he so clearly craves, namely yet another dose of Respectful Insolence™ (although in his case, the “respectful” part is meant purely ironically), particularly given that I had been sort of wondering what was going on at The DCA Site since I last checked in.

So let’s have a look at these cases that DaveScot refers to as “miraculous,” shall we? Remember how, long ago, I discussed why testimonials are not reliable “evidence” for the efficacy of a treatment? I’ll deal with the second of these cases first, because it’s the more straightforward:

Since we take turns visiting to assist and break up the mundane state of being homebound I heard Saturday Mom showed many signs of improvement by appearing to be stronger and steadier including staying awake and up. Not normal for her, since she frequently is in bed and out . On Easter Sunday My Mom stood with straight legs and took two steps. This is amazing since considering she just found out she has a fair size tumour on her spine and was told she probably would not walk again.
Here is the amazing part..she has only been on DCA since the fourth.

She did undergo five sessions of radiation and of course this means she is on steroids at this time and currently weaning down. After her last dose of radiation she was ok but started to go down and become sluggish with stomach issues. We are not sure if the steriods is interacting with the DCA and causing a sped up action?? Not being a doctor this is an assumption not based on knowledge. But we do know what we were told by the doctors and the specialists in the cancer center…Mom would not walk…and even though these are two steps…the fact she is regaining strength in her legs is a miracle.

This morning she sees her family doctor. She is under his care and he knows she is taking DCA. We are awaiting tests results for bone scan and she will have another scan on Thursday of this week to determine if she has a brain tumour. We remain positive and hopeful.

Mom has reported no significant changes or side effects since starting DCA. She is currently taking DCA 500 mg per day, multivitamin complex, B1 and vitamin C. She will start her detox and liver kit today after the doctor sets up her regime for taking them. Her dose of DCA will also be changed today under doctor’s assestment. Is this the DCA or a miracle? You be the judge but I know personally what I saw in my Mom’s condition prior to starting DcA is not what we are seeing today.

This is exactly what I discussed over two years ago, except with alternative therapies rather than a “conventional” chemotherapeutic like DCA. Indeed, even physicians are not immune to this sort of thinking, but let’s step back a minute. It is not said in the thread what kind of cancer this woman had, but it sounds as though she’s had cancer for over two years and recently discovered that she has a metastasis in her spine that led her deterioration and inability to walk. At least, that’s as much as I can tell. If I may make an educated guess, this story sounds to me as though the woman has breast cancer that’s reached an advanced stage. (Spinal compression from metastases to the spine is an all-too-common complication of metastatic breast cancer.) She has also had five doses of radiation therapy and is now taking steroids, which are standard therapies for spinal cord compression, right down to the five doses of radiation. (For spinal cord compression, radiation oncologists give a smaller number of larger X-ray fractions to shrink the tumors more rapidly.) Also, steroids can have powerful effects on mood and appetite, even in advanced cancer patients. The most likely explanation for her mother’s improvement is that the spinal radiation and steroids worked, which is great. It’s particularly fantastic that she appears to be doing better than expected, but when spine metastases respond to radiation the results can be quite dramatic in the short run. Not surprisingly, however, everyone on the discussion boards appears to be attributing her improvement to DCA. Indeed, our pH-adjusting prostate cancer patient is also likely to do the same thing, given that he’s undergoing radiation and chemotherapy as well. It’s certainly possible that DCA contributed to her improvement, but it’s even more likely that the radiation and steroids did. In either case, her improvement is not good evidence that DCA “worked” in her case. Spinal cord compression is a particularly horrible complication of some cancers, and it makes me happy to see a patient get decent palliation for it.

Sadly, though, from what I can tell, it’s basically wishful thinking to suspect that DCA is the primary cause for this patient’s good palliation. But what about the first patient? His case is a bit more muddy. It’s possible that DCA did something to his tumor, but the information is too sketchy, with no objective evidence to guide me in evaluating it:

My father Terry who is 62, was diagnosed in September of 2006 with a very rare form of bladder cancer called adenocarcinoma which is only found in 1 to 2 percent of bladder cancer patients. This form of cancer is highly aggressive and as a result was given approximately 6 months to 1 year to live. After the initial diagnosis, he underwent 2 surgeries. The first to remove the tumor from inside the bladder and second to remove the bladder entirely. The doctors were unsuccessful with removing the bladder due to the extent of the cancer growth. The tumor was actually on top of the bladder as well as attached to the peritoneum making it impossible to remove. The doctors also stated that pathology results had confirmed that the cancer was microscopically everywhere. To make matters worse, my father had received a heart transplant in July of 2002 due to heart disease. Because of his heart transplant he must take anti-rejection medications to keep his immune system suppressed. The immune system must be close to nonexistent to prevent his heart from rejecting. This has prevented him from having any form of cancer treatment. The doctors explained how there was nothing that could be done and basically sent him home to die. Since his diagnosis I have been researching for a cure with minimal side effects because of the extensive list of medications that my father is currently taking, which is about 25 pills a day. I had been emailing a doctor on-line with concerns of my fathers eating habits, he had dropped weight from 158lbs. to 133lbs. and was experiencing nausea, vomiting, dizziness. The doctor stated that my father was suffering from cachexia, which is common in final stages of cancer. It where the body actually eats itself and that I should purchase a product called Haelan 951. I later found that Haelan products were more than I could afford so I looked at the contents and purchased them individually from a vitamin supplier. At that same time I found and purchased DCA and began treatment for my father. Today has been four weeks of treatment, my father uses 1/4 teaspoon of DCA mixed with 8 ounces of water once a day in the morning along with vitamins Co Q-10, Soybean, L-glutamine, Omega 369, Pro-biotic Acidophilus, Noni, B1, and Zinc. Within 2 weeks of treatment he had noticeable improvements in appetite and was experiencing less nausea. Currently, he has not experienced any vomiting, nausea, or dizziness. He now weighs 144lbs. which is an 11 lbs weight gain in about 2 weeks, his appetite has greatly improved, he is now walking on his own which he was unable to do prior to treatment and amazingly is exercising. He has also regained muscles in his arms along with the color to his skin. He experiences bladder spasms thats directly related to the tumor on the bladder that has also subsided. There is no doubt in my mind or my families that DCA is the direct result of his improvements, simply because my father has not received any other form of treatment. I would also like to add that he has not experienced any side effects. My mother also informed me that my father went 3 and 1/2 hours without his pain medication yesterday and did not complain. Unfortunately we have not had any CT scans or monitoring from his doctors due to their lack of support but we can clearly see that something positive is happening. If anyone has any questions please feel free to ask, I will do anything I can to help.

This case seems somewhat more suggestive, but it’s less than convincing and ultimately underwhelming as evidence for several reasons. ( alsoI can’t help but also note that it has one element very similar to altie testimonials: the statement that the patient had been “sent home to die.”) In any case, the reason that this testimonial, although somewhat intriguing to me, ultimately fails to convince thus far is the same: In an individual patient, the clinical course of cancer can wax and wane remarkably. Moreover, the entire clinical picture is muddied by several factors, including the patient’s status as a transplant patient. First, the patient had two operations; it isn’t described when the most recent one was, but the attempt to resect the tumor sounds like a big operation. It’s unclear to me whether her father’s lack of appetite wasn’t related to that. For example, if he had a low grade partial small bowel obstruction from adhesions (scar tissue) that spontaneously resolved, that could account for nausea and lack of appetite that would resolve when the obstruction resolved. There are numerous other problems that could cause nausea and a decrease in appetite that are not necessarily cancer cachexia, which brings me to the next point. The person reporting states that she had been “e-mailing a doctor,” who told her that her father had “cancer cachexia.” Who was this doctor? Was it her father’s oncologist? It doesn’t sound like it, given that he or she recommended an alternative medicine supplement. How was the diagnosis of “cachexia” made? Did this doctor ever actually examine “Terry” or look at his studies? It appears to have been diagnosis by e-mail, it would seem. Also, most conventional oncologists, if recommending nutritional supplementation, would probably recommend something like Ensure or a variety of such supplements; I’m guessing that this doctor “Joy” was e-mailing about her father was some sort of alternative practitioner, not an unreasonable inference. Finally, there is the issue of diagnosis. From the testimonial, it sounds as though there were problems in coming to the correct diagnosis, particularly if it required two operations. Indeed, from the description, I’m not entirely clear about whether this man truly has bladder cancer, given that most bladder cancer is transitional cell cancer, not adenocarcinoma. Also, the description sounds classic for a colon cancer that had started to invade the bladder, rather than a bladder cancer invading outward into the abdomen. To me, the whole clinical picture sounds like carcinomatosis, a spread of cancer along the peritoneal lining of the abdominal organs, a condition I described in the context of my recent discussion of Tony Snow’s recent recurrence of colon cancer. Be that as it may, I’ll assume that the description is accurate and that this patient has carcinomatosis from bladder cancer. It is indeed true that carcinomatosis is not always detectable by CT. However, if it’s advanced enough to cause real cachexia, it will almost always be visible on CT as nodules or other findings. Indeed, this man should have probably had a CT scan at the time when he wasn’t eating, to rule out reversible pathology accounting for his nausea other than cancer cachexia.

