Respectful Insolence

Starchild Abraham Cherrix doing well?

Ensconced at a conference center in North Carolina near Abel‘s and Bora‘s home turf since Saturday, I appear to have missed an update on the story of Starchild Abraham Cherrix. As you may recall, he is a 16 year old who fought for the right to pursue “alternative” therapy over evidence-based medicine to treat his relapsed Hodgkin’s lymphoma. Last month he and his parents agreed to a compromise with the court in which he would be allowed to pursue his desired form of quackery (known as the Hoxsey therapy) in addition to other therapies in the clinic of a radiation oncologist named Dr. Arnold Smith, who is known for using an unproven and (in my opinion, at least”) rather strange and dubious “immunotherapy” in addition to more standard radiation treatments. Although since the court ruling a month ago the clinic, Abraham, and his parents have been tight-lipped over exactly what therapies Abraham would be receiving other than the Hoxsey therapy plus unspecified alternative therapies administered by Dr. Smith, Abraham has stated to the press that he might agree to radiation therapy. He also continues to maintain that he will not accept chemotherapy.

Not surprisingly, one of the readers who are unhappy with my commentary on this couldn’t resist pointing this story out to me and gloating:

GREENWOOD, Miss. – A Virginia teenage cancer patient appears to be improving less than a month after he won a court fight to forgo chemotherapy and seek alternative treatments, his doctor said Friday.

“His tumor is shrinking very nicely and he’s gaining energy and stamina,” said Dr. Arnold Smith, medical director and radiation oncologist at the North Central Mississippi Regional Cancer Center in Greenwood.

It was the first update on 16-year-old Starchild Abraham Cherrix’s condition since his family was allowed to pursue alternative treatments in his battle with Hodgkin’s disease.

Neither Cherrix or his doctor would discuss specifics about the treatment, but the teen’s father said chemotherapy was not part of the treatment plan.

The teen was diagnosed last year with Hodgkin’s disease, a cancer of the lymphatic system that is considered treatable in its early stages. He said he was so debilitated by three months of chemotherapy that he declined a second, more intensive round early this year. He has said he thought it would kill him.

His then-oncologist alerted social services officials when the teen chose instead to go on a sugar-free, organic diet and use an alternative herbal liquid treatment called the Hoxsey tonic. The treatment was banned in the United States in 1960.

Cherrix, dressed in bluejeans, a button-down shirt and a baseball cap that read: “Victory shall be mine,” said he’s feeling excellent.

“This treatment has been working for me,” he said. “I’ve had a tremendous boost of energy.”

Of course, along with the heads up to the story above came a little abuse:

I love it!

No doubt you had this kid dead and buried for not wanting to take the chemo poison that his allopathic ‘doctor’ wanted to force upon him.. Oh sure, the Hoxsey is just snake oil, isn’t it? The natural medicines are all based on voodoo flummery ad bunk science that *never* takes into account any understanding of environmental agents and the biological responses to them that are the end result of evolution of the human immune system.

Oh, it’s all got NO no chance of working at all, right?

Besides, who needs evolution and nature-based chemicals that have componet structures that work in the body – we have man-made *patented* (for NO small profit) SYNTHETICS!!! SO much better for our human *evolved* bodies.. never mind the toxic reactio… errr… ‘side effects’. We can give you MORE patented drugs to cover that… and our stakeholding overlords’ retirements..

>>crickets

..crow is a pretty tasty dish when you learn to eat it.

