Respectful Insolence

As sometimes happens, last week I let myself get tied up writing multiple posts about a single topic, namely the promotion of an antivaccine movie by a school board president in California, apparently as part of an attempt to influence California legislators who are considering a law that will make philosophical exemptions for school vaccine mandates easier to obtain. As a result I didn’t get around to blogging about something else that happened last week. It’s a topic near and dear to my heart as a cancer surgeon. On second thought, perhaps “near and dear” is exactly the wrong way to describe it. Rather, it’s a topic that enrages me, because I hate to see children endangered by the woo-filled beliefs of their parents. It also turns out that it’s a perfect storm of quackery combined with conservative wingnuttery. It’s a story that first turned up on–where else?–WorldNetDaily, State demands that child take cancer-causing drugs. It didn’t take long for–again, who else?–that über-quack Mike Adams to pick up the story, calling it
Medical terrorism in Michigan? Parents forced by the state to poison their child with cancer-causing chemicals.

Before I get to the loons’ accounts of the story, let’s take a look at legitimate news sources, which, it turns out, is from my home state. Also, oddly enough, the original story dates back to last year. As Elton John would sing, we’ve seen that movie, too:

Parents who decided to discontinue chemotherapy treatments for their son face a court hearing after Helen DeVos Children’s Hospital accused the parents of medical neglect, according to published reports.

The case involves Jacob Stieler, a 10-year-old boy from Skandia in the Upper Peninsula who was diagnosed with Ewing sarcoma, a rare form of bone cancer. He reportedly underwent three months of chemotherapy, which caused him to feel sick, depressed and nauseated, his parents said.

According to WOOD-TV 8, Jacob’s mother, Erin Stieler, said she and her husband decided to end chemotherapy treatments after two PET scans showed no signs of cancer. WOOD-TV said hospital officials complained to the state Department of Human Services, which is taking the parents to court.

Here is a news story from November:

This story is all too familiar. Remember Abraham Cherrix? It was pretty much the same story. He completed a couple of rounds of chemotherapy, felt sick, and refused to have any more. Actually, it sounds more like the case of Katie Wernecke in that her parents refused radiation therapy and additional chemotherapy after her Hodgkin’s lymphoma responded very well to her initial cycles of chemotherapy. You can see that this sort of false sense of security is at the heart of the case from this video:

This sort of belief that the cancer is gone if the PET scans and CT scans are clear after the initial course of chemotherapy is actually not all that uncommon an occurrence. Not the parents refusing further chemotherapy for their children; usually parents agree to do what their child’s oncologists recommend in these cases. Rather, it’s not at all uncommon for parents of children with cancer patients to be lulled into a false sense of security by an initial excellent response of their tumors to chemotherapy. This initial response will sometiemes lead them to question why they need further therapy if the tumor is “gone.” The problem, of course, is that the tumor might be gone in the sense that it can’t be detected macroscopically. That doesn’t mean there aren’t microscopic tumor deposits left that could blossom into recurrences.

What particularly galled me about the news story above is a segment where the reporter discusses how experts at the local hospital and the University of Michigan argue that, without additional chemotherapy, Jacob’s cancer is at high risk of “roaring back with a vengeance” and then juxtaposes that with Google searches claiming a variety of opinions and prognoses on different websites. To me, that’s no different than when antivaccinationists pit their Google University knowledge against the knowledge of experts. Pediatric oncologists who have actually reviewed Jacob’s case and examined him are in a better position to interpret the existing scientific evidence base regarding the treatment of Ewing’s sarcoma (which is the type of cancer Jacob was diagnosed with in March 2011) and apply that evidence to determining the best treatment recommendation for an individual patient.

Ewing’s sarcoma is a pediatric tumor that most commonly occurs in bone. According to some news reports, Jacob’s tumor was wrapped around his spinal cord, which tells me that it must have been somewhere in his spine. In general, the current standard of care for Ewing’s sarcoma involves neoadjuvant chemotherapy to shrink the tumor as much as possible, followed by surgery and/or radiation therapy to remove the local disease, completed by consolidation chemotherapy to eliminate occult metastatic disease. The local therapy is usually surgery to remove the tumor. Since Ewing’s sarcoma can occur in limbs, part of the purpose of neoadjuvant therapy is to make amputation unnecessary and allow limb-sparing surgery to be done. Again, not knowing the details of Jacob’s case, I can’t say exactly what the plan was. However, the tumor was found in the spine, and Jacob underwent surgery to remove it for diagnostic and therapeutic purposes. (At the time, the identity of the tumor was not known.) However, it was apparently only incompletely removed, which suggested to me that the plan was to give chemotherapy, followed by radiation to the area where the tumor had been incompletely excised, and then followed by consolidation chemotherapy.

In other words, doctors did not recommend additional radiation therapy and chemotherapy for Jacob because they want to poison him. They recommended it because evidence suggests that it is the best way to maximize his chance at cure. If the tumor comes back, it’s likely to come back in the lungs, another bone, or another organ, and then the prognosis will be absolutely dismal. Worse, just like bacteria exposed to a little antibiotic, the tumor is likely to be more resistant to chemotherapy. That is an outcome to be avoided if at all possible.

The Stielers won their first round in court, but apparently the State of Michigan is appealing.

That is, of course, not the impression one gets reading NaturalNews.com:

Government is not merely denying parents and families the right to consume healthful whole foods such as raw milk; now rule-by-force government authorities are threatening a Michigan family with criminal prosecution if they do not poison their child with chemotherapy chemicals — even though their child shows no signs of cancer!

Adams then goes on and on and on in his characteristic fashion about how these chemotherapy agents can actually cause cancer. This is actually true, but deceptively presented. The risk of secondary malignancies is real, but in general relatively small and certainly much less than the risk of dying from the primary malignancy if inadequate treatment is given. In other words, the only pediatric cancer patients who have to worry about secondary malignancies are those who survived their cancer because of–you guessed it!–having undergone life-saving chemotherapy.

But Adams is only getting started:

If you say “no” to an oncologist — who is very much like a car salesman in the sense that he has a financial stake in your decision — you are costing him a loss in profits. He doesn’t like that. His BMW needs an upgrade, you see, and he’s hoping to fly to Hawaii to catch another golf game next week, and to do that, he needs another $20,000 in health insurance reimbursements from your policy. So if you say no, he might just be so angry that he calls the police on you. “You dare to say NO to ME? You’ll see who has the power NOW!”

You can almost hear the “Muah ha ha ha!” following the whole scene.

Did he really write that? Muah ha ha ha”? Seriously? What is this? A comedy? Well, yes, maybe it is. Adams is always so over-the-top that it’s hard to know whether he really believes what he’s writing or not. Of course, he’s only getting started. Those of you familiar with his “work,” probably know what’s coming next, and Adams doesn’t disappoint:

Yes, these pediatric oncologists are some of the most evil, unethical, and downright criminal minds you will find in the medical system today. Far from helping children, they are engaged in mass poisoning crimes that rival the gassing of Jews in Nazi Germany. In fact, some of the chemicals come from the very same sources — drug companies that were once part of IG Farben, the Nazi war crimes chemical conglomerate that was found guilty of crimes against humanity. Today’s Bayer company is an offshoot of IG Farben, in fact, and the former chairperson of Bayer, Fritz ter Meer, was found guilty of war crimes in the Nuremberg trials.

Which leads him to admonish his readers:

So the next time you see a pediatrician pushing chemotherapy, just think to yourself, “Nazi war criminal!” Just because they have a medical license doesn’t mean they aren’t committing crimes against children. Hitler made it the law that Jews should be exterminated, but just because something is the law doesn’t make it right, obviously.

One wonders what analogies Adams would use if Hitler had never lived. We can only speculate about that, but there’s no doubt about what Bob Unruh at WND blames this case on. No, it’s not Hitler, at least not directly. Given how many times right wingers have made likened President Obama to Hitler in a most ridiculous fashion, it shouldn’t be a surprise that Unruh blames this case on Obama. Specifically, he blames it on the Patient Protection and Affordable Care Act, which is often referred to derisively by its opponents as “Obamacare.” He peppers his article with sentiments like “in what is being seen as a preview of a fully implemented Obamacare” and concerns that this case is about enforcing a “national standard of care” is “same type of concern that has been raised by many organizations and individuals about Obamacare.” I never could figure out what the problem was with having a national standard of care myself, as long as it’s based on science, but such a thought seems to disturbe some people greatly.

As I’ve always said before about cases like this, such as those of Katie Wernecke and Abraham Cherrix, I realize that the Stielers love Jacob and want nothing but the best for him. Witness their video of the party they gave him when he was shown to be grossly free of cancer if you don’t believe me. I also realize, as much as it is possible for someone who hasn’t had a child with cancer, that it must be horrible to watch the child you love suffer from his treatment, so bad that you want nothing more than to make it stop. Yet, unfortunately the Stielers have been lulled into a false sense of security because of the excellent response to surgery and chemotherapy, and now is not the time to be complacent. It’s hard, horribly hard, but Jacob needs to complete his therapy. He might get away without any more therapy. Might. Isn’t it better not to rely on “might”? Isn’t it better to listen to pediatric oncologists who have devoted their lives to treating cancers of this type when they say that stopping therapy now is dangerous, rather than relying on prayer, which, if the WND story is to be believed, appears to be what the Stielers are doing now?

The answer should be obvious.

