Cancer is a bitch. Depending upon what organ is involved and what kind of cancer it is, it can be incredibly hard to cure. All too often, it is incurable, particularly when it involves the brain, pancreas, esophagus, or other organs. People wonder why, after over 40 years of a “war on cancer,” we don’t have better treatments and more cures. As I’ve explained before, it’s because cancer is incredibly complex, and cancer cells have incredibly messed-up genomes. Even worse, cancer uses evolution against any efforts to treat it, producing such marked heterogeneity among tumor cells that not only are different cancers very different but individual cells within a single cancer cell can be very different. That’s an incredibly powerful weapon. Still, there has been progress, and some have even developed strategies to try to turn evolution against cancer.
Unfortunately, many of the treatments that work and result in actual long term survival in cancer patients (more commonly called remissions or, even more colloquially, cures, although oncologists don’t like to use that latter word) involve surgery or toxic therapies such as chemotherapy or radiation. Indeed, most solid tumors that are curable are cured with surgery, and the chemotherapy and radiation are usually the “icing on the cake” that decreases the risk of recurrence, while most “liquid” tumors (like leukemias) are treated primarily with chemotherapy. These treatments are difficult, and too frequently they produce significant morbidity. On the other hand, we don’t (yet) know of anything else that works. Newer targeted therapies, with a few exceptions, have been relatively disappointing. Don’t get me wrong; they do work very well with much less toxicity for selected tumors, but it’s hard to conclude that they’ve lived up to the sometimes excessive hype.
Because cancer, other than early stage solid cancers that can be completely extirpated with surgery, are so hard to cure, it’s always interesting to see what happens when a believer in alternative medicine is unfortunate enough to be stricken with cancer. After all, real oncologists understand what an intractable and devious foe cancer can be. All too often, to the alternative cancer quack practitioner, curing cancer is a matter of readjusting that life energy, giving that herb, or cleansing those toxins (all too often involving various solutions poured into the rectum and colon). It’s all so easy, and such high success rates are claimed that you’d think that alt-med practitioners always use alternative cancer treatments. True, sometimes they do, with predictably disastrous results, but more often the stories I see resemble this story by Joanna Montgomery, a blogger who is battling cancer right now, entitled Keep Your Cures Off My Cancer. In it, she first links to the article describing her diagnosis, which is as heart-rending a cancer story as I’ve ever heard, in which she discovered her diagnosis after the birth of her daughter:
“It’s cancer,” she said, “I’m so sorry.”
It seemed that the mass discovered on my left Fallopian tube during the emergency C-section that brought our little girl into the world the previous week was malignant. My doctor hadn’t been worried about it at the time, so we hadn’t been worried either. Well, now we were worried.
Which led to:
Right before Christmas, I had a radical hysterectomy to remove all of my reproductive organs, plus some exploratory surgery and biopsies. At the time of the surgery, I was outfitted with an intraperitoneal (IP) port so that the chemotherapy I would need to could go directly into my abdomen.
The surgery revealed that the cancer on my left Fallopian tube had spread significantly and metastasized to other organs, including my right Fallopian tube, both ovaries, my uterus, my colon, and parts of my abdomen. It was staged as Stage IIIC. That was the bad news. The good news was that my oncologist had successfully removed about 98 percent of the cancer. And that the hard core chemotherapy regimen I’d be undergoing was designed to eradicate the remaining 2 percent.
Given the type and staging of my cancer, I was given a 50 percent survival rate.
No doubt a 50% survival rate is alarming to a young woman like Joanna Montgomery, particularly one who has just given birth to a new child. One can only imagine the terror she felt. So it is not surprising that she elected to do all that all she could do to live, to be there for her daughter, and that involved radical surgery, chemotherapy, and, apparently, intraperitoneal chemotherapy, which involves bathing the intraabdominal organs in chemotherapy to try to kill off any deposits that might be left behind on the peritoneal surfaces (the membrane lining the intraabdominal organs), which is how this type of cancer spreads. Indeed, in her post, she notes:
I’m long-time believer and practitioner of alternative medicine, yet when I learned I had cancer, I couldn’t get hooked up to the chemotherapy drip fast enough.
This is, of course, an eminently sensible reaction to a diagnosis of a cancer that has an approximately 50% chance of taking your life. One should also remember that, almost certainly, that 50% chance was with chemotherapy. Without chemotherapy her odds of surviving were likely less than 50-50. Be that as it may, Montgomery recognized immediately that the woo wouldn’t cure her, but that the surgery and the chemotherapy could. Nothing in life in general or medicine in particular can ever be a 100% guarantee except that we all will die someday of something, but Montgomery listened to doctors practicing science-based medicine and maximized her odds. Indeed, she even underwent BRCA testing, found out that she harbors a BRCA1 mutation that vastly increases her risk of breast and ovarian cancer, and elected to undergo a prophylactic bilateral mastectomy, just as we learned a couple of weeks ago that Angelina Jolie did.
Of course, Montgomery also pursued various alternative therapies as well, her rationale being “if it can’t hurt me and has been reported to shrink tumors and make cancer disappear, what do I have to lose?” Of course, of the alternative therapies Montgomery discusses, none of them really do have convincing evidence that they can “make cancer disappear,” except in a dish and maybe in animal models. And it sounds as though she’s done it all: consuming what she refers to as “rivers” of green tea; drinking frankincense oil; using Himalayan sea salt; juicing; eliminating processed sugars, meat, and processed foods from her diet; purchasing an “elaborate alkaline water system from Japan” for her home. As I’ve discussed time and time again, water alkalinization as a treatment for cancer is pure quackery, as are alkalinizing diets. Nor can any of the rest of these modalities cure cancer. Fortunately, they are probably harmless or, as Douglas Adams referred to Earth, “Mostly harmless.”
