Ever since the beginning of this blog, there's one topic I've explored many, many times, mainly because of its direct relationship to my profession as a cancer surgeon. That topic is, of course, the question of why people fall for alternative medicine cancer "cures." It started with one of my very earliest posts and continued right up to deconstructing Presidential candidate Ben Carson's very own alternative medicine cancer cure testimonial last fall. It continues again now.
Regular readers, particularly long time readers, have already come to recognize common themes in these alternative medicine testimonials. At least I hope so. It is with this hope that I take a look at yet another one of these cancer cure testimonials. One of these common themes, of course, is that frequently those who've pursued alternative medicine have also undergone treatment with conventional medicine that was effective. A key characteristic of testimonials for whatever woo these people used to treat their cancer is that they attribute their good fortune to the quackery they've chosen, not the conventional medicine or surgery they had undergone before switching to quackery.
This confusion takes multiple forms, the most common of which is confusing chemotherapy used as the primary treatment for breast cancer with chemotherapy used in the adjuvant setting. The former is chemotherapy administered by itself with curative intent; the latter is chemotherapy administered after successful surgery to remove the primary tumor given with the intent to reduce the chance of recurrence. These sorts of testimonials are most common with breast cancer in my experience because surgery is so successful in eliminating most breast cancers, but they certainly are not limited to them. For instance, take a look at the case of Ivelisse Page, who is portrayed as having "refused chemo" and as instead having decided to be injections of "this plant" (not cannabis).
This case is not an unusual alternative medicine cancer cure testimonial. It caught my attention, though, because of its link to Johns Hopkins University and quackademic medicine, an unusual feature given that most alternative cancer cure testimonials stay as far away from anything resembling science as you can imagine.
Let's see if you can tell where the fallacy lies:
Ivelisse Page’s family has a history of colon cancer. Her father died from the disease in his late thirties. Knowing that she was at higher risk for developing the illness, she followed a healthy lifestyle of organic food and exercise and got regular colonoscopies, yet she also developed colon cancer at the age of 37.
After the diagnoses, she had 15 inches of colon with 28 lymph nodes removed, and later 20% of her liver removed, she writes on her website. But there was one important part of the mainstream oncology treatment that she declined to do – after researching her disease and treatment options herself, she completely refused chemotherapy.
Instead Ivelisse turned to homeopathic remedies and supplements, as well as mistletoe injections – a popular alternative cancer treatment in Europe. Seven years later, she is complete cancer free and is happy to say that she beat IV stage colon cancer that only 11% of patients survive.
This particular testimonial would appear to be particularly convincing to those who don't know much about colon cancer. I mean, wow! She had stage IV colon cancer, and stage IV colon cancer, as is the case with most stage IV solid tumors, is basically incurable. Well, not quite. There's a reason why colon cancer also shows up a lot in these testimonials is because there is a certain subset of stage IV colon cancer that can be cured with surgery. That subset is colon cancer that has metastasized to the liver, as long as the metastases are few enough, close together enough, and small enough to be encompassed in a liver resection. Now let's look at the story as told on her website:
A week after diagnosis, Ivelisse had 15 inches of her colon removed along with 28 lymph nodes. The pathology report would later show that the tumor had perforated the colon wall and that the cancer was present in one of the 28 lymph nodes, "a very good sign" according to the doctors. Obviously the presence of cancer outside the colon wall necessitated further treatment. Jimmy and Ivelisse consulted a variety of doctors, did much reading and research, and bathed the whole process in prayer. They concluded that conventional chemotherapy did not offer the best success rate. In her case chemotherapy would only increase her survival rate by only 10-13%. Instead they chose a complementary and alternative approach. Surprisingly, her oncologist agreed to continue to monitor her despite refusing chemotherapy.
Unfortunately, my favorite tool for estimating recurrence rates, Adjuvant! Online, is down for updating. I can't determine Ivelisse's exact stage, but I can say that, because she had a positive lymph node, she is at least stage IIIA. Specifically, she is probably stage IIIA or IIIB, although she could be IIIC if her tumor had invaded through the wall of her colon and into adjacent structures. I'm going to assume that's not the case because I'm sure she would have mentioned something like that if it were the case, because patients remember if their surgeon has to remove parts of adjacent organs in order to remove the cancer. In any case, five year survival for stage III cancer ranges from 44% (stage IIIC) to 72% (Stage IIIB) to 83% (Stage IIIA). Of course, these figures assume adjuvant chemotherapy was administered, which means that surgery alone produces cure rates roughly 10-13% lower than these numbers. What that means is that chemotherapy reduces the risk of dying in patients like Ivelisse by about a third.
Now here's the thing. Ivelisse chose an bunch of alternative therapies instead of adjuvant chemotherapy. She recurred, and, worse, she recurred in her liver as stage IV disease. Now, it's possible that she might have recurred anyway, but by refusing adjuvant chemotherapy she did not maximize her chances of going recurrence-free and surviving at least five years. Let's say she had Stage IIIA cancer. If that were the case, then she decreased her five year survival by more than one-third.
So, at this point she had at least one liver metastasis. We know that her metastasis/metastases must have been resectable, because she underwent liver resection:
Ivelisse was about a week into her immune therapy when she went in for her 5 week post operation appointment. Her oncologist gave them the shocking news that the cancer had spread to her liver. This put her at stage IV colon cancer. Ivelisse went in for surgery once again to remove the tumor. They removed about 20% of her liver. After surgery, Ivelisse began her prescribed protocol by her complementary and alternative doctor which included daily alternating injections of mistletoe and thymus, cimetidine, homeopathic remedies and additional supplements. The great news is that six years later, Ivelisse beat the 8% survival rate of stage IV colon cancer and is COMPLETELY CANCER FREE! She is still following her protocol under the care of her complementary and alternative doctor, and monitored by her oncologist, GI doctor and OBGYN.