Comments

  1. #1 Lawrence
    March 26, 2012

    At the end of the day, I do hope that his Cancer doesn’t return – I would never wish that experience on anyone, especially a child.

    But, I only need to look into the faces of my own children to wonder what the hell these parents are thinking in not making sure their child has the best possible chance for survival….

    As far as Mike Adams – there is a special place in hell for people like him.

  2. #2 palindrom
    March 26, 2012

    So, he’s arguing that because some of the drugs come from companies that were once part of IG Farben, they might as well have been produced by Nazis.

    I’ll have to check my files, but this may be the single stupidest argument I have ever heard.

  3. #3 Old Rockin' Dave
    March 26, 2012

    I thought Obamacare was supposed to be all about death panels rationing care, and now they’re complaining that it’s really insisting on giving too much care. Do these fools ever listen to themselves?
    I can’t wait to see the knots they tie themselves into if the Republicans win this fall. They plan to introduce a program called See-if-I-care.

  4. #4 Eric Lund
    March 26, 2012

    Quoth Michael Adams:

    If you say “no” to an oncologist — who is very much like a car salesman in the sense that he has a financial stake in your decision — you are costing him a loss in profits. He doesn’t like that. His BMW needs an upgrade, you see, and he’s hoping to fly to Hawaii to catch another golf game next week, and to do that, he needs another $20,000 in health insurance reimbursements from your policy.

    Pure melodrama. He seems to assume that the doctor has to have a brand new Beemer (which would cost him a whole lot more than $20k) and spend several thousand bucks on yet another golf trip to Hawaii (maybe it’s just me, but I would think few doctors would make several trips a year to Hawaii just to play golf–Hawaii is a long way from anywhere else, so about the only doctors who would do this are the ones who actually live in Hawaii). That’s not how I understand the way insurance works: the reimbursements are just that, designed to cover reasonable costs of prescribed treatment, and probably at most a few hundred of that $20k would be to compensate the oncologist for his time.

    Or maybe Adams assumes that most oncologists operate along the lines of Burzynski: cash up front for the treatment, whether or not it actually works.

  5. #5 Donna
    March 26, 2012

    I wish Unruh hadn’t brought up “Obamacare” in this situation. Using this story as an example of what’s wrong with universal healthcare makes conservatives appear to be grasping at straws for arguments against it. There are perfectly legitimate reasons to be opposed to the healthcare law, none of which include concern over *aggressive* treatment for disease.

  6. #6 Ken
    March 26, 2012

    “Yes, these pediatric oncologists are some of the most evil, unethical, and downright criminal minds you will find in the medical system today”

    This just shows how little knowledge or experience he has with the topic.

    If they were only interested in money, they would not be doing ped onc, which is both difficult and on the low end of the medical pay scale. There are far more lucrative jobs in medicine.

    Pediatric oncologists spend their days caring for the sickest of children. They work an incredibly difficult and tragic job, and deserve our admiration, not this slander.

  7. #7 marciac
    March 26, 2012

    This story is so sad I have a hard time not choking up. Especially since I have many Facebook “friends” who post Mike Adams, Natural News crap regularly. I try to respond logically and with a rational rebuttal, but I always get the sound of crickets in return. How frightening to think there are children out there who’s parents listen to such utter nonsense.

  8. #8 RobertC
    March 26, 2012

    I’ve taken my son into operating rooms more times than I care to remember, although each is a vivid memory.

    He is a heart patient who had his first Open Heart Surgery at age 5 days.

    Through all the ups and downs in the back of my mind is the thought that at least he has a chance, an opinion cultivated while feeling sorry for myself the day of his first surgery and seeing a kid in a little red wagon whose skin was the color of a manila envelope, presumably due to liver issues. At that point, I knew there was always someone sicker and I resolved to be strong and do my tiny little bit part to make others lives a little easier.

    That has been as simple as redelivering gifts that made it to the wrong floor, helping a flustered Mom and Dad with their trays in the cafeteria so they could tend to a child, being an escort to a lost and tearful family. Small things.

    Anyway, As to dealing with inflicting trauma on a child for their own well being, it takes a lot out of you. And it is absolutely the right thing to do. I’ve taken Josh into ORs as he laughed with the Docs and Nurses, One told him he was going to use his Gameboy while he was sleeping, then 7 year J said to him “No, you are not! you have work to do” as he handed me the toy with instructions to keep it away. You don’t get much more relaxed than that.

    Another time, around 10 years old, as we wheeled into the OR he looked at me with wet eyes and said “I don’t want to do this today”

    You know what, both of those days and all the ones in between sucked.

    The extended ICU stays, lung damage, cardiac rhythms, heck, he even has a piece of an angioplasty balloon in his lung somewhere, all of that was necessary for his long term well being.

    We never considered not treating because he “looked ok today”

    I understand parents desires to not cause pain. I really do.

    I used to rely on faith myself, never entirely, but as a feel good can’t hurt thing. Not anymore. Not even a little. I am even now not on speaking terms with a brother because he insisted that I get J seen by his guy “with a masters in herbs”. My refusal was ill met. You see, I thought a new Melody Valve was a better idea than quackery. (Medtronic Melody is the coolest thing I’ve seen in a long time, btw)

    So, I understand the desires, I understand the pressure, having fought them myself, but the greater good demands the best available treatment.

    Courts have to deal with it now and we can only hope, for the child’s sake, that they deal with it properly.

    Sorry for the rambling rant, after 21 years of dealing with this stuff, it is still not easy.

    R

  9. #9 Denice Walter
    March 26, 2012

    Although I certainly couldn’t *prove* it, I get the uncomfortable feeling that woo-meisters like those I survey influence the public in two ways:
    to inspire fear and mistrust the medical establishment and
    to incite belief that alternative methods work.

    Obviously you can’t trace it directly but years and years of spurious articles and amped-up fear mongering take their toll:
    a portion of the public doesn’t trust experts’ opinions and would rather take their lives- or their children’s- into their own hands than submit to the ministrations of professionals.

    I believe a certain group is targetted by Mike et al: those who already have an axe to grind against the establishment, medical or otherwise. I think he speaks to a movement of dis-satified people who reject ‘elitism’ and corporate power: oddly though, he owns several companies despite his plain-folks, chicken-raising posturings. He and the other idiot display political ambitions as well as they forecast economic and social disasters: seems that the western world is composed of police states, rapidly on the road to ruination( in fact, the other day, radio woo featured a trendcaster who told listeners that he was invested entirely in gold and silver and they should probably do the same. This itself is frightening).

    I cannot fathom how followers do not see that these tactics are merely techniques to inspire loyalty that will hopefully lead to purchasing products or services while feeding ravenous egos.

    -btw- Lisa Goes @ Thinking Moms’ Revolution also pulls out the N–i card: autism is a H-l-caust.

  10. #10 Ken (though not the one at 6)
    March 26, 2012

    she and her husband decided to end chemotherapy treatments after two PET scans showed no signs of cancer

    Can cancer develop chemo resistance? Because it’s exactly the above logic that produces antibiotic resistance in bacteria; “I took the pills for three days and felt better, so I stopped.”

  11. #11 Chris
    March 26, 2012

    Ken, yes, cancer can develop chemo resistance. It was discussed in the book Emperor of All Maladies.

  12. #12 kruuth
    March 26, 2012

    Last I read Abraham Cherrix’ lump had gotten bigger. What ever happened to him?

  13. #13 Politicalguineapig
    March 26, 2012

    I’m pretty sure that Bayer predates IG Farben. I was poking around in pre 1920s medical journals for a project, and I came across a load of Bayer ads, none of which mentioned IG Farben. There are other reasons to pick apart Adam’s argument, but that stands out to me.

  14. #14 Marc Stephens Is Insane
    March 26, 2012

    Re: Bayer

    You are correct: IG Farben was founded in 1925 as a merger of Bayer and other companies (BASF, Agfa, Hoechst, etc.)

  15. #15 lilady
    March 26, 2012

    It is interesting that the State’s role in pursuing a court decision to have Jacob complete therapy for treatment of his spinal Ewing sarcoma tumor, is supposedly due to the *evils* of “Obamacare”. I seem to recall, many cases, similar to this, where other doctors have notified Child Protective Services about instances of parental medical neglect, long before the Patient Protection and Affordable Care Act was enacted, that have been brought to the Court’s attention.

    Here is an **article about the results, “OS” (overall survival) when treatment is completed with surgery, radiation and first line chemotherapy drugs. Overall survival is reported as “upwards of 70 %”.

    http://www.hindawi.com/journals/srcm/2011/863210/

    Reading the article, I see that the time of a recurrence of Ewing Sarcoma (under 10 % for early recurrence and over 25 % for recurrence after 2 years of completing initial treatment), has a profound impact on the overall survival rate, as well.

    The parents here are playing a dangerous game to the detriment of their child. And, the doctors, Child Protective Services and the Courts have every right to intervene.

    **Note the article was published in the “Sarcoma Medical Journal”, which edges out any self-styled cancer expert or any self-styled medicine journalist, writing for a crank right-wing media outlet.

  16. #16 kruuth
    March 26, 2012

    Interestingly enough there’s another good Cracked article, this time about all the parenting woo out there.

  17. #17 dean
    March 26, 2012

    The latest I’ve found in any of our Michigan sources is here:

    http://www.uppermichiganssource.com/news/story.aspx?list=~%5Cnews%5Clists%5Crecent&id=729390#.T3DIzuxWqfE

    from earlier in March. The brief article ends with the comment that scans in January still showed him cancer-free, but refer only to the parents. The comments are what I’d expect: our northern MI area is quite conservative. I have not seen any recent updates from the Grand Rapids news sources.