It might surprise readers to learn that when it comes to patients wanting to use alternative medicine to treat their cancer, I take a very practical approach to the problem. I will tell them what I think about it and, if interested, lay out the reasoning why. I might even tell them that I think they’re wasting their time and money. But then, if they insist on using it as well, I try to make sure that they are undergoing conventional, science-based treatment and tell them that they can use whatever they like alongside it as long as (1) I know what it is and (2) it doesn’t interfere with the science-based treatments they are undergoing. The reason is simple. I want the patient to live, and as long as that patient doesn’t abandon conventional science-based cancer treatment in favor of quackery, the patient’s chance at survival has been maximized, assuming condition #2 is met. I might be caustic, funny, and even contemptuous on this blog, and that’s fine. In the “real world,” however, how I behave has real consequences, and I don’t want those consequences to be to drive a patient away from the treatment that will help her. The blog is the blog, and I pull no punches here, but I try never to attack a cancer patient for her choices, no matter how horrific the quackery I am deconstructing is. Real life is real life. The two must be distinguished.
Regular readers know that over the last year and a half I’ve spent a lot of verbiage dissecting the claims of a doctor named Stanislaw Burzynski, who claims to have results far superior to that of conventional medicine using substances that he originally isolated from urine and dubbed “antineoplastons.” All you have to do is to type that name in the search box of this blog, and you’ll find numerous posts about his claims and why they do not stand up to scrutiny. Burzynski has a contingent of defenders who have targeted skeptics like me for special abuse, up to and including harassing me at work by calling my university to complain about my online verbiage critical of Burzynski and implying that I am somehow doing something wrong. (My university quickly realized that I was not.) One thing these Burzynski defenders have claimed is that “skeptics” have been abusive towards cancer patients who go to Burzynski. I’ve never done so and strive never to do so, as I’ve described before, because I’ve dedicated my career to treating cancer patients and would never knowingly do anything like that. Nor have I ever seen any skeptic do worse than skirt the edge of what I consider to be propriety, and when I have seen this I have called such skeptics out.
What I’ve never seen a skeptic do is what Montgomery describes enduring, which is the very subject of her post:
Being a target for criticism comes with a blogger’s territory. I learned pretty quickly that I have to have thick skin if I am to keep writing publicly about my personal life. However, I admit I was surprised in the beginning to experience open hostility from strangers who disagreed — vehemently — with my health care choices. Individuals who had no qualms (anonymously) blasting someone actively dealing with cancer.
Some of the loving comments I received included gems like these:
“Have the courage to REFUSE chemo and you will have a better chance of living to 100.”
“It is NOT a cancer ‘battle’ when you put all four paws in the air and blindly and stupidly trust the cancer industry.”
“Chemo is an over-priced highly ineffective chemical attack on your immune system which if it was healthy to BEGIN with you would have never gotten cancer at all.”
“When you’re ready to stop poisoning yourself, the real, natural cure is out there.”
“If you were evolved enough to recognize the truth about the pharmaceutical industry, you wouldn’t be risking leaving your daughter without a mother.”
“You are part of the problem, a pawn for the cancer machine.”
Notice the similarity to antivaccine rhetoric directed against those who choose to vaccinate. People who choose conventional therapy are “sheeple,” “stupid,” “deluded,” or somehow in the thrall of nefarious forces such as the pharmaceutical industry, which keep them from “natural” cures. Because they view proponents of science-based medicine as deluded and/or downright evil, any tactics are considered fair game to try to lure “apostates” back to the fold of believers and, if they do not return, then they are shunned (or at least denigrated). Indeed, they often show no compassion for patients suffering through cancer while lambasting those of us who treat these patients and try to advance the standard of care as being without compassion. It’s a feature, not a bug.
It’s impossible to write a post like this without pointing out the flip side of this problem: How does one react when a loved one is pursuing quackery to treat a potentially curable cancer? Looking at how Montgomery reacts to being told she is part of the sheeple duped by the nefarious forces of big pharma tells you the pitfall of trying to persuade someone who has taken a disastrously wrong path with respect to quackery. That person will react the same way to being told he has been fooled by the quack and chosen a treatment that can’t hurt him. There is the problem. Even though you’re in the right advocating science-based medicine and the supporters of quackery who told Montgomery she was a fool for accepting standard-of-care treatment, the reaction to being told either of these two things is the same: Defensiveness. Overcoming that defensiveness on the part of someone who wants to pursue alternative therapy might involve the reluctant toleration of an uneasy “integration” of quackery and science-based medicine.
90 replies on “On “helping” that is anything but”
Orac: “it’s always interesting to see what happens when a believer in alternative medicine is unfortunate enough to be stricken with cancer.”
Interesting thought. Coincidentally, a current television ad from Cancer Treatment Centers of America features a “doctor” of chiropractic who has been treated there for breast cancer. The ad says nothing about outcome, just that she’s happy with their treatment.
People who choose conventional therapy are “sheeple,” “stupid,” “deluded,” or somehow in the thrall of nefarious forces such as the pharmaceutical industry, which keep them from “natural” cures. Because they view proponents of science-based medicine as deluded and/or downright evil, any tactics are considered fair game to try to lure “apostates” back to the fold of believers and, if they do not return, then they are shunned (or at least denigrated).
Precisely opposite of my experience. Some oncologists rigid, sometimes sneering about things that are in the literature but not standard exhibited these tactics, very much resemble this comment.
… we don’t (yet) know of anything else that works.
Coley’s fluids have an interesting history that go back over a century. Of course, ham fisted pharma copies didn’t work as well but still showed efficacy.
Likewise, the literature has many promising small scale trials that are simply financially unsupported for larger trials. These off label drug uses and specialized nutrients with unusual properties can be integrated and wielded in useful ways by acute individuals. The greatest problems have been gathering, transfering and recounciling cumulative data and experience in a hostile environment, and then applying them in real time.
The Burzynski case shows serious short comings in both the general public and the regulators. How to achieve some accountability as market presence grows without trampling the rights of patients and practitioners is a thorny problem.
From my personal perspective, regulatory interference and distraints are much greater threats than experimental error or lack of effectiveness. Because of in-house technical and resource capabilities, we have been able to overcome most hurdles in real time. Most patients are severely disadvantaged precisely because more serious MD candidates to provide science based, intensive alternative medical support have been dissuaded, distrained or destroyed over the decades. This situation left fewer well qualified choices and tended to reward those with strong promotional capabilities and political survival skills rather than clinical and technical skills.
In part, I view Burzynski as an evolutionary product of the current regulatory system.
prn:
” science based, intensive alternative medical support”
What does that mean?