This is a rather interesting combination of woo. For one thing, cimetidine is a pharmaceutical drug, whose trade name is Tagamet. Why it's in there, I'm not sure. (Note added afterward: Oops. Forgot about this. So there is evidence for antitumor effects from cimetidine; it's just not compelling to the point where it is routine standard of care.) As for homeopathic remedies, given that homeopathy is The One Quackery To Rule Them All, we know that it wasn't doing any good. Here's the other thing. While it's true that the five year survival for stage IV colon cancer is around 8-10%, that includes all comers, including patients with a lot of metastatic disease and patients with resectable liver metastases. It is this latter category that has a much higher chance of surviving five years. For instance, in the case of a solitary liver metastasis successfully resected, five year survival is around 45%, and in the case if isolated liver metastases (liver metastases that are close together and can be removed as a group), five year survival is around 38%. OK, these are not great numbers, but they do indicate that low volume metastatic disease to the liver is associated with a reasonable chance of survival; it's not a guaranteed death sentence.
But what about the mistletoe? While it's true that mistletoe extract has shown some promise against various cancers, I must admit that I was puzzled by this part of Ivelisse's story:
Suzanne Somers, a well known actress, singer, and author of Knockout, a book about alternative cancer therapies, utilized mistletoe extract injections as part of her natural healing protocol for cancer. But it hasn’t caught on in the U.S. the way it has in Europe just yet.
In 2011, Ivelisse and Jimmy Page founded Believe Big, a nonprofit aimed to educate people on “bridging the gap between conventional and complementary medicine for fighting cancer.” The site also provides resources about mistletoe treatments and how to find physicians who are trained in this therapy.
In 2013, Believe Big started to raise the funds for mistletoe clinical trials at Johns Hopkins Medicine’s Sidney Kimmel Comprehensive Cancer Center. The trials would take 5-8 years to complete and would study patients with different types of cancers. The cost of the trials is high, and the cancer center is still holding fundraisers and a GoFundMe campaign to collect enough money to start the process.
I've discussed Suzanne Somers' Knockout before. It's a load of cancer quackery. To get an idea of how bad it was from a scientific standpoint, consider that one chapter was all about how fantastic Stanislaw Burzynski's antineoplastons are.
In any case, this story puzzles me. The whole thing smells fishy. Look at the webpage of her doctor Paul Hindenberger, for instance, where he lists his practice as including Anthroposophic medicine, homeopathy, and salutogenesis. Now, I know that Anthroposophic medicine and homeopathy are quackery. I've written about both before more than once. (Use the search box for examples.) However, I had never heard of salutogenesis before. This introduction reveals it as a philosophy of how to maintain health that immediately drew my suspicion because it involves health continuum or as he said the fully appropriate term “the ease/dis-ease continuum” as a horizontal line between total absence of health (H-) and total health (H+)and explained that all people are positioned somewhere on this line. Any time I see the word "dis-ease" instead of disease, my skeptical antennae start twitching mightily and my quackery detector starts beeping. In any case, I was underwhelmed by what I found, but someone intrigued, if only because I had never heard of salutogenesis before. Maybe I'll revisit it.
In the meantime, I noted that Dr. Hinderberger is not on the faculty at Johns Hopkins; rather he's in private practice in "integrative medicine" in Baltimore. I also learned that this particular mistletoe extract is "not approved by the federal Food and Drug Administration (FDA)" and "falls under the category of homeopathy and is paid for out-of-pocket, at a cost of $100 to $150 per month, depending on the extract intensity and number of injections." Also, a search of ClinicalTrials.gov for "mistletoe" and "Johns Hopkins" failed to turn up a single clinical trial last night, while a search for just "mistletoe" turned up only a few open trials, only one of which was for colorectal cancer, a trial in Switzerland that didn't use the same mistletoe extract, viscotoxin.
So what I found was that Jimmy and Ivelisse Page are raising money for a trial of mistletoe with Johns Hopkins but that the GoFundMe page for the trial shows it far short of its target of $1.3 million, apparently to be run by Dr. Luis Diaz, an associate professor of oncology at the Sidney Kimmel Cancer Center at Johns Hopkins. My next question learning this was: Why, if mistletoe extract is so promising, isn't Diaz applying to the NIH for funding for a clinical trial? If it's not FDA-approved, why didn't he submit an IND (investigational new drug) application to the FDA?
Instead, this happened:
Page has been cancer-free since the operation on her liver and attributes her turnaround to a combination of surgery, diet and exercise, and the mistletoe. Now she's made it her mission to bring the extract from its European manufacturers to the United States, where the Food and Drug Administration has yet to issue its stamp of approval. She knew Diaz could help establish the necessary clinical trials. "I told her that the trials would cost millions of dollars, which I thought would subdue her a bit, but it didn't," Diaz says. "Instead, she went into overdrive." Page and her husband, Jimmy, formed a nonprofit called Believe Big to connect cancer patients with doctors who use nonconventional therapies and also to raise funds for the three-stage clinical trials. Through benefit dinners, fundraising walks, and donations, Believe Big has raised most of the $300,000 required for stage 1 testing, which could begin this summer. While Diaz says it's not uncommon for a nonprofit to fund clinical work, it's highly unusual for an individual to be the driving force.
This article is from 2014. Searching PubMed for Luis Diaz and Channing Paller (another faculty member said to be involved) failed to find any active clinical trials at Hopkins on mistletoe extract—or any clinical trials on mistletoe extract at all. So what's going on? who knows? Whatever is going on, progress towards clinical trials has clearly been a lot slower than expected, given that I found stories dating back to 2013 about this fundraising effort. Does mistletoe extract have any value in colorectal cancer? Again, who knows? Results in ther cancers have been conflicting. It might be a natural product with anticancer activity, but even if it is it's no panacea.