  18. #18 herr doktor bimler
    March 26, 2012

    some of the drugs come from companies that were once part of IG Farben, they might as well have been produced by Nazis.

    Once I worked in the printing industry, using Agfa-Gevaert pre-print films and equipment every day… does that make me a Quisling? OH NOES.

  19. #19 Phoenix Woman
    March 26, 2012

    K ruuth @ 11: He’s still alive, still pretending the chemotherapy isn’t what kept him alive, but suddenly confronted with cold hard reality:

    http://scienceblogs.com/insolence/2011/09/abraham_cherrix_still_battling_hodgkins.php

  20. #20 Matt F
    March 26, 2012

    @lilady
    You’re right this predates the healthcare reform. The book The spirt that catches you and you fall down, is about the a Hmong family and the there clash with American medicine. I hated the book but there is point in the book that CPS takes the child because the parents were not giving the daughter the epilepsy medicine. That was in the 80′s. Parents who believe in christian science also have been prosecuted for not giving their child medicine when needed. I think there is some law that says you can’t deny, or that the state can step in and order you to, medical procedure that has the potentiall to save a your child life in California, vaccines not included. I am not sure though so I could be wrong.

  21. #21 JustaTech
    March 26, 2012

    Good grief. Pediatric oncologist=Nazi? Seriously, the dream I had last week where I got into a screaming match with Hitler over the price of a coffee soda (it was &0.11, but then he was mad I didn’t have any deuchmarks, or something) made more sense than the vicious lies Mike Adams pushes.

    Sometimes getting better hurts, ask anyone who’s done physical therapy. I wish this kid all the best, but man are his parents dangerously optimistic.

  22. #22 herr doktor bimler
    March 26, 2012
  23. #23 lilady
    March 26, 2012

    @ Matt F.: Here is an interesting article about State statutes dealing with parental medical neglect:

    http://childrenshealthcare.org/?page_id=24

    Most of the case law is about medical providers who have reported cases of parental medical neglect to Child Protective Service, for failure to follow-through with treatment for life-threatening diseases. Many, if not all States, require “mandatory reporters” (doctors, nurses, psychologists, teachers and other licensed professionals), to report suspect cases of medical neglect or abuse.

    Preventive vaccines seem to be a “gray area”…except perhaps…if a parent refuses to complete the hepatitis B vaccine series, if the child was exposed at birth to his/her mother who is a chronic hepatitis B carrier.

  24. #24 Doug
    March 26, 2012

    8 years ago, in 2004, my son was diagnosed with leukemia (ALL). Three and a half years of chemotherapy saved his life. For the last 3 years or so of that, you could not have found a leukemic cell in his blood if you tried — but trial and error has proven over the decades that 3 1/2 years was the amount necessary to have the greatest chance of killing every last leukemic cell in the bone marrow. Because if every last cell were not killed — they would just start replicating again and again and again, and he would relapse.

    Then again, maybe it was the bananas that saved him.

  25. #25 Matt F
    March 26, 2012

    Thank you lilady that sheds a little more light on it.

  26. #26 lilady
    March 26, 2012

    Here from the “What’s The Harm” website, are a series of cases which show the possible dangers of a vegan diet (lacking in essential vitamins, nutrients), during pregnancy and, the lethal effects of a vegan diet for an infant:

    http://whatstheharm.net/childvegetarianism.html

    Here, again from the “What’s The Harm” website, are cases of kids not getting proper medical care…and dying of diseases…due to their parents belief system…tied into various religious sects, alternative and CAM medicine and plain ignorance.

    http://whatstheharm.net/children.html

  27. #27 palindrom
    March 26, 2012

    Doug @24 — I’m very glad to hear about your son!

    Maybe it was all that radioactive Potassium-40 in the bananas that killed the last cancer cells.

    (I’m kidding. But I’m not kidding about being happy your son is OK.)

  28. #28 meg
    March 26, 2012

    Another case from here in Oz a few years back – how these parents let their child get to this stage, I just don’t know.

    http://www.smh.com.au/national/baby-glorias-third-world-deficiency-20090515-b5hu.html

    http://news.smh.com.au/breaking-news-national/mum-homeopath-accused-over-babys-death-20090504-asi9.html

    I have to agree with Lawrence and pretty much everyone else – how do you not do absolutely everything to make sure your child is well? How the parents above let their child get to the point where she was displaying third-world malnutrition, I just cannot fathom.

  29. #29 Politicalguineapig
    March 26, 2012

    Marc Stephens is insane: Thanks for the information. I knew the two were connected somehow, but I didn’t know for sure.

    Matt: I read that book. It wasn’t remotely as simple as that: the parents did give their daughter medicine occasionally, but due to illiteracy and cultural differences they tended to be inconsistent and either gave her too much or too little. Out of curiousity, why didn’t you like it?
    There was a case in my home state, Minnesota, where the family had a son with leukemia, and the mother fled the state with him. I believe he’s in remission now. Good god, was that family a study in awfulness. There’s no excuse for a white teenager from a stable background to be illiterate.

  30. #30 Antaeus Feldspar
    March 26, 2012

    So, he’s arguing that because some of the drugs come from companies that were once part of IG Farben, they might as well have been produced by Nazis.

    I’ll have to check my files, but this may be the single stupidest argument I have ever heard.

    Ah, then you must have missed his argument about the caduceus.

  31. #31 lilady
    March 26, 2012

    @ Doug: We are delighted that your son survived ALL…with the excellent care he received from his doctors. Here, at the risk of touting St. Judes Children’s Research Hospital, is an article about their care of children…no matter what their medical insurance is and, no matter what the parental financial resources are:

    http://www.stjude.org/stjude/v/index.jsp?vgnextoid=0d932066d5e70110VgnVCM1000001e0215acRCRD&vgnextchannel=7cd7ecf652abe210VgnVCM1000001e0215acRCRD

  32. #32 dedicated lurker
    March 26, 2012

    the parents did give their daughter medicine occasionally, but due to illiteracy and cultural differences they tended to be inconsistent and either gave her too much or too little

    She also didn’t have simple epilepsy – it was a rare condition that was difficult to control with any medication. Even at the point they consistantly gave her Depakane, she was still seizing. She apparently suffered nasty side effects when she took phenobarbital, according to her foster mother. It was a sad case, but it wasn’t a simple one by any means. At least it’s not straightforward refusal of medicine.

  33. #33 prn
    March 26, 2012

    Orac expends too much effort on “P2P”, polemic to polemic, with Mikey here, and the dr/hospitals’ “STFU” agenda (“…Google University”), neglecting useful detail. The hospital, claimed to have a $60,000 per month conflict of interest, apparently is a driving force for interference here. The parents are in effect claiming they did their job, the kid was dosed to MTD and life threatening side effects. Side effects partly cumulative like heart failure risks even beyond adult risks with doxorubicin.

    It would be more useful if Orac mentioned, or discussed, statistics of number of treatment cycles vs 5 yr PFS, OS, and perhaps complete responses. This is a non-trivial balancing of benefit and harm case for the individual as well as parental rights, where those particular drugs have seriously life threatening and life changing side effects. No telling how many conflicting medical opinions and errors the parents have already been through, too.

    Applying State force to loosely derived (not even specifically FDA approved uses), shifting “standard of care” with highly toxic drugs like “red death” and mustard agents beyond their FDA registration does sound like over reaching, intrusive government in a state that should have other spending priorities.

    It might be more useful to have the parents present their experts and a coherent plan of maintenance or follow up, even if experimental or unproven in nature. Katie W’s dad dug deeper for such a challenge, did his homework, and was perhaps closer to accurate predictive assessment and individual optimum than Orac, at least in the short and intermediate terms, so far. e.g. Thursday, November 03, 2005 Insolence, “Mourn for Katie Wernecke…because it looks like she’s doomed.”

    Reasonable people might look for a less toxic maintenance regime, perhaps with molecular targets, less toxic substitutions, or immune therapies. It is too bad these parents have their precious time and money diverted by 3rd party legal entanglements, away from providing the best treatment options they can research and identify.

  34. #34 Lancelot Link
    March 26, 2012

    some of the drugs come from companies that were once part of IG Farben, they might as well have been produced by Nazis.
    In reality, however, the Nazis were apparently much more interested in homeopathy than “Jewified” conventional medicine.

  35. #35 Denice Walter
    March 26, 2012

    About those N–i references:

    A long time ago, I read from a symposium on conflict and aggression from a university: an important topic was de-humanisation of the enemy – doesn’t that sound familiar!
    If you follow effluvia from Mssrs Adams, Null or Crosby, you might surmise that SBM physicians and supporters are an entire consortium of demons, succubi and dragons perhaps- certainly to blame for most of the woe on the planet rather than actual flesh-and-blood people many of whom work in the helping professions. So why’s this?

    If you feel responsible for your own problems -or your child’s- it can be convenient to cast the blame outside yourself: you had the child vaccinated, he has autism- if you buy AJW’s story- rather than suffer guilt, it becomes the doctor’s and pharma’s fault. Similarly, if you buy into the woo-meme of cancer being caused by what you eat and you are diagnosed, it must be doctors’, the goverment’s or a corporation’s fault for lying to you about diet and selling carcinogens. These bizarre un-realistic theories lend themselves to victim blaming and finger-pointing.