Helpful cookie, please…
You really don’t want to get me started on Burzynski. Seriously, you don’t.
Besides, the BBC Panorama episode about Burzynski will air next Monday, and I certainly plan on commenting then. Also, I might bite the bullet and buy a copy of Eric Merola’s Burzynski sequel, which is being released to online sources tomorrow. A review would make another lovely post. On the other hand, I really hate giving that guy any money at all; so I might not.
[…] On “helping” that is anything but – Respectful Insolence. […]
Wow. Those comments were on par with what I’ve seen the most fanatic of the antivaxxers to families who have had children die from VPDs.
Hardcore fundamentalists are very similar, no matter what what their ideology is. It would be easy to take this statement and fill in the blank with something unrelated, say Syria, GMOs, Palestine/Israel, Tories, Liberals…
“You are part of the problem, a pawn for __________.”
One thing that always bugs me about the “sheeple” comments is that they are so oblivious to the irony of it. You’re a sheeple if you don’t blindly believe what they tell you. You’re closed-minded if you question them. It’s clear they aren’t really making these arguments intelligently, any more than a child who calls another child a poopy-head actually means it in a literal sense. It’s just an insult that they are repeating because it was said with such conviction when they last heard it.
It’s probably a bit like the Emperor’s New Clothes. They are told that only very smart, shrewd, open-minded people will see that Alternative Remedy A is the right way to go, and so of course, happy to be told how smart and shrewd they are, glom onto Alternative Remedy A without really understanding it. It’s a very old tactic in both marketing and confidence tricks (the two of which are rather closely related), and it’ll go on working for a very long time.
@ Anj:
@ Calli:
If you survey alt med, you’ll find that there is a symbiotic relationship between woo and conspiracy because they need to explain why their brilliant work is not readily accepted by scientific consensus and the masses. There has to be something amiss with the experts and the masses.
They also make the mark feel as though he or she is amongst the few enlightened or superiorly gifted and so, a target for martyrdom as well- thus the regulars at AoA and TMR share in AJW’s glory.
Calli Arcale @7 and Denice @8 — There’s also an interesting parallel here to the climate-change denial propagandist tactics. You see, only really smart, savvy people are sharp enough to see that all those scientists out there are bending their conclusions to fit what the government wants — an excuse to tax people and increase social control. The irony is battleship-armor thick, of course — the deniers themselves are being cynically manipulated, but they’re being told that they’re the only ones thinking for themselves.
The deniers are the real “sheeple”.
@ palindrom
Sure. That meme is pushed all the time: Null estimates that only 5% of people are enlightened enough to emulate him. Adams says that only a few will be adequately prepared for the endtimes. Thinking Moms ( and other anti-vaxxers) endeavor to spread the word to those hypnotised by SBM, currently the majority.
But we’re the elitists.
They’re surfing the wave of paradigm shift.
In other news:
as you know, AJW lives in Austin, Adams lives outside that city and Dr B is Texas-based as well.
There’s now another woo in Texas:
Null has a new ranch there where his acolytes might visit and live as he does- exercising, juicing, meditating, learning “gourmet vegan” cooking, doing yoga, enjoying Nature, de-toxing, cleansing, healing and sitting at his feet, in awe of his wisdom. You can attend a retreat for a mere 2000 USD a week. Starting in July.
-btw- isn’t Texas brutally hot/ dry ( west) and brutally hot/ wet ( east) in July? I once flew over it and was in an airport for 2 hours. That’s it.
@prn
I think I see your problem, prn. You see, for most science-minded individuals, lack of effectiveness is a much greater threat to effective medical treatment than purported regulatory interference. After all, if it lacks effectiveness, then it cannot be effective medical treatment, no?
Can you provide examples? If the studies were properly blinded, the methodology sufficiently rigorous, appropriate controls employed and the small scale studies still delivered sufficiently promising results what exactly prevents the researchers from following up further?
There’s nothing remarkable about the fact that “alt-med practitioners” may use conventional oncology. Choosing conventional treatments in appropriate cases merely indicates that they are well-informed and paying attention, since those are objectively the best available treatments for cancer (with the caveat that certain remedies considered alternative in America substantially reduce the risk of recurrence of some cancers). A person who wisely prefers to use conventional medicine for cancer can also wisely prefer to use complementary methods for lower back pain, say, where the net benefits of the equivalent of “cut, burn and poison” are slim to none. If these modalities are tools, it is no surprise that people might choose a saw for one task and a hammer for another. Those who treat them as civil religions will find it worthy of notice when someone fails to commit wholeheartedly to one set of modalities in all contexts, just as a person who went to church on Sunday and to masjid on Friday would be sneered at as a hypocrite or waffler. Obviously, the internet loudmouths who had the nerve to insult this woman for choosing chemo fall into the category for whom CAM is a religion. But most of us have seen similar verbal abuse directed in the opposite direction by those for whom conventional medicine is a religion.
DOES
NOT
COMPUTE
If it’s science-based medicine then it’s just “medicine”. There are products that are alternative to medicine, but if they’re still “alternative” then they’re not “medicine”.
Bloody hell. Anyone for a kosher bacon sandwich, or some vegan t-bone steaks?
Have the ducks stopped quacking, Clarice?
Really? Certainly there is abuse directed at various alt-med promoters in keeping with their status as con artists. Do you have any examples of such abuse directed at people who choose alt med for themselves?
And no, telling someone politely that they are mistaken is not abuse.
(bolded text for emphasis)
What exactly is it that demonstrates that they are as you describe them yourself “objectively the best available treatments”? isn’t that the existence of actual clinical evidence demonstrating their efficacy–that they do what is claimed?
And what exactly is it that alternative treatments uniformly lack , which prevents them from being considered good, let alone great or the best treatments? C’mon, you can admit it. We’re all friends here…
Which treatments, Jane, and what evidence demonstrates they substantially reduce the risk of recurrence for which cancers? Be specific.
isn’t Texas brutally hot/ dry ( west) and brutally hot/ wet ( east) in July?
By my standards (I live in northern New England) it is, and there is a famous quote that goes something like, “If I owned both Hell and Texas, I’d rent out Texas and live in Hell.” But from what I’ve seen of weather maps, a surprisingly large fraction of the US can be as bad, or worse. I’d say Arizona and southern Nevada have West Texas beat on hot and dry, and the interior Deep South competes quite well with East Texas on hot and wet.