In the end, it almost certainly wasn't the mistletoe extract, the homeopathy, or any of the other woo chosen by Ms. Page that saved her. It was the good, old-fashioned application surgery to her tumors, because, after all, nothing heals like surgical steel. The question I have is: What the heck is Johns Hopkins doing here, and why would it allow itself to be associated with a woman who also used homeopathic remedies? Money alone can't explain it, because the amount of money raised thus far (approximately $300,000) just isn't that much in the grand scheme of things for a major academic medical center.
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Ms. Page's treatment plan (if that's the right word) seems to consist of throwing a bunch of stuff against the wall and seeing what sticks. Tagamet (best known as an ulcer medication), surgery (which might actually be effective), homeopathy (just add water), and mistletoe (I have no idea where that came from). And when the combination works, pick one at random. It must have been the mistletoe because shut up, that's why.
injections of mistletoe and thymus, cimetidine,
Probably just my lack of medical knowledge but what is "thymus" doing in there?
"In the end, it almost certainly wasn’t the mistletoe extract, the homeopathy, or any of the other woo chosen by Ms. Page that saved her.".
No, it was the prayer. She bathed the whole thing in prayer. FSM be praised.
On a more serious note, I find it interesting that even in this age of easy access to the internet, it still works to state "a popular alternative cancer treatment in Europe" to somehow support the idea that this "treatment" may be new to the reader but *they* are hiding it away from Americans. On this side of the pond, stating that treatment X is a new American development usually has the same effect.
As for John Hopkins allowing their name to be associated with... whatever this is, I think it's clear that CAM uses "churnalism" and a brute-force type of media presence to give the impression that there's LOADS of good examples of their progress and success.
Recently I've been noticing that dodgy CAM websites publish feature films on youtube for a few days and them take them down. Then they repeat this later, always with the same content that is built to be difficult to date. It has some interesting effects:
1) if you are aware of the YT release you're a special reader (rather than mainstream media watching sheep)
2) *They* will take down the film, so the CAM people need to act like this for self-protection
3) Outside of the YT pre-release they can still sell the download of exact same film. LOL.
There just isn't enough time and resources to send out notes to the press to say "We are not associated with X". I suspect that the way forward for respectable institutions who wish to stay away from this sort of stories is that access to research efforts must be easy to find and classify. People cannot be asked to spend more than a couple of minutes to find out whether or not a university is publishing/has published something about cinnamon doughnuts curing cancer.
JIMMY PAGE??? NOOOOOO!!!
Not THE Jimmy Page? Oh, okay.
I thought the same thing for a moment. :-)
My grandmother had colon cancer treated with surgery alone in the late 60s. She died last month. Not feeling too interested in mistletoe extract as the driving force behind Mrs. Page's cure.
Mistletoe is common in Germany for cancer treatments, but it is not something that science-backed doctors use. Interestingly, I learned a couple days ago that some naturopaths in the United States use mistletoe as well: http://rationalwiki.org/wiki/Michael_Uzick
This man also uses ukrain in his practice. Or, did use it, and got into trouble.
Funny, an add that I see on this page says, "How acidic is your body?" When you click on it it takes you to a page about the alkaline diet! HAHAHAHA
Mistletoe extract? Quite frankly, my biggest concern if I were to be infused with this would be the increase in the uncontrollable urge for others to kiss me. TBH, that urge is pretty high as it is right now (I assume). Any more could be a serious public health concern. ?
Actually, one of Orac's CAM apologist commenters ( prn) discussed cimetidine as well as Turkeytail mushrooms. Interestingly, cimetidine is also considered as a treatment for hairloss as it supposedly has mild effects against androgens.
Come to think of it, I have heard mistletoe woo from the OTHER prn.
But no mention of Fraser and *The Golden Bough*.
Maybe that's part of the mystique- the lure of magic from ancient Europe or suchlike.
Let's have a look to the Jimmy Page / Hindenburger connection.
There's a lady who's sure all that glitters is gold
And she's selling a stairway to heaven.
Orac writes,
What the heck is Johns Hopkins doing here...
MJD says,
Elsewhere, I'm here at the Mayo Clinic in Rochester, MN supporting a person during hip replacement surgery.
Before surgery the nurse provided an aroma packet (Lavender scent) labeled "Integrative Medicine".
The look on her face after each sniff can only be described as "BLISSFULL".
Thanks Mayo Clinic for labelling the aroma-package integrative medicine.
@TBruce: I, too, had to re-read the post to make sure it wasn't that Jimmy Page. Just like with the post on the Flint water crisis, where I had to Google to find that the Michael Brown who served as emergency manager of Flint was't the Michael "Heckuva Job" Brown who was in charge of FEMA during the Bush 43 administration. Name coincidences happen. They've even happened to me: when I first moved to the town where I live (population 1X,XXX), there was another Eric Lund (no relation) on the voter rolls, and I had to make a trip to the Town Clerk's office to avoid being purged from the voter rolls despite voting in every election (the other Eric Lund hadn't, because he had moved elsewhere by then).
Edzard Ernst has written extensively about mistletoe, including performing a systematic review in which he concluded it was ineffective, and a scathing editorial in which he recommends "mistletoe as a Christmas decoration and for kissing under but not as an anticancer drug. "
And sadly, an advisor to the NCCIH/NCCAM, Patrick Mansky wasted $1 million of NIH money to study this worthless stuff. The conclusion of the resulting paper stated "A consistent effect of the study regimen on the serum levels of selected cytokines could not be demonstrated."
Sadly, no. This would increase the urge of people standing under you to kiss. In an office environment this could be rather disruptive unless you're on the bottom floor. In a hotel it could certainly enhance the reputation of the room below yours.
I suppose there might be an effect on people who stood under your outstretched hand, and they might be compelled to kiss you. That would depend in part on your bathing habits.