The bottom line is that this case might indicate a response to DCA, but there’s no way it’s anything “miraculous,” as DaveScot is painting it. In the absence of objective evidence in the form of imaging in the form of a CT showing tumor shrinkage or serial CTs showing either tumor shrinkage or, at the very least, stable disease, this testimonial remains just that: a testimonial, mildly intriguing but certainly not “miraculous” by any stretch of the imagination. Testimonials don’t even rise to the level of anecdotes, and the plural of “anecdote” is not “data.” But, spurred on by the salesmanship of Jim Tassano, desperation to try anything, and the groupthink going on on the forums, people want so desperately to believe that the DCA is “curing” people that they will accept even this weak evidence:

If we put all our faith in scans, none of us would still be here, reading and posting on this forum. Remember Omega3’s scan? Now we have evidence to believe that being on DCA for a few more weeks (at a lower dose) was enough to produce results like this!

Maybe, but sadly I see nothing more than a misguided and possibly unscrupulous entrepreneur taking advantage of the desperation of dying cancer patients, leading to them to self-experiment in a manner that not only is unlikely to work but is even more unlikely to reward these patients’ risk taking with any useful data that tells us whether DCA works against human cancer. One commenter named Willis, who, although seemingly a believer, seems to be the only person approaching being a voice of sanity in that particular discussion thread, retorted:

All due respect, this isn’t a faith-based enterprise. The way you determine whether DCA is working is not based on feelings.

Indeed it’s not. I certainly do not discount the possibility that “Terry” had a real response to DCA, but it’s really not possible to tell whether he did from the information presented, given all the confounding factors. (In fact, the reason we do controlled clinical trials is to minimize confounding factors as much as possible.) It’s also possible that DCA is doing something else not related to shrinking his tumors, in which case it still might be useful but not as a cure. Whatever the case, looking at all this, it breaks my heart to see dying cancer patients abused so. As for the third piece of “evidence” presented by DaveScot as indicative that DCA “works,” it’s so utterly useless as evidence that it’s barely worth a brief mention. In essence, it’s a cat, and from the story you could actually make a stronger case that cod liver oil produced a therapeutic effect than you could for DCA. In any case, it could just as well be a case of the tumor eroding through the abdominal wall and discharging its dead interior, to the temporary improvement of the cat. Given that I don’t know a lot about cats and it wasn’t even stated what kind of tumor this was, I can’t really say all that much more than that. (Any veterinarians reading, please feel free to chime in.)

While launching the usual tired and unoriginal “pharma shill” gambits at me (given the weakness of his position, ad hominems are all he has), Dave makes a great deal of these three cases as evidence of “miraculous” improvements, but they are anything but that, particularly the case of the woman with the spinal metastases. In fact, this is thin gruel indeed, as even a commenter on Uncommon Descent astutely recognized. If this is the best that anyone can point to from this ill-considered and potentially dangerous exercise in luring desperate cancer patients to self-experiment with a drug under uncontrolled conditions and mostly unsupervised by doctors, then even though the 60 days since the first uninformative self-experiment started are not yet up, I’m becoming increasingly depressed at the thought that DCA might go the way of so many other promising chemotherapeutic drugs that showed promise in animals but failed to show activity in humans. Worse, more recently, as the publicity over The DCA Site reaches more and more outlets nearly three months after Evangelos Michelakis‘ initial report about DCA in Cancer Cell was published, I’ve started to worry that this “wild” and “untamed” self-medication will do something worse: It will so tarnish the reputation of this potentially very useful anticancer drug that it will end up hurting the chances for completing real clinical trials, presently slated to begin this spring, given the difficulties already involved due to the lack of interest in big pharma. If, as appears to be happening, desperate patients self-medicating report no real objective evidence of antitumor responses while others report problems with side effects, enthusiasm for donating to fund and for carrying out a real clinical trial might abate, further jeopardizing the further study that is needed to determine whether DCA has antitumor activity in humans, what the appropriate dose is, and what cancers it is active against. If that ends up happening, we may never know for sure if DCA is effective in humans. I sincerely hope it is, but my nightmare is that we may never know.

We have people like DaveScot and Jim Tassano to thank for that. Far from being proud of his role in this, DaveScot should be ashamed, as should Jim Tassano. They may well be jeopardizing the very goal towards which they claim to be working.