Still, spending $2k for a week on somebody’s ranch (not including transportation costs) is not my idea of a good time. I can and have spent a week in various pleasanter locales for less than $2k plus transportation costs.
Oh I didn’t see Jane’s comment, how exciting!
Jane, I’ve mostly been beaten to it but your entire comment deserves a:
[citation needed]
The thing is, in science, claimsrequire evidence. You can’t just say things like “My magic beans prevent cancer” without providing proof. That may fly in sCAM circles, but science is based on data.
$2k? That’s about what I spent last year for a week for two in Vienna, including transportation costs. Null’s ranch better be palatial.
Citation needed.
Whereas the complementary methods have just plain “none” net benefit, so how exactly is that wise?
Whereas CAM is a (supposed) magic wand, which in reality does nothing.
Besides, the BBC Panorama episode about Burzynski will air next Monday, and I certainly plan on commenting then.
For those of us without a cable subscription, is there any way to access this program via the net?
There is nothing “alternative” about treating lower back pain with things like yoga, massage, weight loss, and even some manipulations by a chiropractor (much of it is woo, but some of it is basically physiotherapy). Magical herbs and “energy work” are not going to fix your lower back pain, but gentle exercise and PT might. Yoga and massage, though, won’t cure your cancer.
@ Eric Lund:
@ Andreas Johansson:
he had ( has?) a 20 acre place in Naples, Florida called “Paradise Gardens” into which he inveigled fans to ‘change their lives’ according to his blueprint- also for a week @ big money ( w/o airfare); how I understand it, you get instruction in veganism, cooking, gardening, walking/ running around a track, meditation, yoga, counselling, “lectures” and “healings”. The photos of the place are still on the net- lots of palm trees, black swans, low-hanging fruit and faux-Spanish nouveau riche appointments/ architecture. ( google:picasa web / paradise gardens naples). He used to have a place in Texas years ago IIRC.
About the price of things:
really, if you leave off airfare and share a room, that amount of money can go far even in high cost places like London, NY, CA and Vienna, of course.
I only go if I can have a very nice room, near cultural activities, posh eateries, shopping, places to photograph.
I would avoid adventures in veganism and energy healings by megalomaniacs in cultural backwaters at 100+ degrees F like the plague that they indeed are.
Still, I’m sure we’ll get some laughs out of his entrprise.
Last time I saw that much anger in response to such a mild comment, I think it might have been a comment suggesting that you didn’t need to accept Jesus to avoid going to hell. Just sayin’. If your belief system insists that mushroom extracts cannot possibly reduce the recurrence of stomach cancer, even when Japanese oncologists think the science is adequate to say they do, well, you don’t have to use that product. If your belief system insists that alternative or non-Western modalities can’t possibly help your back pain, and never mind human experience or positive clinical trial data, you’re free to refuse such modalities. The rest of the population who don’t share such beliefs are equally free to use what they like – and most of them won’t really get their feelings too hurt if some guy on the internet snarls about “sCAM” or “magic beans”.
Shall we agree that clinical trials are Good and treatments not supported by clinical trials are Bad? I don’t, as it happens, think a body of clinical trials is needed to make it okay to use chicken soup or ginger tea for a cold. That’s not a scientific opinion, nor is it unscientific or anti-scientific; it’s a value judgement. For more serious purposes, clinical trials are a great help to the decision-making process; that’s also a value judgement. If we agree on that, it doesn’t mean that we agree on the many further value judgements involved, such as what sorts of clinical trials are allowable, and what questions are allowed to be asked, and what results may be accepted as meaningful versus which are to be rejected out of hand. Proponents of orthodox medicine tend to have a much narrower view of these questions than many actual publishing researchers. Thus, I might in your eyes be a Quack or Woomeister for using a remedy that in my eyes has been validated in several clinical trials and is therefore “not alternative medicine, just medicine.” Your values say those trials don’t count; mine say they do, and Science has not spoken to me personally to say otherwise.
@DW – Null is just trying to do his supporters a favour by charging them all that money. If they have too much spare cash they might be tempted to waste it on dirty, money-grubbing doctors and Big Pharma products instead and we can’t have that!
Pgp.
I’ve just had a wander over to the BBC website.
Here’s a link to their iPlayer but I have no idea if it’ll work your side of the pond.
http://www.bbc.co.uk/programmes/b006t14n
@Politicalguineapig: It’ll be on BBC’s Iplayer for a week afterwards. But that’s only available to those who have a UK IP address. I’m sure it will be quickly made available via (coughcough) other channels, though. Or even on Youtube.
Jane:
I believe this is the study you’re talking about.
Note that the research was done with Poria Cocos mushoom extract on pancreatic cell lines – that is, cells in a dish. (You may have missed this pertinent cartoon that Orac posted a few days ago.) No animal studies have been carried out and human studies will be years away – that’s providing the study results are replicated. Also, note the researchers intend to concentrate on finding and refining the exact substance that appears to work, in order to patent and market it as a Big Pharma drug.
In short, you won’t be able to cure pancreatic cancer by eating these mushrooms. Which, BTW, seem never to have been used by traditional healers to treat cancer anyway.
jane, I see you’ve ignored my question with respect to your claim that certain remedies considered alternative in America substantially reduce the risk of recurrence of some cancers.
The devil, as always, is in the details: use chicken soup or ginger tea to obtain what intended outcome?
If your claim is simply that it will make the person with the cold feel better temporarily, I’d accept the statement at face value.
But if your claim instead were that it would result in a shorter duration of illness, or prevent the likelihood of future illness, or that it will relieve the symptoms of the illness (nasal congestion, aches, fever, etc.) better than standard-of-care science based treatments (decongestants, NSAIDS, etc.) I’d expect to see actual evidence this were the case before accepting your claim.
Could you respond, and tell us which treatments considered alternative, for which cancers, and what actual evidence demonstrates they substantially reduce risk of recurrence?