@ Danial Corcos #12:
I see what you did there, and you have won the Internets for today.
Let’s see if you can tell where the fallacy lies:
We're spoiled for choice.
In continuation of post #14,
I asked a nurse (35 years experience) here at the Mayo clinic (E1 2-139 Family waiting room, Eisenberg Building) if integrative medicine has value.
She said "in my own experience" accupuncture has been very benificial at reducing nausea in many patients.
Furthermore, she said that reducing the use of anti-nausea medications is a good thing because it lessens potential side effects that can prolong recovery.
Orac, where did you get the information that mistletoe is sold as a homeopathic? Its not diluted to homeopathic levels. I've searched for clarification on the claim that anthroposofic doctors can legally prescribe it.
I thought I'd written you with info. I'd gathered
on mistletoe treatments. Sorry if there are typos--I have to dash off, but I'll post my notes below.
I first came across mention of mistletoe-based treatments in an online chats. One chat board listed 40 cancer patients who were taking it specifically to treat cancer.
Most are now getting it illegally, mailed from a pharmacy in Canada. There are Nds who advertise that they prescribe it in Utah, Kentucky, New York, Maine, Arizona, Colorado, California.
This therapy is taught at all the colleges that train naturopathic doctors. Nds do not have prescribing rights in most states, but may have DEA numbers from states that do grant them.
Sold under the brand names Iscador, Helixor or Viscosan. It is packaged in ampules for individual use. Patients obtain it mail order, mostly from Canada. There is a German mfr. who also ships to the US. The distributor requires a “prescription” from ND's or medical doctors and then mails it directly to patients.
Patients have purchased it directly in Europe. While legal in Canada and Australia, as stated on cancer.org it is not determined safe or effective by the FDA, and is not legal for distribution in the U.S.
There are FDA import refusal letters for both Iscador and Helixor on the FDA websites.
The patients transfer the drug to syringes and inject it sub-cutaneously, usually every other day, or 14 times per month. This treatment goes on indefinitely. Some patients have posted that it isn't intended to be used while on chemotherapy treatment, while other have posted that they have used it concurrently. One begins with weaker preparations and moves up to more concentrated solutions only when after they have an injection site reaction—a red, swollen, itchy spot similar to a bee sting. The reaction indicates that “it is working”.
Various Steinerian grifters are keen on the mistletoe. Steiner's rationale was that mistletoe is a parasitic plant (a hemiparasite if anyone' keeping score) which invades the tissues of its host plant, therefore it will cure mammalian cancers because they also invade the tissues of their hosts. You might think that fully parasitical plants like dodder or Rafflesia or the NZ Woodrose Dactylanthus taylorii would be twice as potent, but they do not provide the pharmacist with an excuse to go climbing trees with a golden sickle.
Last weekend I drove up to the northern part of the Olympic Peninsula and went into a large box store that serves all types of samples (I am sure you can guess which store). In the OTC section there was a product rep handing out samples of a joint improvement product. I declined his offer and said studies have shown they provide little to no benefit. His answer was studies mean nothing; you have to try them yourself to see if they help. I walked away without further argument because I knew it was pointless.
I think that statement sums up the worldview of the woo pushers.
Diaz simultaneously claims to have "never heard of the treatment", and to be cautiously skeptical, and also to have seen a great number of patients taking it:
"That's a universal feature I've seen in all patients who get mistletoe. Their [color] improves; they have more energy."
Why, oh why indeed might stoopid Woomeisters use cimetidine (Tagamet) as part of a regimen against colon cancer? Gee, could it be because there are human trials showing increased survival even with short-term use at the time of surgery or increased response to simultaneously used chemo, in addition to multiple animal studies in colon cancer models? I know you don't want to hear about clinical trial results for anything that comes from nature, but this is a pharma drug on the market, which MDs may prescribe for much less serious issues. Those who think that it's safe and affordable enough to be worth adding to a regimen are not automatically Bad.
@ MO #18
It is precisely my bathing habits (or lack thereof) that have protected me to this point, and have allowed me to live a somewhat productive life. I shudder to think as to how much more popular I would be if I dared improve my hygiene to a level that could be considered "above average". Too dangerous to even contemplate, I'm afraid.
@Dr. Chim Richalds - Preach it, brother. I know the curse that it is to be barely resistably kissable. Sadly there is no known cure but time.
Time wounds all heels.
Nowhere, because I never said that mistletoe is sold as a homeopathic. Read the post again.
Unfortunately, and as I am sure you all know, surgery and chemotherapy don't always work. Ms. Page's story starts out very similar to my husband's, although they graded his cancer stage IV right from the beginning as he had a couple of spots in his abdomen and on the outside of his bladder. Surgery removed everything visible; he had the usual 6 months of chemo and was ok for about a year. Then the cancer came back near the original surgical site; no surgery this time (except for a colostomy to bypass the blockage), but another 6 months of chemo. He was ok again for a few months while on maintenance chemo, but then the cancer came back again; two more trials of different chemo both failed, and he died this past Tuesday. Through it all, a few people were trying to convince us to use this herb or that concoction, but I knew that none of these had any evidence to support them. One factor that made his cancer so much more dangerous than others was that his original tumor was poorly differentiated; they told us from the beginning that it was more likely both to recur and to become resistant to chemotherapy, as indeed it did. But between the surgery and chemo, he did survive 3.5 years, and we are grateful for all of them.
"I know the curse that it is to be barely resistably kissable. Sadly there is no known cure but time."
It all starts in earliest childhood: eminently kissable babies with a complete lack of personal hygiene habits. That inevitably changes by the teens, even with improved hygiene. Therefore mistletoe as an adult kissability prophylactic.
Ah, yes. It's coming back to me now. I had forgotten about this; the evidence, as I recall, wasn't incredibly compelling but was somewhat suggestive.