    If you see your opponent as something less than human and guilty of myriad crimes, it’s easy to justify your own aggression and anger-fuelled screeching. We’ve often heard commenters hurling invective at us for being partners in crime with pharma- things like this are easy to say if you believe you’re speaking to the devil. Woo-providers keep up this facade in order to keep followers from looking into their leaders’ own lack of morals or listening to our advice.

    If our critics listened to us more closely, they might be surprised that we aren’t exactly as they’ve been led to believe: actually, many of us are here because we believe that pseudo-science victimises and abuses people.

  36. #36 flip
    March 26, 2012

    Can someone explain to me the legal basis/logic for requiring doctors, etc to report parents for not following through on treatments vs no requirements (in fact, having exceptions) to report the refusal of vaccines?

  37. #37 lilady
    March 27, 2012

    @ flip: Here is the actual State of Michigan guidelines for reporting child neglect, medical neglect and abuse…with specific emphasis on “mandatory reporters”…and the penalties “mandatory reporters” might face, if they failed to report suspected cases of neglect or abuse:

    http://www.michigan.gov/documents/dhs/Pub-112_179456_7.pdf

    You will see the issue of “medical neglect” on Page 6 of the guideline manual.

    See also my posting # 23 above (last paragraph) about parental refusal to complete a post exposure hepatitis B vaccine series. Upon “reflection”, I would also opine that a parent who refuses HRIG and/or rabies vaccine for a child, who was bitten by a possibly rabid animal, constitutes “medical neglect”

  38. #38 lilady
    March 27, 2012

    I’ve discovered the Michigan State Law Review online, with this article (March, 2012):

    http://www.michiganlawreview.org/articles/challenging-personal-belief-immunization-exemptions-considering-legal-responses

    I’ve “bookmarked” the Law Review, because there are many articles about health law and decisions.

  39. #39 Matt F
    March 27, 2012

    Sorry it’s been a long time since I’ve read the book. Though not a straight and simple case, it a example of the state stepping in. I apologize for the errors in remembering the details of the case.

  40. #40 Politicalguineapig
    March 27, 2012

    Dedicated lurker: Mea culpa, I’d forgotten that too. Yeah, the kid was on a very complex regime, and she built up a tolerance against the medicine. That coupled with the cultural barriers turned it into hell on earth for all concerned.

    Flip: I think it’s a matter of immediate harm vs. prospective harm. For example, vaccines are required because of the prospect of epidemics, but there isn’t usually an immediate harm to the child. However with cancer, the clock starts ticking as soon as the diagnosis is in. Denying treatment to a minor will cause immediate harm.

  41. #41 anarchic teapot
    March 27, 2012

    “As far as Mike Adams – there is a special place in hell for people like him.”
    If Hell exists, he is almost certainly a high-ranking member of its labyrinthine bureaucracy.

  42. #42 Michael Hughes
    March 27, 2012

    I wish I hadn’t clicked on the what’s the harm link from lilady. Makes me want to cry.

  43. #43 missmayinga
    March 27, 2012

    In fact, some of the chemicals come from the very same sources — drug companies that were once part of IG Farben, the Nazi war crimes chemical conglomerate that was found guilty of crimes against humanity. Today’s Bayer company is an offshoot of IG Farben, in fact, and the former chairperson of Bayer, Fritz ter Meer, was found guilty of war crimes in the Nuremberg trials.

    Mein gott, it’s Six Degrees of Nazis.

  44. #44 Old Rockin' Dave
    March 27, 2012

    My granduncle told me of a time when distrust for Bayer may have cost lives: the influenza epidemic of 1918-1921. He was a pharmacist then. Aspirin was then a trademark of Bayer and was just about the only antipyretic (fever reducing) drug available. The epidemic coming on the heels of World War I, and the known and rumored biological warfare conducted by Germany in the war, caused widespread and serious distrust of Bayer. He attributed numerous deaths from fever to that fear.

  45. #45 Pieter B, FCD
    March 27, 2012

    I didn’t click through to check, but if Mike Ad_ms didn’t bring up the fact that Heroin was a Bayer trademark he missed an opening for further well-poisoning.

  46. #46 jane
    March 27, 2012

    Denice Walter: “an important topic was de-humanisation of the enemy… If you follow effluvia from Mssrs Adams, Null or Crosby, you might surmise that SBM physicians and supporters are an entire consortium of demons…”

    anarchic teapot: “If Hell exists, [Mike Adams] is almost certainly a high-ranking member of its labyrinthine bureaucracy.”

    The latter poster might have been wise to let a little more space build up between those two posts. Just sayin’.

  47. #47 prn
    March 27, 2012

    Let’s not kid ourselves to what degree elements of Mike Adams’ title are true:
    Medical terrorism – the most arguable point, a doctor appears to campaign, suborn judges and public officials, coercively interfere based on statistical arguments from one line of unproven (FDA?) evolving treatments
    in Michigan – simple fact
    Parents forced by the state – parents are under threats and great pressure from the state, check
    to poison their child – simple fact
    with cancer-causing chemicals. – simple fact, but other potentially lethal or permanent, life changing side effects are nearer term

  48. #48 Matt F
    March 27, 2012

    @prn
    prn it would be poison if the child did not have cancer. If you knew anything about cancer then you would know that cancer is uncontrolled cell division. Cancer is basically just normal body cells that divided uncontrollably. Orac has explained it before the point chemo works better on fast growing cancer because chemotherapy drugs target the faster reproducing cells better than the normal body cells. This is the very reason why cancer can be so hard to treat. If doubt that just look at how cancer survival rates have improved in the past.
    As for the parents being forced by the state. There are precedent that the a adult can not withhold potentially life saving treatment to a minor child. It all depends on what the courts rule. This why there has been christian scientists prosecuted for withholding medical treatment

  49. #49 prn
    March 27, 2012

    While it is stipulated that the chemo is done with therapeutic intent, with the hope of net benefit, these are some pretty nasty chemicals. The point is that, hopefully, damage to the cancer cells exceeds the damage to rest of the patient.

    There is a substantial amount of individual variation. Sometimes with highly adverse side effects come durable complete responses on the first treatment, rendering all additional treatments a negative utility. Sometimes patients simply die from a single treatment of chemo.

    The doctor suborning judges and public officials apparently represented herself as a treating physcian without ever having seen the patient or parents. In some places, doctors have been prosecuted for this.

  50. #50 Shay
    March 27, 2012

    How fortunate for my brother (and others like him) that my parents opted to poison him with those despicable chemicals. It’s why he’s alive and well, forty-five years after the initial cancer diagnosis.

  51. #51 prn
    March 27, 2012

    I detect some emotional wrestling here with the word, poison. Objective readers should be able to accept the fact with the merest caveat against unlettered prejudices.

    One of the issues between “regular medicine” and CAM in the experimental, biological arena, is whether less toxic and/or more effective treatments exist and are physically available, even if less well tested or documented. Some of the differences to be examined are akin to moving from arsenicals to penecillin for earlier dread diseases.

  52. #52 flip
    March 27, 2012

    Thanks to Lilady and especially Politicalguineapig: prospective and immediate harm makes sense, thanks for pointing that out. Simple, obvious, and yet it never occurred to me.

  53. #53 Shay
    March 27, 2012

    Sometimes patients simply die from a single treatment of chemo.

    Would be interested in your source for this statement.

  54. #54 Composer99
    March 27, 2012

    Jacob Steiler, and other children in his circumstances, aren’t just extensions of their parents’ wills, to have their fates subject to parental whims and whimsies.

    At any rate, channeling Altemeyer, I suspect that authoritarians such as those at WND & Mike Adams, and the kinds of parenting they propound, are far more likely to legitimate and apologize for authoritarian government activity, than anyone who appeals to impartial, empirically-derived evidence as a basis for both parenting and policy.

  55. #55 Politicalguineapig
    March 27, 2012

    Flip: You’re welcome. I’m honored to be included with lilady. I don’t usually speak up very often around here; I’m not an expert on anything, just another rider on the information highway. This stuff makes me really sad. kids shouldn’t be stuck in hospital beds, but the alternative is worse.

  56. #56 prn
    March 28, 2012

    shay@53
    A well known oncology example is 5-fluorouracil treatments coincident with complete DPD inhibition, including genetic varieties. Initial 5FU treatments typically killed or severely injured some fraction of 1% of 5FU patients right off the bat until recently.

    Occasionally this phenomenon also cured 5FU-DPD victims of their cancer.

  57. #57 lilady
    March 28, 2012

    @ flip: *Some* parents think they can *experiment* with their child’s health, by adopting alternative treatments, by feeding their infants a vegan diet and what ever *new theories* of child health that they read about on the internet.

    I’d like to think that any person who is not a “mandatory reporter”, and who perceives a case of suspect neglect or abuse would pick up the phone, and call the Child Abuse and Neglect Hotline:

    http://www.childhelp.org/pages/hotline-home

    Unfortunately, I read of cases where family members, friends and neighbors were aware that *something* was terribly amiss…but they were reluctant to butt in, or didn’t want to *get involved*.

    @ Politicalguineapig: I’m blushing now and, thank you.

  58. #58 adelady
    March 28, 2012

    This is a non-trivial balancing of benefit and harm case for the individual as well as parental rights …

    If we’re talking individual rather than general, let’s bear in mind that this individual cancer is in. the. spine.