If you want to see BBC Panorama, the adventurous might give ExpatShield a whirl — “allows access to some of your favorite U.K. Web sites like BBC iPlayer. It shields you by establishing a proxy connection and assigning your PC a temporary U.K.-based IP address. ExpatShield is ad-supported freeware, which is standard for Web-based tools these days.”
Read more: http://tinyurl.com/39ggkno
Orac @5
You really don’t want to get me started on Burzynski. Seriously, you don’t.
Don’t really care, nothing there that I’m interested in. Criticism of Burzynski, knock yourself out, but it does get a little repetitious.
I’d save my money on Merola until the sequel is free or fair use.
ConspicuousCarl@3
Non standard treatments based on preclinical and clinical literature, small studies, and specific information. There is a lot of unused/underutilized technology laying around in medicine that can be usefully utilized similar to advanced problem solving in other industries.
Todd W.@12
I think I see your problem, prn. You see, for most science-minded individuals, lack of effectiveness is a much greater threat to effective medical treatment than purported regulatory interference. After all, if it lacks effectiveness, then it cannot be effective medical treatment, no?
Lack of some knowledge, skill(s) and attention to detail is a common problem when things don’t work.
Another medical problem that I see is failure to generate timely, redundant checks that allow recovery from deviations that will eventually cause failure. Beyond cost, medicine often seems to assume futility and doesn’t even look.
JGC
May 31, 2013
Me: Likewise, the literature has many promising small scale trials that are simply financially unsupported for larger trials.
JGC Can you provide examples?… what exactly prevents the researchers from following up further?
Lack of financial support. I consider the companion biomarkers of CA19-9/CSLEX1 for cimetidine on a common cause of invasiveness of several cancers a total failure of followup by NIH on a clear example in the literature. Cimetidine works well in stage II and III wh
…where Avastin fails (net increase in mortality) in colorectal cancer, and appears to provide substantial benefit in stage IV CRC and some others. Most US oncologists hadn’t even heard it of several years ago.
@ Edith Prickly:
Rather than spending it on woo- 4000 USD without airfare!- a couple could “waste” their spare cash by travelling to an international cultural mecca, staying in lovely hotels, eating at first-rate restaurants, renting a car in order to go to the pristine countryside and probably even bring back purchased items that they can’t get at home.
One of the topics I studied as part of lifespan developmental psych involved recreational possibilities for adults as a therapeutic/ enrichment activity. I actually do this stuff myself and have advised others about it- e.g. people with psychological/ physical conditions, friends and family.
Have I got an itinerary for YOU! ( gratis)
In a few weeks, I’ll depart to the ‘land of mists’ ( one of the several I know) where I usually wind up on a cliff overlooking the water and spending lots of money on totally unnecessary objects and bizarre but *au courant* menu choices.
after over 40 years of a “war on cancer,”
At least you’re doing better than the War on Poverty and the War on Drugs.
This can also be done without adware.
I’ve used ukproxy.tv for keeping up with geographically-restricted content and it worked well for me. Costs money but no pesky ads or such.
Only caveat, as it tends to tweak some fiddly bits in your web-browser settings, it’s easier all ’round (if you’re a Window user) to create a separate windows ID for using the service, else you have to keep tweaking a setting on your browser back and forth (it took me ages to figure out why Amazon and Ebay kept insisting I was still in the UK after I’d caught up with Doctor Who…)
Jane,
I don’t see any angry comments – I see a lot of people asking you for specifics and for evidence. That’s not so much anger as curiosity.
You need to get off of generalities and say what you really mean and what clinical trials you’re looking at. If you’re talking about acupuncture, then the best evidence says that sham acupuncture works as well as – or almost as well as – acupuncture.
Almost. Treatments that are not supported by good science – including but not limited to clinical tries – are either unproven or shown not to work.
No, of course not. However, there’s precious little data to show that either of them will substantially reduce the duration or severity of the cold. But if you like ginger tea and chicken soup and the steam helps unblock your sinuses and you feel better – why not?
If you won’t bother to say what trials you’re talking about, don’t review the trials that don’t support your view, or don’t care about the quality of the trial, then what does that make you?
Finally, a cure! … No, wait, sorry — I misread that first sentence as: “Cancer is MY bitch.”
Jane: I don’t, as it happens, think a body of clinical trials is needed to make it okay to use chicken soup or ginger tea for a cold.
People don’t tend to die of colds. Unlike cancer, colds mostly go away on their own, and therefore ginger tea and chicken soup are fine ‘treatments.’
Peebs, Johanna, sophia8: thanks. I’ll try a few tweaks. I’m likely to spend a lot of quality time with the computer, as the weather here is rainy and likely to remain so. (Right now, it’s trolling the state by being alternately sunny and rainy.)
Since IIRC cold-related complications are mainly related to congestion, and steam is useful for clearing the sinuses, I can accept that chicken soup or any hot tea might, microscopically but plausibly, reduce the risk of complications. However, when I have a cold, do NOT get between me and the nearest pseudoephedrine: you might experience the complication known as losing an eye. If you can get enough people to go along with a trial of taking it with or without a steaming drink I’ll be interested in your results; good luck finding a blinding method for that though.
Since we have knowledgable people here — can I continue to go off-topic and ask how to make it appear that one’s browser is in Germany (I would like to be able to buy/download German e-books)?
Wow, a comparison between chicken soup and chemotherapy.
One of the useful aspects of this site is the way it has shed light on what happens to people who avoid modern medical care when there is an effective and likely curative treatment available. Then they wait until their conditions are no longer curable by a simple excision. At that point, they are in a situation like the ones Halstead faced when he invented the radical mastectomy. Hint: It’s not good.
Meanwhile, I think we have an explanation for why chicken soup (a fairly hypertonic solution) reduces swelling in that sore throat. It’s not quite as aggressive as doing a culture for strep and if necessary, treating it, but most of the time it’s just fine for a simple head cold. It doesn’t really compare with letting a cancer grow unimpeded, but hey, that’s trolling for you.
I have a thought about places like Cancer Treatment Centers of America, and their mix of standard care with a little bit of alternative hand-waving. They get to appeal to the patients who might otherwise dither for a while, thinking about alternate therapy, and get them into conventional treatment immediately. They then satisfy the desire for the other side by doing a little magic, at least making sure that the magic they use is non-corrosive and won’t interfere with the real treatment. It also lets them bill the insurance company a little extra. If the woo were more expensive, the insurance companies would put up a fuss.