So what’s going on? who knows?
Still raising funds, still "in the beginning stages of developing a Mistletoe Clinical Trial in collaboration with Johns Hopkins Hospital". Still blaming pharamceutical companies for not suppressing trials (because Iscador is "is a natural substance and there is not a patent possibility").
https://www.gofundme.com/BelieveBig-MistletoeTrial
as stated on cancer.org it is not determined safe or effective by the FDA, and is not legal for distribution in the U.S.
Fortunately Believe Big provides a list of doctors and DOs and naturopaths who "can assist you with mistletoe therapy" (nudge nudge wink).
http://www.believebig.org/Mistletoe-Physician.html
Uzick is on the list.
where did you get the information that mistletoe is sold as a homeopathic?
The confusion arises because the original post quotes the Baltimore Sun, where someone asserts that Mistletoe "falls under the category of homeopathy". It may be that the Sun writer is passing on misinformation from Hinderberger.
Sue @31, I'm sorry for your loss.
an injection site reaction—a red, swollen, itchy spot similar to a bee sting.
The case study of Baldur (S. Sturluson, 1220) shows that reactions to mistletoe are sometimes more serious.
I asked a nurse (35 years experience) here at the Mayo clinic (E1 2-139 Family waiting room, Eisenberg Building) if integrative medicine has value. Did you press enter before you typed her full name, SSN, and home address?
She said “in my own experience” accupuncture (sic) has been very benificial (sic) at reducing nausea in many patients.
Furthermore, she said that reducing the use of anti-nausea medications is a good thing because it lessens potential side effects that can prolong recovery. Wonderful. Nausea from what, exactly? Chemotherapy? Pregnancy? What? And which side effects? And how does she know, exactly, that acupuncture is responsible for a reduction in nausea?
(I hurled for months on end during pregnancy -- drugs were the only thing that kept me off PICC/TPN -- acupuncture, my ass.)
Thank you Sadmar
IIRC some of us looked into cimetidine ( and Japanese research on exotic mushrooms**) when commenter prn discussed his own colon cancer treatment plans @ RI.
** but not THAT type of mushroom, her doktor.
@ Daniel Corcos:
I saw that too!
also
S. Sturluson
and MOB
Hah! We got comedians here.
Rich Bly @24: If the 'joint improvement' stuff was a drink you really dodged a bullet. That stuff is incredibly nasty, so then you have to go find another sample-person to try and get the taste out of your mouth.
I'm very curious to know what kind of 'immune therapy' "Ivelisse was about a week into" when she found out about the metastasis.
I thought the only FDA approved immunotherapy was for prostate cancer, but I could be wrong. Or she could mean something totally different by 'immune therapy'.
It's pretty damn tantalizing, herr doktor bimler #23. Especially when considering the etymology of the instruction set of various filoviridae and it's ability to traverse kindom boundaries (such as the Tobbaco Mozaic virus):
http://gulf.ifas.ufl.edu/newsletters/2015/07/10/dodder-vampire-plant-or…
blockquote<Now Westwood says they're finding that the dodder removes large molecules, too — specifically, messenger RNA.
http://www.pri.org/stories/2014-08-22/vampire-plant-even-more-nefarious…
Orac, no disrespect intended. Herr Doktor Bimmler correctly identified the source of my error: the quote from the Baltimore Sun.
I usually read more carefully, but was on my way out and I wanted to post before I missed the whole discussion. Mistletoe "therapy" has been my bête noire for three years.
Nds who convince little old ladies with cancer to import and inject themselves with illegal drugs deserve a whole subdivision in hell.
The fact that Nds (and some MDs) advertise that 'service' on the internet, and get away with it is doubly offensive.
Please feel free to join me in complaining to the FTC
ftccomplaintassistant dot gov explains the process.
Bimler like porcini mostly, or so I've heard. In my neck of the woods we called them "boletes," used to be able to go out mushroom-hunting and come back with just buckets of the things.
Good eating, especially sauteed with butter and garlic.
*likes porcini, mostly.
Stupid fingers.
"The question I have is: What the heck is Johns Hopkins doing here, and why would it allow itself to be associated with a woman who also used homeopathic remedies? Money alone can’t explain it, because the amount of money raised thus far (approximately $300,000) just isn’t that much in the grand scheme of things for a major academic medical center."
Call me a cynic, but the quote from Page's blog may yield a clue:
"She knew Diaz could help establish the necessary clinical trials. “I told her that the trials would cost millions of dollars, which I thought would subdue her a bit, but it didn’t,” Diaz says. “Instead, she went into overdrive.”"
Translation: Dr. Diaz didn't want an argument with a quack so he gave her the brush off, politely, figuring he'd never hear from her again because raising that kind of cash would be an insurmountable task.
Instead she took him at his literal word and actually started raising money.
If I'm right, I'd love to see the look on his face when he realized what he'd gotten started.
I wouldn't give Diaz the benefit of the doubt.
A local onc. told an acquaintance of mine that he couldn't administer the mistletoe, at the same time, in a stage whisper, he told her she might want to try them, and which naturopath she should contact.
I wouldn’t give Diaz the benefit of the doubt.
He comes across as disingenuous. See my comment #25.
BTW, herr doktor, your humor is always spot on. Do you or anyone else know anything about anthroposophical 'medicines' getting the same kind of exemption from regulation that homeopathics so? I can't seem to find any specifics about them.
I found this on a naturopath's blog:
"Tis’ the season for wondrous happenings, and the FDA seems to have gotten caught up in the spirit by approving the Phase I Mistletoe Trial submitted by the team at Believe Big.,,"
What does it mean approve a trial? What do the believe big people need to submit--is it like a grant application?