Sigh. Where to begin? First off, as Abel would tell you, any difference between “nature-based” chemicals and “synthetic” chemicals is purely arbitrary. In the one case, they are made by plants or other organisms in nature; in the other case, they are synthesized by humans, most often based on natural products, to modify them to have more useful properties than the natural product on which they are based; i.e., more efficacy, better absorption through the GI tract, a better side effects profile, a longer half life, etc. For example, I would point out that several commonly used chemotherapeutic drugs that this particular commenter would no doubt consider to be “synthetic” are in fact derived from plants. For example, Taxol, a commonly used and very effective breast cancer chemotherapeutic agent, is isolated from the bark of the Pacific Yew tree. The above rant is the same old tired “natural is better” blather. “Natural” (whatever that means in this context) is not necessarily better. It may be. But it may not be. But that aside, let’s move on to the Cherrix case:

Point one: As anyone who has read my posts on this story knows, I am not in any way happy about Abraham’s plight and decision, nor was I gloating about his near certain impending death, as was implied. That’s nothing more than a personal attack and a diversion, and thus, although it annoys me, I see no need to answer it specifically other than to point it out for all to see.

Point two: We have only Abraham and his doctor’s word for remarkable improvement. No objective evidence is shown (such as tumor measurements). No doubt at present they believe he is getting better. However, if Abraham weren’t doing well, do you think we would have heard about it from his doctor and him? Do you think he would have appeared in public? Probably not. Also remember, Abraham is the same person who stated that he was doing just fine on the Hoxsey therapy even in the face of his tumors continuing to grow. In any case, no one ever claimed that Abraham wouldn’t do well for a while. Hodgkins usually doesn’t kill that fast. If Abraham’s still alive in five or ten years, then I might start to rethink my position. I hope he gives me that opportunity by surviving that long, but the odds are very long against that happening. Will the commenter (“Deb”) rethink her position if Abraham dies?

I sincerely doubt it.

In any case, the correlation between initial tumor shrinkage in response to therapy and overall outcome is not nearly as strong as you might think. True, there is certainly a strong correlation between failure of a tumor to shrink in response to therapy and a bad outcome (treatment failure and death), but that’s a different thing. So, overall, it’s a promising thing if a tumor shrinks, but it by no means guarantees long time survival. Even Abraham’s doctor doesn’t claim he can cure him:

He [Abraham] has been in Mississippi for three weeks now, under the care of Dr. Arnold Smith, a Mississippi radiation oncologist who started the North Central Mississippi Regional Cancer Center in 1994.

Smith uses immunotherapy, a treatment that uses a combination of conventional medication, natural supplements and diet to restore and bolster a patient’s immune system to better fight cancer.

When asked about what Abraham’s chances of survival are, Smith said, “I can’t speculate. I know he had a very dangerous disease, and he still has a dangerous disease.

“I am not claiming that I can cure him,” he said. “I am claiming he is curable. I am not asserting I can cure him. I’m going to do the best I can.”

How’s that for confidence-inspiring? At least Dr. Smith is honest about this. And he’s right. Abraham is probably still potentially curable. However, his odds of actually achieving that cure would almost certainly be much, much better with conventional chemotherapy than with radiation therapy plus a poorly defined and unproven “immunotherapy” protocol.

Point three: Notice that Dr. Smith says “tumor,” not “tumors,” as in Abraham’s tumor is shrinking. Which one? He had tumors in his neck and chest. I have no way of knowing for sure until the Cherrixes and Dr. Smith decide to release more information, but I’ll make an educated guess at what’s probably going on here. Abraham has more than likely accepted radiation therapy for the tumor in his neck, most likely to prevent it from growing to the point where it obstructs his windpipe and or esophagus. I’ve pointed out before that radiation is excellent palliation in these situations, and, if my guess is correct, I’m quite happy that he’s accepted radiation and his tumor is responding. (It really sucks to need a tracheostomy or a gastrostomy tube.) If that’s true, there’s no mystery and no need to appeal to the Hoxsey therapy or Dr. Smith’s “immunotherapy” to explain his tumor shrinkage. Hodgkin’s disease almost always responds to radiation, at least initially. In addition, depending on the bulk of disease in his chest, it’s possible, although less likely, that Abraham is also getting radiation to the chest, assuming tumors are small enough to be encompassed in a radiation field without too much collateral damage to surrounding normal tissue. If that’s the case, that’s good, too. It will have a good probability of preventing even more dire complications of his tumor in the chest, such as superior vena cava syndrome. The problem is, in relapsed Hodgkins disease, without chemotherapy to clean up the microscopic deposits of tumor cells elsewhere in the body, the cancer will almost certainly recur. Remember, years ago, early stage Hodgkin’s disease was often treated only with radiation alone, and the results were not bad. They weren’t as good as they are now, but survivors were fairly common. Radiation alone is very unlikely to cure advanced stage relapsed Hodgkin’s disease, but it can be excellent palliation.