Hits home, Orac.
A friend is currently on the wrong end of the odds with metastatic osteosarcoma (the surgeons at Cedars Sinai did what they could (and what they had to — no left leg and a lot less pelvis) and now it’s round after round of chemo for all those little metastases. And yes, I know the rough odds at this point.
Which is bad enough, but I’m the courier for the office “get well” cards and such, and with permission I’m also the filter for the “don’t let them mutilate you! don’t let them poison you! I have a cousin whose life was saved by ________” messages. It’s depressing on top of depression.
@D.C. Sessions – You’re doing a great job filtering that stuff from your friend, it’s a valuable service. I know it’s as hard as hell, but it’s a vital role you’re in.
On behalf of your friend, thank you, and e-hugs.
@Jane –
lol
“Some guy”? Hmm, not sure who you mean Jane, but then it can be hard to decipher what sounds like the incessant squeaking of a chew toy.
Stop avoiding questions. You claimed that there are alternative treatments available in America (centre of the known universe) that are effective against cancer in humans.
When asked for citations to back up your claims you start waffling about soup, and tea, and in vitro tests in Japan.
Nobody’s angry, we’re just bored. Every wooligan spins the same fantasies, makes the same old claims, and uses the same excuses and gish gallops to avoid backing up their wild claims.
Every troll and chewtoy that rolls through here has the same mindset. You’re all basically indistinguishable apart from your names. We’re just sad, and bored, and tired of refuting the same old claims.
We’re not baby birds, waiting for you to regurgitate whatever slop you’ve ingested from the Ullman/Adams/Null/Burzynski troughs.
Think about this hypothetical scenario Jane – GSK has formulated a new drug without doing human tests, nothing. They’ve done no in vivo studies, no phase II or III trials. They then release it onto the market as ‘Fabulux’, claiming “This drug cures cancer, improves immune function, treats arthritis, asthma, etc”. They don’t disclose the ingredients.
People buy Fabulux, and they are prescribed it. Some people feel better, but their test results show that their condition is either unchanged or deteriorating. Others get worse, some people die much more quickly than expected.
People complain, they’re worried for their health, and sad that loved ones have died or become seriously ill while taking Fabulux.
GSK refute all claims that Fabulux is either useless or dangerous. They state that any patient that died did so because they didn’t take Fabulux properly, they didn’t eat right, they just didn’t want to be cured. They know that it works, they’ve seen people cured of cancer by using Fabulux, they’ve got glowing testimonials from users who say that they’ve never felt better.
Then you become ill, and your doctor offers Fabulux. Some friends of yours have taken it, they feel great on it.
Would you trust them, Jane? Would you believe it was safe without question, and take it?
What should happen to GSK, should they be forced to offer proof of efficacy?
If I had an M&M for every time someone told me eating _____ (fill in the blank) would keep my cancer from coming back at least I would feel that I had gotten something useful from them. I would also be a lot happier eating the M&Ms than flaxseed oil and cottage cheese.
JonDo/JonDoFox slants toward German proxies if you don’t want to futz around with the lists at Proxynova.
Re: chicken soup as treatment for cold and whatnot
I believe I read this somewhere on the Science-based medicine blog: one of the readers offered the following basis for potential benefits of chicken soup.
When you are feverish, you tend to sweat and shiver, the latter meaning you are burning your energy reserves through fast muscle contractions, and chicken soup is an quickly assimilated source of water, minerals and proteins/fat to replace what you are losing.
Chicken broth may not treat that ails you, but it could go some way alleviating the symptoms.
I second the idea of having some pseudoephedrine around. The sensation of suffocation while having some cold virus at work on my sinuses could be quite maddening, especially when trying to sleep.
chicken soup cookie, please
You’ve actually hit on an important point with your “cold” comment.
Colds are annoying, but generally, they are self-limited, lasting about 10 days, give or take. Most of the time, they aren’t severe enough to try to cure. That means you go with palliative care–you treat the symptoms (pseudoephedrine, ibuprofen, maybe loratadine) and then you do anything you can to make yourself feel better.
I don’t need a clinical trial to know what makes me, personally, feel better. In my case, having something hot go down my throat makes me feel better. That’s tea, for me, and I have been drinking a lot of it this past week as I do have a nasty cold right now. Chicken soup is also hot, and feels nice. I also like popsicles–they’re cold and help numb the throat a bit.
But actually, because the cold is self-limiting, it doesn’t really matter if I drink tea or water or gatorade or lemonade (though I should be avoiding caffeine to stay hydrated). Eventually it’ll go away. Attributing that to the tea or chicken soup, now *that* would require a clinical trial. I would also not call the tea or chicken soup a “treatment.”
Cancer isn’t self-limiting, and it isn’t as relatively harmless as a cold, so you should be doing more than attempting to alleviate symptoms.
However, if you are getting chemo, radiation or surgery for your cancer and you find that drinking tea makes you feel better (and I actually do often feel much restored after a fresh cuppa), you really don’t need a clinical trial for that either. Might be a good idea to ask your doctor to make sure nothing in the tea will interfere, but apart from that?
By all means, take some tea!
(Full disclosure: I had a job selling tea once, but that was years ago. I am no longer a Paid Tea Shill. … I do still enjoy it, though.)
ebrillblaiddes: Oh, yes. While I like my tea, soup and brandy with hot water, lemon and honey, I often get bad colds (as in, oh,god, I can’t talk without feeling like a swordswallower.) Then it’s time for the psuedoephedrine, which sadly, has never been the same here since they reformulated it. And you need id to buy it in my state now; grrr.
@MIRose – Same here, not for cancer but for my other health woes. If I had a quid for every muppet that said I could fix congenital problems with: “superfoods”, dietary restrictions , cutting out dairy/caffeine/sugar/whatevs or avoiding “allopathic” meds, then I’d be able to afford a carbon fibre exoskellington with built-in rocket boosters and LED mood-lights.
Sod that. They’ll pry my fentanyl and my Pepsi from my cold, dead hands.
@Heliantus – Yeah, that suffocating feeling is awful. Trying to eat with a totally blocked nose makes me feel like I might black out.