Unfortunately I live in a county where mistletoe is legally prescribed and MDs have full freedom to use off-label indications. The approved use of these extracts are "as adjuvants to conventional treatment" as, which can not be stressed enough these days, no clinical trial of them has shown any effect on the cancer and only mild effects on subjective measures such as chemotherapy induced nausea, fatigue and state of mind. There is an outdated Cochrane-review concluding "no treatment effect" that don't seem to be updated due to lack of new trials.
As having been periferally involved in preclinical trials of several types of mistletoe extracts I can attest to their interesting effects in vitro (containing peptides showing preferential cytotoxicity towards different kinds of cancer cells) but also conclude that they have no track record in animal models of solid tumors (don't even seem to be effective in murine leukemia)... The anthroposophical idea also involves the thought that mistletoes from different host trees treat different cancers - but the differences in the extracts are minute with hardly any difference even between extracts from soft- vs hardwood hosts - which is the basis for the need of an anthroposophically trained and experienced doctor for the prescription of the "right" extract and strength. And in true holistic fashion men and women should be treated with different extracts for most types of cancers.
Just be glad that this seems to be a rare alternative over the pond.
@jane #26
I simply want to hear about clinical trial results whose conclusions aren't unnecessarily inflated simply because the product comes from nature.
Of course, credit is given where credit is due, and pharmacognosy is mentioned in several articles of this blog :
http://scienceblogs.com/insolence/2015/10/07/the-2015-nobel-prize-in-ph…
PubMed tells me that there was a lot of excitement about recombinant mistletoe leptin (Aviscumine) about 10 years ago, and a series of Phase-1 trials (mostly in Europe). The general consensus emerged that injecting the stuff into cancer patients produced an immune response -- as you would expect from injecting an antigen; egg white or surimi would also work -- but with little discernible effect on the cancers.
There is a reason why enthusiasm has ebbed, and it's not because of non-patentability.
I remember as a kid being told mistletoe was poisonous (berries, leaves and all), and it is: https://www.nlm.nih.gov/medlineplus/ency/article/002883.htm. I sure as shoot wouldn't trust an ND or other quack to make sure, on their own, that they aren't giving a toxic dose of phoratoxin (http://www.ncbi.nlm.nih.gov/pubmed/25668233).
mho: "One begins with weaker (mistletoe) preparations and moves up to more concentrated solutions only when after they have an injection site reaction—a red, swollen, itchy spot similar to a bee sting. The reaction indicates that “it is working”."
Yes, these and more severe reactions to Natural cancer remedies (including oleander) mean they are working. It 's a positive sign if you have vomiting, diarrhea or worse. It just means the cancer is dying and the toxins are being flushed out of our body.
On the other hand, the exact same signs and symptoms produced by mainstream anticancer drugs are a sign that they are poison and are very very bad.
jane @26: I am fairly sure that Orac, and most of his minions, are open to hearing about clinical trials of things that come from nature (by which I assume you mean biologically derived: salt water, gold, and UV light are also found naturally on this planet). You do realize that "things that come from nature" includes the cancer drug Taxol, along with aspirin, morphine, penicillin, and rapamycin, yes?
I seem to remember as a wee lad way back in the early '70s that a relative had mentioned anti-cancer properties of the plant. If people are going to smush it up and inject it then I'd recommend a thourogh rinsing first because, around here, it is harvested by giving it a little high velocity lead poisoning via shotgun to encourage it to let go the tree.
As fate would have it, I today endured the sublime pleasure of reading the latest installment of Dan Olmstead's** Weekly Wrap ( AoA)
wherein he informs us that professional journalists- like him - often make mind-shatteringly awful mistakes a point which he then uses to segue into his astoundingly incompetent critique of both Silberman's and Donvan and Zucker's recent realistic books about autism.
According to Dan, they get everything wrong because they believe that autism is not a new syndrome- Dachel gets it right- originating in the 1930s and they miss a few of the amazing revelations of his own book.
In addition, Andy calls it "absolute garbage" which he, of course, should recognise immediately being that he is responsible for reams of it in his own writings.
In other news...
Mike Adams presents a new music ( ?) video in which he perseverates about " burning up" all of the oil which leads to a planetary flame out ( whilst presenting ALTERNATIVE lifestyles to avoid that end) without ever admitting that we appear to be in the midst of a global oil glut. The video was created with the assistance of Liam Scheff - of all people.
Funny but I seem to see quite a few hiv/aids denialists puttering around anti-vaccine and alt med subjects. I suppose their own movement had died down.
Kim S. appeared on Jenny McCarthy's satellite radio show which is called Attention Whores Unite! ( not really) ( see @ Kim Rossi Stagliano)
** oh J-sus, I spelt it wrong so I guess you can't trust anything I say! ( a criticism Dan uses)
I don't see where Hopkins is doing anything wrong here...
If mistletoe had NO scientific promise, and was as debunked as, say, wheatgrass enemas, then Hopkins being open to a privately funded study would indeed be troublesome. But it seems the final verdict is still out on mistletoe, though the prospects aren't that encouraging.
Doesn't that put it exactly in the category of 'it's not a research priority for us, we'll be using our NIH grant apps for the things we've targeted, but if some third party will sponsor a trial, then, sure, we'd like to learn more about mistletoe'. Unlike the Pages, who are sure mistletoe is part of a God-sent miracle-cure, might not Hopkins be willing to do the trial because if it fails that's useful knowledge, too?
What's wrong with trying to find an answer if some third party pays for it, but putting the question behind more pressing ones unless/until that money arrives? Am I missing something...?
Oleander! I grew up in Tampa, and there was a long causeway on the way to Clearwater Beach that was planted with big ornamental oleander plants. Next to each one was a sign warning that oleander was extremely poisonous if you eat the leaves or flowers, or if you put the branches on a bonfire. As a kid I thought that while the flowers were really pretty, wasn't there anything LESS DEADLY they could fancy up the causeway with?