Given the reasons above, I’m fairly certain that Abraham is receiving radiation therapy in addition to what ever Hoxsey concoction he is still taking and whatever “immunotherapy” Dr. Smith is administering. I could be wrong, but I ask this: Knowing that Dr. Smith is a radiation oncologist by training and the case I’ve laid out above, would anyone be willing to bet that Abraham isn’t getting radiation? I wouldn’t. Unfortunately, we won’t know until the Cherrixes decide to let Dr. Smith reveal the specifics of the protocol–if they ever do.

Think I’m full of crap? Consider this:

The home-schooled Chincoteague boy is expected to be in Mississippi until mid- to late October. Abraham’s tumors are located in his neck and near his windpipe.

What did I say about preventing obstruction of his windpipe?

In any case, assuming that Abraham is getting radiation and some form of “immunotherapy,” even if he survives five years it would not constitute evidence that the Hoxsey therapy cured him. After all, he’s clearly taking something other than the Hoxsey therapy, whether radiation is part of that protocol or not. Were he to survive, it’s far more likely that such a happy result would be the result of the combination of radiation therapy and “immunotherapy” or just the radiation alone. “Deb” seems to assume that it is the Hoxsey therapy that is responsible for the reported tumor shrinkage. The problem with that line of argument is that even Abraham and his parents acknowledge that Abraham’s tumor continued to grow when he was using only Hoxsey therapy.

One last word about Dr. Smith, the doctor who has taken over Abraham’s case:

Smith said his philosophy differs from those of many doctors in that he thinks the patient should have the last word on their treatment. He says patients should have the right to seek innovative, more natural methods and that physicians should have the right to provide them.

He said supplements such as vitamins, minerals, and antioxidants that come from natural sources such as grapes can be powerful tools in the fight against cancer but that many health professionals shun such practices because of the lack of randomized, controlled studies of the methods.

Yes, we physicians do tend to shun non-evidence-based treatments, which is as it should be. The claim that we reject such treatments because there are no randomized controlled trials supporting their use is only partially true. Such a statement leaves out the fact that there is no good objective clinical data from well-designed studies (randomized or otherwise) supporting the use of such treatments. There are only testimonials, and testimonials almost never rise to the level of even anecdotal evidence. Purveyors of “alternative” medicine will often raise the “no randomized clinical trial” bugaboo, which is designed to paint those of us who advocate “evidence-based medicine” as too cautious and dogmatic. You don’t always need a randomized, controlled clinical trial to prove efficacy; in cases where such trials are not practical or feasible, a collection of retrospective trials will sometimes suffice. In reality the usual reason for playing the “no randomized, controlled trials” gambit is that there is actually no good, objective evidence, period, from even well-designed retrospective or case-control trials.

Besides, why on earth should physicians have the “right” to provide treatments for which there is no evidence of efficacy from well-designed clinical trials? We physicians don’t have a “right” to provide any treatment to patients. Being a physician is a privilege, not a right, and we are granted this amazing privilege of treating patients based on demonstrated competence and commitment to provide only treatments for which there is good scientific and clinical evidence of efficacy. At best, treatments without adequate evidence for efficacy should be considered as strictly experimental, to be given only under the auspices of a well-designed, IRB-approved clinical trial with careful informed consent. At worst, such treatments can be quackery. I don’t know under which category Dr. Smith’s treatments fall, but he has no inherent “right” to provide them if he cannot produce scientifically compelling evidence that they are efficacious.