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 THobbes
    April 11, 2007

    A very nice explanation of these cases. It seems all too easy for people to not consider all the factors that lead to a situation, regardless of whether that impulse springs from simple ignorance or deliberate self-deception.

    I found this line particularly suspicious, from the bladder adenocarcinoma case:

    He now weighs 144lbs. which is an 11 lbs weight gain in about 2 weeks, his appetite has greatly improved, he is now walking on his own which he was unable to do prior to treatment and amazingly is exercising.

    Eleven pounds in two weeks? I was incredulous at reading that. I’m not saying that it’s impossible, but it just seems like a tremendous weight gain per day, especially given that the gentleman was exercising.

  2. #2 Orac
    April 11, 2007

    Excellent point. I should have caught that. It might very well be fluid accumulating, like ascites. You normally don’t gain weight that fast just from eating more, especially in a cachectic state. My bad.

  3. #3 Willis
    April 11, 2007

    I would still like to hear your thoughts on the paper, not on the clinical trial/bioethics stuff. As I’ve said before, the paper is not about dichloroacetate. The discovery that the Alberta group has claimed is that a metabolic-electrical remodeling of the cancer cell is (at least a major part of) the cause of many cancers. My understanding of what is meant by this is that the metabolic pathways of the cancer cells they studied are altered and that they now maintain the hyperpolarization of the mitochondria (that is, the mitochondrial membrane potential is substantially more negative than in normal cells; incidentally, the only information on sarcomas that I have found indicates that they do not exhibit hyperpolarized mitochondria). The hyperpolarization of the mitochondria prevents the opening of the voltage-dependent anion channel (VDAC), which is apparently a critical part of the apoptosis process. Other effects follow, including the ROS activation of the Kv1.5 channels in the cell membrane (which I believe they described as being responsible for approximately one third of the apoptotic effects of dichloroacetate). The point of the paper is in describing this mechanism, which as I’ve mentioned before, seems to be supported by several recent papers by other investigators. Dichloroacetate is the compound that Michelakis, et al. used to undo the remodeling, but the remodeling is the big science story if they are correct. I am not a scientist, so please, by all means, correct me if I am wrong about what the Alberta people meant. Between all of the ethics posts and the ones trying to make sure no rube anywhere takes Genesis literally, I’m sure I speak for lots of people when I say I would enjoy reading about science for a change.

  4. #4 Matt the heathen
    April 11, 2007

    Great post.

  5. #5 Troublesome Frog
    April 11, 2007

    I’ve often wondered exactly how fast a person can put on weight by just socking away the calories. There has to be an upper limit beyond which the body just sort of passes things through. I’m not too keen on experimenting, though. Do any doctors in the house have some idea?

  6. #6 Coin
    April 11, 2007

    While launching the usual tired and unoriginal “pharma shill” gambits at me (given the weakness of his position, ad hominems are all he has)

    The awesome thing at this point is that right now, DaveScot now and forever actually qualifies as a pharma shill. Not just “pharma shill!” in the name-slinging sense of “someone who happens to be on the same side as the medical industry on some arcane issue I have chosen to focus on”, but in a totally literal sense– he is personally and directly shilling for a group selling pharmaceuticals.

    Now mind you, DaveScot’s a Black-market Pharma Shill and not a Big Pharma Shill, but I’m not sure this is supposed to be a plus.

  7. #7 Orac
    April 11, 2007

    I like the way you think, Coin. You’re absolutely right. DaveScot is now a black market pharma shill. However, sadly, I suspect that he will consider that a plus when it is not.

  8. #8 Willis
    April 12, 2007

    I should have said Mitochondrial Transition Pore (MTP) where I said VDAC. Still interested in thoughts on the claim that a metabolic-electrical remodeling might be responsible for some cancers. Still don’t think that the fact that some guy named Dave has heard about it too is a good reason for labeling it woo.

  9. #9 Orac
    April 12, 2007

    I never called DCA or the Warburg effect “woo.” I never even called what the patients at the DCA Site are doing “woo.” Misguided, dangerous, and harmful, yes. Woo, no.

  10. #10 Willis
    April 12, 2007

    Maybe not directly, but I believe your tags may have the subject matter woo. Any thoughts on the idea of a metabolic-electrical remodeling of cancer cells?

    I am no conspiracy theorist or religious nut, just someone who is very motivated to keep up with all things cancer-related these days. I would really like to hear some thoughts on the science from someone who knows a lot more about the subject than I do.

  11. #11 Willis
    April 13, 2007

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