    I would have expected that 30+ years ago, if the cancer were detected at all, oncologists would simply have offered the options of
    1)surgery resulting in paraplegia and some follow-up therapy, or,
    2) avoid the paraplegia with dreadful blasts of optimistic radio/chemo followed by palliative care before death.

    These parents aren’t just dicing with death. If they’re really ‘lucky’, when his cancer returns it will still be in the single place it started rather than metastasized. What kind of spinal surgery outcomes will be available to him then?

    I know these things are horrible for parents as well as for the children, but surely they’d do whatever it takes to avoid the worse and worst outcomes. I would. It’d break my heart to see him suffer, but I’d get it done anyway.

    A year or two of heartache and pity and frustration is a smaller price to pay than a lifetime of grief and guilt.

  59. #59 prn
    March 28, 2012

    Some of the problem I’m having with this storyline is its statistical, nonclinically based presumptions:
    - what if the boy has had a “true” complete response, already with eradicated cells. There seems to be little effort to further evaluate the biomarker/microscopic situation with extended testing, and earlier warning.
    - what if mom is more correct, boy was chemo sick closer to death, the media make her appear to as a denialist, wimpy, or a seeming hypochondriac type whiner. Media bias and incompetence can be formidable in any controversy with technical considerations.
    - there appeared to be some doubt on precise diagnosis, perhaps a less virulent version that the body might control.
    - although I have my own doubts, what if mom has done enough homework and fit-to-individual to have adopted a competitive protocol with less side effects.

    All the while, realizing that some of the odds include that the doctors’ pessimism pans out, unlike Katie W.

  60. #60 sisu
    March 28, 2012

    Agreed with adelady@58.

    Before reading my comment, I should disclose that I am not a physician or an oncologist. However, I am someone who has advanced degrees in radiation science and who has watched a relative go through chemo and radiation.

    I think that part of problem is wanting results instantly, but it’s also a huge problem that there is a general lack of knowledge about medical science among most people. The physicians and oncologists are required to inform patients of all possible risks and side effects of chemo and radiation therapy, and some of those can sound horribly nasty. The word “radiation” itself conjures negativity, and it is well known that chemotherapy can make people very very sick. If you don’t know much about something, it can be scary and intimidating. Yes, the drugs and chemicals used in the therapy are nasty, but they have to be in order to kill the cancer cells. As I write this, researchers are busting their humps trying to figure out ways to kill cancer cells without such awful side effects.

    However much you may not want to see your child or loved one go through the pain and side effects of treatment, you should want them to have the best chances of beating the cancer and surviving. What is the best/most documented way of doing this? Well, it depends on the specific form of cancer, but it’s usually some form of chemo/radiation. Oncologists are EXPERTS in their field. Not only are they doctors but they have to go through years and years of training to be able to do what they do, not to mention the Hippocratic oath. Like someone above said, oncologists (esp. pedi oncologists) don’t make boatloads of money, and they have a very difficult job. With all the malpractice issues, why would they risk telling their patient to get a treatment they don’t need, taking unnecessary risks?
    I can understand that some people have been given poor advice from a doctor or have some issue with the medical system, causing them to be weary. But this is not something simple. If you don’t trust the doctor, get a second or even third opinion. But, something has to be done to start treating that cancer as soon as possible, before it gets worse.

    As far as “poison” goes, that term is relative. For example, you could be eating a PBJ sandwich while reading this, nourishing your body. If I ate that same PBJ sandwich, I wouldn’t make it past one bite before my body went into anaphylactic shock, since peanuts are poison to me. If you give someone who does not have cancer the chemo drugs, then yes it’s definitely poisonous to them. But, if that’s the best way to kill their cancer, why wouldn’t you want to use them? This whole issue is about education, calculated risks and benefits, and reality.

  61. #61 prn
    March 28, 2012

    chemicals used in the therapy are nasty, but they have to be in order to kill the cancer cells.
    This is a central area of hot dispute with biologically based CAM that includes current generic materials and nutrients. The immuno- and natural molecular target therapies are typically not nasty, in fact often the opposite. How to test and target is probably the biggest area for future research and education.

    The other problem I’ve seen is that doctors may not believe a complete response or necrosis when they see one, even up close and personal, if it doesn’t fit their expectations of cause (due to apparent lack of [neoadjuvant chemo] cause, they can just shut down).

    researchers are busting their humps trying to figure out ways to kill cancer cells without such awful side effects.
    paid researchers that have to pursue novel, patentable solutions, preferably not exactly duplicable by independent original means e.g. antibodies.
    —-
    Oncologists are still generalists, instead of hyperspecialists on a particular problem. Examined closely, the gaps left unquestioned in clinical education, are sometimes jaw droppingly big, where clear answers in favor of the patient are in the literature, and forgotten.

    The oncologists I’ve seen have done quite well, including money for boats. Perhaps they are at the top of their phood chain.

  62. #62 T.O.M.
    March 28, 2012

    prn @61: “biologically based CAM”

    Surely you are kidding right? (probably not)
    That’s just the Natural fallacy all over again, but I’ll humour you, please list all of the names of specific professions and therapies in sCAM that are “biologically based”. Please include citations of evidence that those that you list actually have anything to do with biology (physiology preferred).

  63. #63 sophia8
    March 28, 2012

    prn@61:

    The oncologists I’ve seen have done quite well, including money for boats.

    OK, so just who are these oncologists? Since you obviously know them well enough to tell us about their lifestyles, let’s have some naming and shaming!

  64. #64 Antaeus Feldspar
    March 28, 2012
    researchers are busting their humps trying to figure out ways to kill cancer cells without such awful side effects.

    paid researchers that have to pursue novel, patentable solutions, preferably not exactly duplicable by independent original means e.g. antibodies.

    So, in prn’s fantasy world, if a researcher said and had the evidence to make the claim credible “Hey, I think I’ve figured out a way to kill cancer cells with minimal damage to healthy cells, and if developed into a technology, it wouldn’t even require anyone to be paid for a patent,” that researcher would be unable to find anyone to support their research? ‘Cause there’s no one in the world whose vested interests would actually benefit from curing a major killer disease at low cost (*cough*insurancecompanies*cough*)?

    You put up a better show of rationality than many others do, prn, I’ll give you that, but quite often you still betray the fact that you start at the conclusion you want and work your way back to figure out the premises you’ll accept as true.

  65. #65 lilady
    March 28, 2012

    That’s a *boatload* of *what ifs?*…even from prn…our *resident* alternative cancer treatment expert.

    The more likely scenario is that:

    The parents were told from the onset, that there would be an extended course of treatment, if and when the child showed no evidence on body scans, that preliminary treatment showed no evidence of the tumor.

    “Remission” was explained to them, but they didn’t understand…or chose now to deny, that “remission” means just that…and, not “cure”.

    The parents have not consulted with any other pediatric oncologists about their opinions, for stopping…or continuing treatment to achieve permanent remission and cure.

    The parents have no science backgrounds and do not wish to be informed, once they made the decision to end treatment abruptly.

    The parents have chosen for the less painful, less inconvenient *treatment* (no treatment at all), due to their lack of a science and ignorance-of-the-facts stubborn attitudes.

    The *only* certainty here, is that prn will offer up her *expertise* on every cancer treatment based on *alternative/CAM* treatments that prn has *investigated* on the internet.

    BTW prn, your statement “forced by the state”, shows an even greater ignorance of the law, than your ignorance of oncology and your hatred of oncologists. Way to go, prn!

  66. #66 Shay
    March 28, 2012

    prn@56 — I was able to locate two documents reporting negative outcomes for, as you stated, a very small # of patients related to use of F5U; but nothing to indicate that they died or suffered serious harm after only one treatment. Do you have a reference you can point me to?

    I did find a citation of a 2007 study on the American Society of Clinical Oncology site that is a bit more optimistic than you are about the survival rate of colon cancer patients using this therapy.

  67. #67 Vicki
    March 28, 2012

    prn @33:

    This is Orac’s blog. If you want a discussion of statistics on treatment cycles, do the research and write one, or hire a doctor or a statistician to do it for you.

    I have in fact emailed him recently suggesting that he might be interested in an article I’d seen. But the key points here are “emailed” and “suggested”: I didn’t come over here and tell the whole world that I thought his time would be better spent writing about that than about the topic he’d selected.

  68. #68 LW
    March 28, 2012

    Quoth prn: “The doctor suborning judges and public officials apparently represented herself as a treating physcian without ever having seen the patient or parents.”

    Of course prn, who *also* has never seen the patient or parents, hasn’t attended medical school, has never treated patients, and doesn’t have to worry about malpractice suits, feels free to libel the doctor in question, because prn’s University of Google degree trumps all!

  69. #69 Composer99
    March 28, 2012

    Examined closely, the gaps left unquestioned in clinical education, are sometimes jaw droppingly big, where clear answers in favor of the patient are in the literature, and forgotten.

    {Citations required}

  70. #70 JustaTech
    March 28, 2012

    Prn @61:”This is a central area of hot dispute with biologically based CAM that includes current generic materials and nutrients. The immuno- and natural molecular target therapies are typically not nasty, in fact often the opposite. ”

    As a person who works on cancer immunotherapy, I respectfully ask that you never again equate the good, solid science behind immunotherapy with CAM. It’s not “nutrients” and it sure as hell is not CAM!