Sudafed does something that soup and tea cannot do, it knocks me out and lets me get some sleep. It is invaluable, especially if we both have colds. Other Mrs elburto becomes a hyperactive goblin if she takes it, and being knocked out shields me from hours of manic babbling and giggling!
@Khani – You were a shill for Big TeaFarmer? I am speechless. Who can I trust any more?
@PGP – I know a couple of people, mostly in the Midwest and the south who cannot get Sudafed for love nor money but ironically, they could get meth on any corner. So much for the War on Drugs eh?
Personally, I like ginger *in* my chicken soup when I have a cold. And lots of hot fluids. They make me feel better, even if they don’t shorten the duration of a cold. (My GP grandfather used to say “A cold lasts 7 days if you treat it, a week if you don’t”)
But then, I’m a sucker tor any excuse to make my grandmother’s chicken soup recipe.
#52 elburto
Did you know that tea is totally natural, and it will cure anything*?
* for certain values of “anything” that mostly include bad moods. Void where prohibited. Offer good on mainland Hawaii only.
@Khani: I thought it was illegal to have bad moods on mainland Hawaii?
If you want to see BBC Panorama, the adventurous might give ExpatShield a whirl — “allows access to some of your favorite U.K. Web sites like BBC iPlayer. It shields you by establishing a proxy connection and assigning your PC a temporary U.K.-based IP address. ExpatShield is ad-supported freeware, which is standard for Web-based tools these days.”
Read more: http://tinyurl.com/39ggkno
PC is an exact term. The thing will not work on my Mac or on a Unix box or on an Android device.
“Overcoming that defensiveness on the part of someone who wants to pursue alternative therapy might involve the reluctant toleration of an uneasy “integration” of quackery and science-based medicine.”
Thanks for that Orac. I deal with this problem regularly and have found that adopting a hard SBM based position is of no help in persuading people not to eschew modern medical approaches. It is best to let them dabble whilst encouraging the use of treatments that actually work.
Thanks again Orac the work you do on your blogs is helping legions of people with cancer wade through the morass of woo out there on the net and make sensible choices. I for one cannot thank you enough
#55 Yessss. Obviously if you have a bad mood on mainland Hawaii you’re just not trying hard enough so the tea won’t work anyway. It’s your own fault, see. If you really wanted to feel better it would work.
elburto: Funnily enough, I’m in the midwest. Far far away from the tornadoey regions. I’ve been offered marijauna a couple of times, but never meth. Then again, I spent a while on add medication, and uh, rotting teeth just aren’t my thing. Plus I know a neighbor who lost a place he owned due to a meth lab. He didn’t live there, luckily.
One more thing about chicken soup: the salinity (if you don’t overdo it) makes it a whole lot easier on sore throats, as does the fat content.
Not bad on iffy tummies, either. About forty years ago in Mexico I came down one of the nameless GI infections and for nearly a week chicken soup was the only thing I could keep down. Lost about twenty pounds to fever and fasting, which I didn’t need then. Now I could stand to lose them but no way would it be worth the misery.
even more colloquially, cures, although oncologists don’t like to use that latter word
Because oncologists so seldom qualify for that word on so many types.
Surgeons have advanced much more in the cure direction for mCRC during last dozen years than oncologists. In fact I haven’t even bothered talking with an oncologist for over two years, and that last one was simply for insurance purposes. Dolt sneered over things that I realized had not read enough papers to optimize by reducing common injuries and maintaining activity.
@Khani – So all you are saying is “give teas a chance”?
Everybody’s talking ’bout Earl Grey, Lapsang, Oolong, Rooibos…
Sorry couldn’t resist!
@PGP – Meth hasn’t really caught on over here, except as a gay club drug ‘Tina’, but I know it’s devastating parts of the US, hence the restrictions on decongestants.
The rotted out stumps of teeth are not nice. We see a bit of that in a local village, where several residents use methadone to treat heroin addiction, that stuff’s caustic. When I worked for the NHS methadone users made up a big chunk of orthodontal referrals.
When a massively extended course of corticosteroids made my partner’s teeth disintegrate she got some pretty horrific treatment from pharmacists who believed it was related to illegal drug use. The pain was horrific too, so I can imagine that in a drug abuse situation it becomes a vicious cycle where the drugs can create painful side effects, so more drugs are needed to block out the pain, which causes more side-effects…
Sad situation all around really.
@MI Dawn – I like a good curry with lots of garlic and ginger. It has the added benefit of tasting and smelling strongly enough to overcome the awful cold side-effect of killing taste/smell, and making food taste like wet cardboard.
#62
Bwahahaha!
I like a good oolong. They have kind of a nice crispy flavor to them without being dry (darjeeling is not my thing, and lapsang souchong just tastes like a campfire to me).
Vasha,
I suggest a Virtual Private Network. There are free German ones available – Google “free German VPN”. The best way I have found is to download and install OpenVPN (free) and then set it up with the details of the VPN you want to use – it’s very easy. There are paid VPNs available if you need to download or upload larger files. I use Torguard, which has VPN servers in various countries (my IP address is currently in Romania) but not, yet, Germany.
How was pseudoephedrine “reformulated”? Yah, the dubious phenylephrine is on the shelves now, but the stuff behind the counter should be the regular stuff.
I’ve always thought kimche should be more widely recognized as a cold and sinus therapy.
Some types of Sudafed were reformulated using phenylephrine, despite it having no effect whatsoever as far as I can tell, unlike pseudoephedrine; RCTs agree with my subjective experience.
@elburto: I love a good curry. My ex-lover taught me to make curry. Everyone I make his recipe for asks for it…it’s awesome.
Re MI Dawn I like ginger *in* my chicken soup when I have a cold.
I quit chicken soup for colds. I switched to Hot and Sour.
Krebiozen, I think Narad’s point was that pseudophedrine can’t be reformulated because that’s the actual chemical name (common, not IUPAC) of the compound. I’m with you on the efficacy vs the phenylephrine substitute. There’s a reason why the originally marketed the other one.
I’m with you on the efficacy vs the phenylephrine substitute.
It doesn’t make it any easier to discourage pharmacies from selling homeopathic remedies or other forms of placebo when they also have shelves of phenylephrine preparations which are every bit as ineffective as homeopathy.