I don't know Luis Diaz, but I'm also a professor at Hopkins School of Medicine. The school gives its faculty very broad authority to pursue research and research funding, so Diaz is doing this on his own - the fact that he's at Hopkins may give it credibility, but I hope people will recognize bad science for what it is. As Orac has pointed out before, Harvard has some very prominent proponents of woo (Ted Kaptchuk), as does Columbia (Mehmet Oz) and other prestigious schools. It's unfortunate, but it's the cost of having academic freedom, I suppose. I hope your readers won't judge Hopkins poorly based on this one dodgy study. It certainly doesn't reflect my views.
Whenever I hear that something is popular in Europe I remember an exchange I overheard as a fellow. My attending talking to a drug rep. The antibiotic in question
"...was very popular in Europe"
My attending replied "So was Hitler for a while."
And walked away.
The only time I appreciated what became Godwin Law, as it was years before the internet.
around here, it is harvested by giving it a little high velocity lead poisoning via shotgun to encourage it to let go the tree.
I hope this is performed according to the lunar calendar. Steiner was adamant that the curative properties of mistletoe depend on harvesting it at the right phase of the moon.
I sure as shoot wouldn’t trust an ND or other quack to make sure, on their own, that they aren’t giving a toxic dose of phoratoxin
As the Steinerscammers delight in pointing out, Mistletoe-woo is big business in Germany, and the WELEDA apothecaries who produce Iscador* do so on an industrial scale. I imagine they've worked out how to not poison customers by now. Indeed, given that the oak trees of Europe have not been denuded of mistletoe despite the production, they're probably diluting it in quasi-homeopathic style (like Budweiser hopping their beer by casting the shadow of a hop-cone over the fermentation tank) and molecules of the active ingredients are few and far between.
* As well as Iscador there are Helixor,, Eurixor, Abnobaviscum and umpteen others, so if a mistletoe extract fails the clinical tests, the woo-mongers can blame the researchers for using the wrong product.
-------------------------------------------------
Bonus woo:
I suspect that the mistletoe peddlers are basing their scholarship more on Asterix the Gaul cartoons than on Pliny's original description of a druidic Golden-Bough-style sacrificial ceremony.
Box Turtle #62;
Perhaps, unless the warning boards fall, I'll never see a poison blossum at all. {sorry, Mr. Nash}
Naturally, herr docktor bimler #65. One stands such that the moonlight is aligned with the dispersed, shadowy patch in the otherwise denuded tree -- Not that we didn't want to know if it were accidentally a squirrel nest but rather because harvesting the endangered parasite is verboten for little kids trespassing on local military bases.
Nplima @3
Mark Crislip's response "it is popular in Europe" is "so is Fascism".
I wonder if they are woo treatments that “a popular alternative cancer treatment in Europe” in America and " a new American development" in Europe. Sort of equivalent to the list of the things proclaimed by the Daily Mail to both cause cancer and cure cancer.
I don't think fascism is populair in Europe, because we experienced the negative consequences. Now nationalism is getting more popularity, probably because the amount of refugees from countries with a different culture. I'm not agreeining with it, but in a way I can understand it, if people consider it a threat to our way of living and especially our wellfare state.
Looking at some Republican candidates, I get some weird feelings as well.
In Europe there is often pointed to the US if it is about alternative cancer threatments. I suppose the grass is always greener on the other side of the pond.
G-ddammit, the IT lackeys have broken the killfile script again as of 1040 UTC, 2016 Feb 14.
I think the original quip was that Hitler was popular in Europe for a while. Sort of a game of telephone played out in the comments.
Either way, I wouldn't sit too high on your laurels wrt Europe. Having traveled there fairly extensively, it strikes me as rather more xenophobic in general than the US. Germany is one of the worst countries in this regard, actually, despite all the "multikulti" posturing.
I would also be interested in how you would differentiate between nationalism and fascism.
Incidentally, one of my colleagues brought some Drano over last night, and it seems to have worked wonders on my sink. Then we had pizza and wine and watched Star Trek. (TNG.)
My department always did have sort of a Communist ring to it.
I've decided to be paraphernalia for smoking "this spliff" (not Nicotiana tabacum).
No, wait... What if it isn't so crazy -- not so much to *inject* but to implant into solid tumors some of these parasitic plants? -- The worst thing that could happen is that Adrienne Barbeau would have many more mancubines champions of cross-kingdom cancer survivors to uphold in front of those claiming she is not very accepting of inter-racial minglings.
http://www.imdb.com/title/tt0084745/
Someone(s) summon the internet wraith of prn? (prn, cimetidine) Hi Denice!
Although the unwashed masses typically have little clue on chemistry or biology or comprehensive CAM options, the decisions to use any CAM, or forgo chemo may not be as irrational as you think.
"No chemotherapy"
Although I will not dispute the importance of fluoropyrimidines in advanced CRC, neither am I too impressed with "conventional chemotherapy" for CRC. The maimstays, FOLFOX and FOLFIRI often have some pretty awesome side effects like projectile vomiting and diarrhea, permanent neuropathies, acute reactions, and/or myelodysplasias for often short survival improvements that harden the cell lines. Neither regimen per se is really necessary for many post surgical CRC patients or even best, for many advanced cases if doctors did their homework better with 5FU and alternatives.
Depending on where and when, Avastin and Erbitux wouldn't be/have been available either.
In poor countries/areas, these two treatments can be even worse because of limited resources, such as no ports and fewer ameliorating meds, such that peripheral infusion can be particularly brutal. For example, huge arm swelling from an abbreviated first series so painful that when offered a second line of treatment, they literally say, "I'd rather die". And do, hoping sooner (less pain) than later.