    Immunology is science, hard science, not some namby-pamby flower-waving crystal bullshit. Gah, you’re as bad as the insane-troll-who-must-not-be-named.

  71. #71 prn
    March 28, 2012

    Justatech@70
    Immune modulation for cancer treatment comes in many flavors. CAM doesn’t have a great generally agreed definition, some CAM branches’ materials and methods derive from forgotten, controversial, early, and competitively deprecated science.

    Three immune modulating treatment areas outside regular medicine (“CAM”) that I often refer to are: biomarker targeted cimetidine for GI cancers, especially colorectal cancer; beta glucans; and supraRDA amounts of vitamin D3 (vit D3 is definitely a nutrient).

    As a person who works on cancer immunotherapy, I respectfully ask that you never again… Thanks for clarifying your conflict of interests. I’m a little wary of the commercial and adversarial denunciations here.

  72. #72 lilady
    March 28, 2012

    “Thanks for clarifying your conflict of interests. I’m a little wary of the commercial and adversarial denunciations here.”

    We are more than a little wary…and more than a little weary …of your *expertise* and your adversarial denunciations here.

    -FTFY Troll

  73. #73 prn
    March 28, 2012

    Composer99
    I am not here to post 95 theses (too lengthy). Basically, I disagree with doctors who blythely repeat their treatment failures under “standard of care” without addressing these failures in a timely, analytical manner. Where I have results by scrutinizing the literature, and they don’t. Some other doctors even ask me how I achieve some results. Some of these technologies I’ve referred to and referenced previously, others not.

  74. #74 LW
    March 28, 2012

    So, prn, how many patients have treated? What were original diagnoses? What objective criteria of outcomes do you have in each case? Do you carry malpractice insurance?

  75. #75 prn
    March 28, 2012

    LW@68
    Re: “The doctor suborning judges and public officials apparently represented herself as a treating physcian without ever having seen the patient or parents.”
    The mother pretty emphatically describes all this. No “degree” needed.

  76. #76 prn
    March 28, 2012

    vicki@67
    Some might recognize constructive criticism as well as editorial counterpoints. Orac, got an opinion?

  77. #77 LW
    March 28, 2012

    Ah, so prn has no degree, but nevertheless feels free to pronounce on the proper treatment of a patient that prn has never seen, and also feels free to libel a physician by claiming that the physician “suborned judges and public officials”. Fortunately — for prn — prn comments anonymously. Accusing someone of suborning judges and public officials, with no evidence for that statement, is very likely actionable.

  78. #78 Lawrence
    March 28, 2012

    @LW – wasn’t prn the one on the verge of awarding himself multiple PhD’s based on his own reading?

  79. #79 Denice Walter
    March 28, 2012

    By way of analogy:

    ( True and not a client): a guy has problems with depression-dysthymia, minor anxiety, since he was 16 or so. Despite his condition, he managed getting a
    first-rate education and has been successful in business: he’s very intelligent and works hard. However, he believes he knows better than doctors and psychologists *therefore* he hasn’t followed advice ( to take meds) unless if he *likes* them ( anti-anxiotics) and only intermittently takes SSRIs ( in the past, tricyclics) *rather* than taking them regularly ( they need time to ‘build up’). He also likes expensive whiskey. He thus self-medicates and doctor shops. He’s been doing this since getting his degree in the late 1970s. Never been in any trouble or low on cash. He’s otherwise healthy. And looks fabulous.

    So what’s the harm? Well, he’s never been really well: he doesn’t give the meds a chance- he tosses them- due to “side effects”. He does what feels good at the time and makes up the rest with alcohol ( only on weekends). He relies upon his career to get him going- he makes great effort to continue. He doesn’t really enjoy himself. I believe that with the correct meds- which would take time, effort, co-operation with a physician, he would most likely, find an anti-depressant that would work better than his current regime.
    But it’s not for him. I think *needing* something works against his self-esteem and makes him feel dependent- altho’ he uses the other meds and alcohol. Perhaps the anti-depressants put him in a category he doesn’t accept- that’s the real side effect.

    You can’t be an expert on everything: you may need to trust others’ expertise. Sometimes people resist help because it makes them feel weak when they are already down, they don’t want to surrender even more power.

  80. #80 prn
    March 28, 2012

    TOM@62
    prn @61: “biologically based CAM” Surely you are kidding right? (probably not) That’s just the Natural fallacy all over again
    Not all alternative medicine is even natural. I happen to favor alternative mCRC treatments that include nonnatural substances, not supported by ASCO or AMA for colorectal cancer (e.g. cimetidine), or even illegal to sell in the US (e.g. UFT). If you google “prn” and “insolence” you’ll find I’ve PMID’d several substances previously.

    sofia@63
    I am more critical of the system than individuals, although I’ve been plenty annoyed with some individuals.

    anteneaus F@64
    So,…if a researcher said… “Hey, I think I’ve figured out a way to kill cancer cells with minimal damage to healthy cells, and if developed into a technology, it wouldn’t even require anyone to be paid for a patent,” that researcher would be unable to find anyone to support their research? ‘Cause there’s no one in the world whose vested interests would actually benefit from curing a major killer disease at low cost (*cough* insurance companies*cough*)?
    Can’t say I’ve observed insurance companies fund that much cancer reserarch, not to say that I am in either industry. Probably some guy dead 30+ years that I’ve crossed tracks with several times over the last decade or so, provides more basic research money.

    You put up a better show of rationality than many others do, prn, I’ll give you that, but quite often you still betray the fact that you start at the conclusion you want and work your way back to figure out the premises you’ll accept as true.
    If I work something backwards, it is to find out what I need to be able to measure, or to look for. Standard search techniques, including novel discovery. Your inference of persistently fixed biases may reflect your own.

    LL@65
    *Your speculations* served as a nice big steaming pile. You could be partly right, I have suggested possibilities why intelligent, informed, or reasonable parents might act similarly to these parents. One doctor apparently made note, “the mom has done her homework.”

    …than your ignorance of oncology and your hatred of oncologists
    Not hatred, LL. Lack of respect for lack of performance with ignorant, snotty attitudes when they don’t even know, or blatantly ignore, their own literature about significant opportunities and hazards.

    Shay@66
    Medical authors and publishers have been fairly coy about how many died from 5FU toxicity upfront. It took me over a month to come across 5FU mortality estimates of 0.3%-2%.

    Here’s one family survivor’s website about underacknowledgement of 5FU lethality:
    w w w.dpd-deficiency.com

    “The efficacy of 5-FU chemotherapy increases with dose escalation, as does the likelihood of adverse events…. the mortality rate is about 0.5% “. Blue Cross Blue Shield, 2010 (on page 5)
    w w w.bcbs.com/blueresources/tec/vols/24/24_13.pdf

    “Mayo Clinic [5FU-LV] regimen…2% treatment-related deaths…Most episodes of severe toxicity (56%) and toxic deaths (4/5) were observed after the first cycle” (PMID: 12576935).

    Here’s a highly lethal 5FU drug interaction – PMID: 9690942.

  81. #81 Composer99
    March 28, 2012

    Where I have results by scrutinizing the literature, and they don’t.

    And if you’re not sharing that literature, then you’re spouting BS.

    You don’t have to go making a case in the comments on Respectful Insolence. Publish a few articles in the medical literature and then share them here (on a topical thread).

    Go ahead. I can’t speak for others but I won’t be holding my breath.

  82. #82 prn
    March 28, 2012

    Composer99@81
    Remember, an individual’s story even with documentation is likely to be classified as an anecdote. I do produce a substantial number of references. I am not your paid tutor, however much it may be needed.

  83. #83 Denice Walter
    March 28, 2012

    @ prn:

    Are you familiar with Paul Stamets and Fungi.com?
    Source of medicinal mushrooms and lit.

  84. #84 LW
    March 28, 2012

    So, prn, how many patients have you treated? What were the original diagnoses? What objective criteria of outcomes do you have in each case? Do you carry malpractice insurance?

  85. #85 lilady
    March 29, 2012

    prn claims to be a cancer survivor, who has tried to convince us that her alternative treatments are responsible for her continued survival.

    prn also thinks she is an *expert* about all types of cancer and all types of treatment for said cancers. Meanwhile, prn has no medical degree, wants us to believe that her *research* on the internet that locates single ages-old studies, trumps Orac’s Medical Degree and PH.D, his directorship of a major breast cancer research laboratory, his years of post doctoral training in surgery and oncology and his years of experience as an oncology surgeon.

    prn can chose whatever treatment for herself, that she desires. Should prn ever have legal guardianship of a minor child who has cancer, prn’s deviation from the standard of care, would be the subject of a Child Protective Services Complaint of medical neglect and would find herself in a courtroom.

    See prn, not only are you a pretend practitioner, you know absolutely nothing about the legal system in this country that protects children, from people like you.

  86. #86 herr doktor bimler
    March 29, 2012

    prn claims to be a cancer survivor

    I have disagreed with her elsewhere but I do not doubt her.

  87. #87 lilady
    March 29, 2012

    I did not intend to convey the thought that prn is making a false claim about her cancer…I further went on to state, “…who has tried to convince us that her alternative treatments are responsible for her continued survival.”

    She has not convinced me that “her alternative treatments are responsible for her continued survival.”

    (revision)

    prn states she is a cancer survivor. She has tried to convince us that her alternative treatments are responsible for her continued survival.

    The rest of my comment is not revised.