Chemmomo is correct; PGP seemed to be suggesting that the stuff “you need id to buy” has “never been the same.”
Chemmomo:
Which is what we do. It helps to live less than two blocks from a good Chinese restaurant (though sometimes the delicious smells can be distracting).
(Whether this has works has also been called into question. Including cough syrups in the restriction has long perplexed me, as it seems to be a hopelessly inefficient route to extraction.)
Including cough syrups in the restriction has long perplexed me
Fairness, Narad! You can’t allow the sale of an effective linctus while banning the effective tablets; that would tilt the playing field!
I try to avoid Sudafed, it is a heart stimulant, and it wears off after about four hours. When I have a cold I will use the Afrin nose spray only at night.
But since I have not had to go to those lengths since getting regular influenza vaccines during the last five years.
Oh, and I know a cold is not influenza. But I just haven’t had the bad complete stuffed up sinus conditions requiring unplugging for that period.
@elburto: on the subject of diet/supplement/crap curing congenital conditions, here’s a story for you that will make you explode in horror, as it did me when it happened:
There’s a guy I know who also has Crohn’s Disease, it was being managed quite effectively with silicilates (like mine is). Then he met and became besotted with this girl who was heavily into woo. She must have been tremendous in bed given what happened next.
She convinced him the medications were harming him and he’d be cured of Crohn’s completely if he ditched the meds and replaced them with all sorts of supplements, and adopted a strict macrobiotic/raw food diet. So he did… apparently within a week he started feeling sicker and sicker, and was losing weight. She convinced him it was his body expelling toxins, and if he only kept at it he’d arrive out the other end completely cured.
Fast forward three months… he’s in intensive care with acute renal failure, having lost nearly 1/4 of his body weight. His mother authorised all the intense treatment, because his woo-nutty girlfriend was insisting it was still toxins and wound up getting barred from the ICU. When he told her he was giving up the diet she hit the roof about how he was poisoning himself and their future children. That was when he really told her where to go.
He had to have a resection and spend two years on steroids to get everything under control again.
Here in Australia, you can get pseudophedrine if you hand over your driver’s licence and go into a police database. Had the horrible runny nose a couple of weeks ago, so had to get some more Sudafed. I was offered the phenylephrine substitute, but I’d never heard of it, and knew that pseudophedrine would do the trick, so I went into the database. OMG, I am a criminal! Glad now I rejected the substitute.
I have a friend who’s a former pharmaceutical chemist, she thinks the whole thing is laughable. Yes, there are probably backyard labs that are extracting the pseudophedrine to make meth, but according to her the quantities of over the counter meds you’d need to buy would make the whole thing counterproductive for commercial quantities (and crappy quality to boot).
She’s more inclined to think the serious labs are getting the pure pseudophedrine on the black market.
A useful though not entirely reliable source of pseudeffy here.
Christine — well, there are a distressingly large number of not serious labs. Including what I think is the most frightening version, the pocket lab. You mix up the ingredients in a two-liter soda bottle and hope to god it doesn’t explode from the overpressure. Low-grade meth? Maybe, but people are definitely making and using low-grade stuff, and ruining their lives with it.
Holy crap Calli, that’s frightening. I didn’t realise it was that easy. And the low grade stuff is probably more harmful. Thanks for the correct/
In the U.S., it seems to depend where you are. I’m not sure what the time constant would be for the phenylacetone crowd to fill that gap for the one-pot crowd.
@48 : You mean it’s like…food? That’s just crazy enough to work! (What amount of crazy does it take for something to work, btw, and how should crazy be measured?)
Re ID to buy real Sudafed: I’m just glad I can buy it at all. I lived in Oregon when the dreaded reformulation happened…strictly scrips, and I thought it was that way everywhere until I moved after college. I wasn’t paying attention and bought a box of reformulated crap; very disappointing during allergy season. If that’s the alternative, you can database me all day. Which is not as dirty as it sounds.
OT: Is there a stomach bug sweeping the nation that I haven’t heard about? Because guhhh. Wishing there were a vaccine I could have gotten for this.
For a while here in Aus we couldn’t get Sudafed without a prescription, and even then it was limited to 10 tablets and no repeats. I’m happy to say that the cold/flu formulation is available over the counter again and I’m happy to supply my driver’s licence to get a pack, because the alternative formula does not work at ll with my sinuses.
So it’s winter, I have the sniffles, and am happy in the knowledge that should it turn into the dreaded head cold I can get some relief with my Sudafed, hot & sour noodle soup, and a good cup of Oolong, orange pekoe, or just plain strong breakfast blend tea 🙂
Khani, I find darleeling just a little weak for my tastes, but if you blend a good darjeeling 50/50 with a good assam you may get the best of both worlds 🙂
Narad, Chemomo: I think they reformulated the sudafed, not the chemicals, sorry if that wasn’t clear. Even the ‘good stuff’ seems like it’s been diluted.
Elburto- Methadone is NOT caustic, or bad for your teeth, that is a myth, along with other falsities like “it settles in your bones”, etc.
The reason there are so many methadone patients with bad teeth is because of all the years they spent as heroin/pill addicts, often while also abusing multiple drugs like meth, coke , alcohol, tobacco. Only the most hardcore addicts get on methadone, and addiction is devastating to ones health, often because you quit caring for yourself- you don’t brush, floss, fill cavities, or fix broken teeth, let alone see doctors. They destroyed their teeth living the addict life (with fights, malnutrition, etc), and now that they are doing better (on methadone) they can, and will, actually deal with fixing their health/teeth.
Methadone programs are also highly regulated, so people that use them come in contact with counselors, nurses, doctors, who then send them to fix their teeth, even if they wouldn’t have on their own. Methadone works very well for opiate addiction, often with nothing else does.
The town I live in is FULL of drugs of all types, and the human toll is awful.
They limit Sudafed here too, but it has done little to stop the use of meth. It seems to lower local, amateur, meth production, which is good, but then demand just means more meth is brought up from Mexican cartels, so overall, its a negative.
I am in the PNW, in the center of the woo-niverse and mass drug use. I usually just read, and don’t comment.
Keep up the good work Orac!
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