------
For conventional medicine, doctors do not read and analyze the literature very effectively on number of CRC treatment options that could save a lot of money, pain and lives. Also doctors seem to know little about markers beyond CEA, partly due to the mess they make with FOLFOX / FOLFIRI in noise and artifacts, partly due to single ill timed measurements rather than an well aimed series, partly due to poor biochemical management including lack of comprehensive "supplements" and treatments.
Part of this is the price of overdemands for high priced test data in the name of bastardized EBM for less skilled or informed practitioners. When an oncologist or colorectal surgeon snickers over the cimetidine at this late date, patients increasingly know the doctor is not very informed in their field of "expertise".
note: "...these two treatments can be even worse" refers to FOLFOX and FOLFIRI
Crislip's actual quote:
"The antibiotic in question
“…was very popular in Europe”
My attending replied “So was Hitler for a while.”
Nothing about "fascism _is_ popular in Europe".
When I summon cyberspace's lost children of doubt**( and others) they usually respond.
Hi prn! I'm happy to learn you're still around.
** band name?
-btw-
My friend Dave has been living in fear for several years because his wife decided to forego chemo/ radiation for stage 2 (?) colon cancer after surgery. I worry about her too.
@ prn
"FOLFOX and FOLFIRI often have some pretty awesome side effects like ... myelodysplasia"
Do you mean myelosuppression? Or do you have any reference for MDS?
@ Militant Agnostic
I wonder if they are woo treatments that “a popular alternative cancer treatment in Europe” in America and ” a new American development” in Europe.
Since a popular marketing ploy is to point at the other side of the Atlantic, for French peddlers as well as American ones, I would be surprised if any overlap never happen.
As an aside, first time I hear of mistletoe as a cancer remedy in Europe. But I don't get out much.
Well, Loki became famous for his trick with the explosive mistletoe, but that didn't make him very popular...
And botched blockquotes. I'm overdue for bed.
Visiting a country is not the same as living there.
I live in The Netherlands and have been in Germany quite often, having a strong bond with it. I wouldn't want to live in the US. To me it sounds like a nightmare. Never been there, but what I read and see about hardly makes it attractive.
Yes, there may be some xenophobia, but perhaps in a way this might be understandable. In The Netherlands we have a good social security system and equal rights for women and gay people. No things aren't perfect, but people consider the refugees, with a different cultural and religious background as a thread for those things. If you are unemployed, have troubles finding a home and see that some refugees seem to get everything, what you want to have as well, you might get angry. I'm not saying I agree with this, but in a way I might understand this. And if you are gay and have fought for the right to be accepted and be free to walk hand in hand with your partner of the same sex, you might not be very happy if you have to avoid this, because there are people with a different culture, who want to beat you up.
Perhaps I think a bit different, because I experienced the same in the past, from white people, but I don't want those times to return.
And then there is the antisemitism, that is also popular under certain immigrant-groups. And we have very bad experiences with that as well.
b.t.w. The US has Donald Trump, who want to close borders for all Muslims. And how many refugees from the midle-east are entering the US?
#23herr doktor bimler "Various Steinerian grifters are keen on the mistletoe. Steiner’s rationale was that mistletoe is a parasitic plant (a hemiparasite if anyone’ keeping score) which invades the tissues of its host plant, therefore it will cure mammalian cancers because they also invade the tissues of their hosts. You might think that fully parasitical plants like dodder or Rafflesia or the NZ Woodrose Dactylanthus taylorii would be twice as potent, but they do not provide the pharmacist with an excuse to go climbing trees with a golden sickle."
My course book told me there even exists a few hyperparasite plants like Dendropemon emarginatur, a parasitic plant that lives on another parasitic plant. That should be as effective as Rafflesia^2, if my math is right.
#2 jrkrideu
My first thought was it's Thymus vulgaris, ordinary thyme, but I think they talk about an organ also named thymus. If you take it from young farm animals, they likely do, it's also called sweetbread and are supposed to be tasty. I think they include thymus in the injections since it's an organ involved in the immun stystem. The thinking is that if it plays a role in building up the immune system injections of thymus must strengthening the immune system.
Thanks for the tip! I chopped up some of that for the pasta dish I made last night. I never thought of Cooking Light magazine as being into alternative medicine.
Daniel@79, for "early" and "often", myelosuppression.
I am not sure which term you might want to apply to those who are not extensively tested for multiple treatment related anemias persisting for months after treatment stopped. Lots of terminology revisions in the preleukemia-MDS-aplastic anemia space. I get the impression, the oncologists don't spend a lot of dx effort on late stage mCRC pts who are on a fast growth track to oblivion, but have multiple severe shortfalls, say platelets, WBC or WBC fractions, maybe RBC.
The papers even show some development of frank leukemia for some CRC patients with lengthy Folf- treatments. Ovarian ca has had worse leukemia problems with some of their regimens.
5-7 years cancer free is very good indeed, but I can tell you anecdotally from the experience of a 3 time cancer survivor fairly close to me that it's not a guarantee that you're free and clear.
#85 Could you tell me which ovarian regimens have highest risk of problems? I'm guessing cisplatin is one of the bad boys.
I am surprised to see such time and effort expended on a treatment that has no effect according to most of you. In 1992 I was dx with breast cancer. It was recommended to have surgery, 6 months of chemo and 5 years of tamoxifen. I did the surgery and used diet, supplements, exercise, and positive imagery to go 22 years before it returned at stage 4 two years ago. I refused many of the conventional treatments and found an integrative md for diet and supplements. Went to Germany for treatment including mistletoe which I still take. I Use a few more if your "woo" treatments that have me with no evidence of disease for over a year now- unexpected according to my oncologist who still follows me and is very interested in what I have been doing. I have been off the AI since July 2015 so only using "woo". The future is immunotherapy to help boost the immune system to fight individual cancers. Whether it is pharma or natural treatments there is no longer debate that healing cancer may be the key versus killing cancer. We need to have an open mind as the standard of care is not working.