  88. #88 prn
    March 29, 2012

    lilady aka FTFY Troll@72
    We are more than a little wary…and more than a little weary …of your *expertise*…
    I am not sure of your new FTFY signature’s preferred meanings :) but I do realize nonmedical civilians like me probably confound your belief system and shoutcasts.

  89. #89 prn
    March 29, 2012

    LL/FTFY Troll@85

    Your rants have so many cumulative errors and presumptions about me, you’re a laugh and a half except that it spreads to others. I told you a year ago that you have a seriously unbalanced or stalker like personality that I seriously regard your provocative-assertions-awaiting-correction as a form of fishing, and would not correct any mistakes about myself. I still mean that, “no” means no, again.

    I try to share my view, literally from my eyes and my ears. You spray unto me many assumptions as you like, worse than a skunk. *You* make provocative statements I won’t acknowledge or correct, and it snowballs.

    The last three oncology surgeons I’ve dealt with are extremely interested in what I have to say. I have real answers to some of their questions, unusual results and interesting questions. In fact when my spouse has accompanied me, there is mirth over their reactions to some of my answers, sometimes like a kid snatching a candy.

    Should prn ever have legal guardianship of a minor child who has cancer, prn’s deviation from the standard of care, would be the subject of a Child Protective Services Complaint of medical neglect and would find herself in a courtroom.
    This statement is wrong and ill informed on several points, that again involve LL’s ubiquitous, mistaken presumptions. In fact, if LL showed up on my doorstep in such a situation, they would definitely look at her like an alien, probably laugh at her, and then either give her a visit to the local sanatorium or a fast ride out of town. Literally.

    I do try to correct factual misstatements about biologically based CAM, because they run so amok here. That doesn’t make me an expert or claimant. It just means I’ve got information and references that you don’t, again.

    As for LL’s appeal to authority on an MD-PhD, my favorite cimetidine reference for colorectal cancer has five MD-PhDs attached. So there :)

    As for Orac, facts are facts. At times Orac doesn’t have a full set, and hasn’t deigned to further fact check his views when I’ve mentioned this. In fact I get the impression he might be politely avoiding this.

    …not only are you a pretend practitioner
    Your projections unto me again. I consider myself either a civilian, or at most, an unwilling draftee in the War on Cancer.

    LL, you know little about me, and it should stay that way. You froth at the mouth like a rabid dog and you like to bite people.

  90. #90 Lawrence
    March 29, 2012

    @prn – you play the reluctant hero so well, any chance Lifetime has approached you for the movie rights?

  91. #91 Michael Hughes
    March 29, 2012

    Careful Lawrence, don’t bring Big Media into it! They’re the one’s holding most of these revolutionary new treatments back in order to use cancer as a plot device in soap operas.

  92. #92 LW
    March 29, 2012

    So, I think we can safely conclude that prn has an N of 1. On the basis of which, prn feels free to pontificate on the proper treatment of cancer patients prn has never seen and to vilify oncologists who have devoted their lives to studying an extraordinarily complex collection of diseases.

  93. #93 Shay
    March 29, 2012

    prn – perhaps the reason it took you so long to find the mortality and injury statistics from F5U isn’t because the mainstream medical community (sounds like the dreaded mainstream media) isnt’ being coy about reporting them but rather because there aren’t as many as your carefully-worded post suggested.

  94. #94 Shay
    March 29, 2012

    my post@93 — (sigh). Subject/verb agreement doesn’t kick in until after the second cup of coffee, I guess.

  95. #95 prn
    March 29, 2012

    You doubt the sub-1% mortality numbers? I was only surprised to find the 2% mortality example. Some injury stats were not so hard to find, just mortality.

    Not quite Russian Roulette, the DPD-5FU mortalities are pretty traumatic for the families involved. I was dissatisfied because I couldn’t get any stats from the oncologists.

    I am not just being antichemo adversarial. Almost two years later, I’m still buying oral type 5FU-LV preparations monthly. I really wanted to know beforehand.

  96. #96 Shay
    March 29, 2012

    Your oncologist did not discuss the pros and cons of this therapy with you?

  97. #97 lilady
    March 29, 2012

    @ prn:

    “Your rants have so many cumulative errors and presumptions about me, you’re a laugh and a half except that it spreads to others. I told you a year ago that you have a seriously unbalanced or stalker like personality that I seriously regard your provocative-assertions-awaiting-correction as a form of fishing, and would not correct any mistakes about myself. I still mean that, “no” means no, again.”

    “prn” You have stated repeatedly here your alternative/CAM therapies for cancer treatment…for yourself…and for other patients. I haven’t made presumptions about you…I’ve mainly left that task to others who comment here.

    You seem to think that I lead the charge of naysayers here and a review of this particular thread disproves that. A review of other threads where you have posted also disproves that. Are you blaming me, because we all are not overly impressed with your “credentials”, your “opinions”, your personal attacks on Orac, your extreme hatred of other oncologists and your fixations on alternative/CAM therapies?

    Who seems to be “unbalanced” and who seems to have a “stalking personality” on this thread, prn?

    I made my first comment at #15…more a “political” comment about blaming our President for the court intervening in a case of suspect parental medical neglect. I then commented at #23 about the legalities of the CPS and the courts representing a child’s interest.

    prn at # 33, you launched into an attack on Orac…suggesting that Orac should blog about another facet of cancer treatment You also fired an opening volley at me because I commented that doctors, CPS and the State have the right (indeed, the duty) to represent the child’s interests.

    Throughout this thread, you have be told by other posters, that your alternative medicine/CAM, your constant personal attacks or Orac and libelous statements about oncologists, are inappropriate and unwarranted…by other posters, not me.

    prn…the rest of your rant at #89 speaks for itself. You are clueless about the law as concerning minors, you persist in personal attacks on me and, you again slam Orac on a professional and personal level.

    About your allegation that I am stalking you, prn. Are you pissed-off that last year, when you were spouted your nonsense and had flooded a thread with cherry-picked and uncited *studies*, I located an old (1938) paper from Japan about one of your favorite non-traditional drugs or magavitamins? I cannot locate that thread prn…perhaps you have it in a folder and can provide it for us.

  98. #98 Antaeus Feldspar
    March 29, 2012

    Can’t say I’ve observed insurance companies fund that much cancer reserarch, not to say that I am in either industry. Probably some guy dead 30+ years that I’ve crossed tracks with several times over the last decade or so, provides more basic research money.

    “not that [you] are in either industry” – exactly. If we were naive enough to assume that you were only saying what you had good reason to believe, we’d think that there was an ideal solution to cancer just waiting to be discovered in the realm of non-patentable basic research – but despite a wealth of evidence showing us that the answer is there, no researcher can both pursue the right research avenue and find any financial support for doing their research. I mean, prn says research is only funded if it leads to patentable solutions, and prn should know since he’s a cancer researcher – OH WAIT, HE’S NOT.

    I don’t care if there has never been a case of an insurance company funding research before; that’s irrelevant. The point is that there are so many entities who would benefit tremendously from a major advance in cancer treatment even if they could not patent the result, that to assert the existence of research avenues that do hold the key but are going unexplored because they wouldn’t lead to patents is just asinine. That’s a crucial part of your argument, BTW, prn; UNLESS you posit that there is some unpatentable avenue of research which shows strong, definite evidence of providing a MORE effective treatment than anything we have currently, your argument that it must be the insistence on patentability that keeps the really important research from being done falls off a cliff.

  99. #99 Militant Agnostic
    March 29, 2012

    Antaeus Feldspar @98

    That’s a crucial part of your argument, BTW, prn; UNLESS you posit that there is some unpatentable avenue of research which shows strong, definite evidence of providing a MORE effective treatment than anything we have currently, your argument that it must be the insistence on patentability that keeps the really important research from being done falls off a cliff.

    For example Peace River and another small town in Alberta got behind DCA research at the University of Alberta. In Peace River people were donating such items as an entire bison* (cut and wrapped) and a load of gravel for auctions.

    *Once you’ve had bison, you’ll never go back to beef.

  100. #100 JGC
    March 29, 2012

    If nothing else, anyone responsible for funding the discovery of a non-patentable cure for cancer would drink free in any bar in the nation for the rest of their natural lives.

  101. #101 prn
    March 29, 2012

    …your constant personal attacks or Orac
    You apparently mean any time I civilly voice the slightest correction or disagreement with some part of his blog

    prn at # 33, you launched into an attack on Orac
    I’ve made no attacks on Orac. #33 Has two parts with respect to Orac:

    First I criticized the quality of this specific blog about Jacob and family in that it was focused on polemicizing Mike Adams’ polemic and neglected useful, close detail about Jacob and his disease. I felt Orac should have presented more papers and data relative to the risks that Jacob’s parents were taking with fewer cycles despite early, high response and possible cumulative dose side efects, given Orac’s heavy criticism of them. That is not an attack on Orac.

    Second, since this blog concerned a child with early treatment cessation where the parent has some claim to doing their homework, I was reminded about Katie Wernecke where Orac seemed even more pessimistic. This is not an attack on Orac, although I can see where a jihadist might think so because the point might be construed to “desecrate” His infallability.

    …not overly impressed with your “credentials”
    I try to avoid appeals to authority

    … libelous statements about oncologists,
    “libelous”, ha ha. Apparently you just parrot LW@68. I had taken the pains to find (not linked though) Jacob’s parents’ emphatic complaint about a nonexamining, nointerviewing, nontreating oncologist for the State representing herself as the treating physician and suborning judges, to the point two judges in series recused themselves!

    Yes, the R-I comments section can be a very hostile place with ad hominem “skeptic” attack packs for people with real scientific backgrounds trying to have a sober discussion.

    …About your allegation that I am stalking you, prn
    You repeatedly demanded personal information, even after I emphatically said “no” and then switched to the heckle and provoke mode on fabricated personal details.

    your…#89 speaks for itself…. you again slam Orac on a professional and personal level.
    What? I wrote, “As for Orac, facts are facts. At times Orac doesn’t have a full set [of facts],….” That’s a personal/professional slam?? OMG! You really think he’s omniscient. I’ve read Orac’s stuff on certain subjects, and I will tell you point blank, he missed critical facts in his reading, caveats or acknowledgements, because he can’t honestly say what he does without qualification *with* the missing pieces.
    It’s a part of being human that it takes time to find, accumulate and process new facts. This is an ongoing problem with you, LL – hyperreactivity to anything you don’t know or that doesn’t fit with your preconceived notions in your once trained universe. A lot of hyper reactivity.

    You are clueless about the law as concerning minors,
    You are so egocentric in your little Frank Sinatra world (New York…) trying to apply your local laws, malpractices and their interpretations universally. I asked my currently practicing registered nurse yesterday just to be sure. Thankfully we don’t have some of the particular kidnapping and decline problems your area does.

    ….when you were spouted your nonsense …, I located an old (1938) paper from Japan about one of your favorite non-traditional drugs or magavitamins? I cannot locate that thread prn…
    Google and I don’t recall such a notably unusual reference either, perhaps you’ve confused intent to write or with someone else. Or perhaps an interesting combination of ad hominem and confabulation.

  102. #102 LW
    March 29, 2012

    prn, do you know what “suborn” means? It means, “to induce secretly to do an unlawful thing”. Note those two special words, “secretly” and “unlawful”.

    If this oncologist had in fact suborned judges, they would not have recused themselves; they would have done whatever unlawful thing she secretly induced them to do.

    If she had tried to suborn them but failed, they might have recused themselves, but they would certainly have had her arrested.

    Subornation of judges is a crime, prn. If this oncologist had been charged with this crime, prn, I expect that World Net Daily would have reported it. If you have knowledge of this crime, prn, I suggest you contact the relevant law enforcement authorities because those judges need to be removed from the bench. If you don’t have knowledge of this crime, prn, I suggest you stop throwing around this libelous accusation.

  103. #103 lilady
    March 30, 2012

    I simple don’t know why prn keeps posting here.

    She continually criticizes Orac on his posts about cancer care…superimposing her *unique speshul* knowledge about every type of cancer and every type of cancer treatment…just begging for an acknowledgment that she is correct.

    “About your allegation that I am stalking you, prn

    You repeatedly demanded personal information, even after I emphatically said “no” and then switched to the heckle and provoke mode on fabricated personal details.”

    Bullshit prn, here are the questions and the comments about your “monitoring you *immune parameters* at home. I asked you which lab was monitoring which “immune parameters” and you replied that you had a blood draw in the AM and “mailed” the blood to a lab…with the results available to you in afternoon. You provided what you stated were your own personal CBC/differential…then got pissy-eyed, paranoid and accused me of stalking you:

    http://scienceblogs.com/insolence/2011/02/naturopathy_versus_science.php

    “Second, since this blog concerned a child with early treatment cessation where the parent has some claim to doing their homework, I was reminded about Katie Wernecke where Orac seemed even more pessimistic. This is not an attack on Orac, although I can see where a jihadist might think so because the point might be construed to “desecrate” His infallability.”

    I cannot follow you about your “jihadist” label…Orac or me…or both of us? Did anyone ever instruct you about the basics of posting on a blog…or libel. You throw around accusations of terrorist! or jihadist! like school girl taunts, but they are libelous.

    “You are so egocentric in your little Frank Sinatra world (New York…) trying to apply your local laws, malpractices and their interpretations universally. I asked my currently practicing registered nurse yesterday just to be sure. Thankfully we don’t have some of the particular kidnapping and decline problems your area does.”

    Excuse me prn…what does Frank Sinatra have to do with this blog? And, prn, the only State law regarding parental medical neglect was the link I provided, to the Michigan State Law, where the child resides.

    I really doubt that you spoke with your “currently practicing registered nurse yesterday” about any of this.

    OTOH, prn…you might want to talk to your “currently practicing attorney” about your behavior here, you libelous words, and show your attorney the post that I linked to. Try also speaking to a psychiatrist to get some help for your paranoia and your delusions.

  104. #104 prn
    March 30, 2012

    LW, do you have a law license in Michigan? Or are you just practicing from the kitchen of UPL (Unauthorized Practice of Law) University at the RI branch?

    From the accounts online, phrases like [1st] “judge had to recuse himself” and “…judge was forced to recuse herself” suggests “try to” is substantially lacking in accuracy, that irregularities *were* induced, and I did additionally condition the statement, “a doctor appears to campaign, suborn judges and public officials.” That however temporarily, “suborn” was achieved, as my legitimate opinion about a public controversy that appears to clearly involve legal irregularities and questionable official (and medical) conduct.

    LW, this kind of ham-fisted intimidation is one of the growing peeves of patients everywhere, with a care about their health, finances, and health policy. For far too long campaigns of ad hominem and intimidation have been used to usurp private choices, public policy and offical actions as well as disrupt public discussion.

  105. #105 prn
    March 30, 2012

    LL@103
    My posts, Jan-May, 2011 are fine, far more polite than received, and quite defensible.

    Your aggressiveness compounds your ignorance and presumptions. I walked by the nurse while she was fiddling with a heplock, mentioned your doubts to the nurse, and she just laughed.

    I might also add that the #1 reason vexatious, domineering tyrants get pissed off around me is that I see facts and complex systems more readily than most, including stupidity complexed with bluster and bs, a very dangerous, highly explosive mixture.

    Clearly I was not suggesting Orac as a jihadist, but rather as the recipient of such adulation.

    …Frank Sinatra New York, proximate to someone’s center of the universe

    only State law regarding parental medical neglect…to the Michigan State Law, where the child resides.
    and the Michigan DHS lost its little power play.

    Persons casually throwing around legal threats are probably the ones who could profitably invest in a little stop and chat with the psychologist or psychiatrist.

  106. #106 LW
    March 30, 2012

    prn complains that Orac didn’t give a link to the full story and prn had to google for it.  Well, prn didn’t either, and I had to google for it too.

    Here is where I found the story.  It is not a neutral account, but it does contain a description of how the two judges came to recuse themselves: 

    When they returned on the 19th, the judge had revealed that Dr. Lisa Markman had called him to discuss the case and “urged” him to make the ruling in the DHS’ favor.  … With that, the judge had to recuse himself.

    A second judge was forced to recuse herself, also, because the head of the DHS in Marquette discussed the trial with her.

    Note to prn: subornation is like bribery.  If you say a judge was bribed, you mean that he took the bribe.  If you say a judge was suborned, you mean that he committed the unlawful act.  In contrast to prn’s claims, neither judge was suborned.

    In the first case, it does appear that there was improper contact between the doctor and the judge, and the judge rightly decided to recuse.  But clearly he did not believe that this contact was an attempt to suborn him, for if he had, he would have had the doctor arrested.  Judges do not appreciate attempts to suborn them.  Nor, I think, do they appreciate false accusations that they have been suborned, so it’s a good thing for prn that prn comments anonymously.

    In the second case, notice that Dr. Markman didn’t contact the judge at all!  Contra to prn’s claims, Dr. Markman did not even have contact with “judges”, just the first judge.  The second judge had discussed the case with an entirely different person.  That doesn’t necessarily indicate anything improper; at the time of the discussion, the second judge may not have been assigned to the case or had any  reason to believe she would be assigned to the case.

    Judges recuse themselves every day, for one reason or another such as personal connection to the case or parties.  It does not indicate that there was any attempt by anyone to suborn them.

    Accusing someone of “suborning judges” is a very serious accusation.  Whatever one may think of the heavy-handed actions of the authorities here, that does not justify accusing this doctor of a crime, nor accusing these two judges of crimes.

  107. #107 prn
    March 30, 2012

    The interactions with LW, Lawrence and Lilady have turned discussion into a circus diversion of personalities, ad hominem and petty word games.

    Suborn comes in many sizes, flavors and degrees with various social conventions, and even the occasional criminal charge. I attempted to succinctly condense the situation the first time in #47. I’m done on that subject, for me further discussion is trolling and naked attack.
    —-
    The real medical issues if people are going to cluck their tongues legitimately or kibbitz productively are:
    - The odds and circumstances that Jacob might have an early durable complete response at various treatment levels with conventional tx.
    - A real time means of better measuring and estimating the achievement of a likely durable response to foreshorten unnecessary treatment toxicity.
    - The type of alternative treatments that might function alone as maintenance, or in a complementary fashion to reduce toxic load of conventional tx.

    Has anyone heard what alternative clinic or treatment that Jacob’s parents found since the court case? Thank you in advance for good faith discussions.

  108. #108 Maisie
    March 30, 2012

    As much as I suspect that the parents are making a huge mistake, I have to wonder if it might be better for the authorities to back off somewhat; the family can’t make a good decision if they feel threatened.

    I also wonder if the parents have consulted other oncologists.

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