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ADDENDUM: Predictably, “Deb” also mentioned the case of Billy Best, the boy who “ran away from chemotherapy.” The Best case is beyond the scope of what I intended today and thus should probably be treated in a separate post. Because I am away at a conference, I may not get to it until next week, but get to it I will–eventually. Given the number of times the Best case been mentioned as “evidence” that alternative therapies supposedly work, I think it may be worth discussing.

Comments

  1. #1 Amy Alkon
    September 18, 2006

    The dogmatic ones are those who insist on “natural” therapies. As you suggest here, doctors aren’t against any form of therapy per se, they’re just for those that work, for which there’s evidence of the therapies working. It seems so sensible to me — I guess, because it is. I would bet those who advocate the woowoo approach to medicine are religious (traditionally, or believe in astrology and other crapthink).

  2. #2 Blake Stacey
    September 18, 2006

    Alan Alda had a great response to the “natural is better” non-argument. At a Caltech commencement speech, he described the people who hold up a root or a leaf and say, “It can’t hurt you because it’s natural”; then he added, “So is deadly nightshade.”

  3. #3 Dianne
    September 18, 2006

    One comment on the “vitamins and minerals will cure/prevent cancer” meme. This one has been tested in randomized controlled trials and the answer is, sadly, that high doses of vitamins generally either do nothing or make the situation worse. See, for example: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=8901854

  4. #4 Calli Arcale
    September 18, 2006

    Regarding Alan Alda’s comment, my preferred response is “So is hemlock, and look what it did to Socrates.” ;)

    The biggest problem with the news release, IMHO, is that it is far too soon to make any judgement about his long-term prognosis. I’m no expert, but I know enough to know that. I wouldn’t take the Hoxley treatment based on this. It’s just not enough to persuade me to take the risk. At least there’s evidence for the other stuff (chemo, radiation, surgery), and not just some doctor’s say-so.

    I do think the kid is old enough to make his own decisions as far as this goes; I’d hate to be a parent forcing a teenaged child to undergo a painful regimen of chemotherapy. My aunt died of metastatic breast cancer, and watching her go through it was very painful. In her case, she did undergo conventional therapies which were unneccesary — unneccesary because while they did somewhat prolong her life, by then her quality of life was so poor I’m not convinced it was worthwhile to do so. It is what she wanted, though, and I have to respect that. I’m not so sure I respect the medical staff who lacked the courage to tell her the truth about her prognosis, though. (I have nothing against doctors; I have many in my family. But the hospital foisted her off on a series of interns, who lacked the experience to handle that sort of bad news. So they simply didn’t.)

    So, I have to respect this kid’s decision, and his parents’ decision. I do not think it is right for the state to try to take custody of the boy and force him to take chemo. He’s old enough to decide, and anyway, I worry about the precedent when the state decides what’s best, medically. (Especially with increased government funding to fairly wacky ideas and decreased funding to the FDA and NIH.) But I’m not so sure I respect these “alternative health practitioners” who seem to have given him pretty serious false hope. That’s what really bothers me. Not parents having the right to choose the best and most innovative medical care for their children, or being allowed to decide when to stop a treatment. What bothers me is when someone profits from their desperation, and I greatly fear that that’s what’s happening here.

  5. #5 Garrett
    September 18, 2006

    I tend to tell these people to wander into the forest and eat all the different mushrooms they find.

  6. #6 anonimouse
    September 18, 2006

    I took some DMSA last week. I already feel more social. Therefore, DMSA cures autism and the rest of you are ignorant drug company apologists.

    (note: I didn’t really take DMSA. Everyone knows IV EDTA is the only thing that works.)

  7. #7 epador
    September 19, 2006

    Altie position:

    Quick, lets gloat and wax sophoric before he goes south.

    Allopath position:

    Well, its nice to hear, but lets wait til we get the whole picture and some time passes to see what happens.

    My guess is either he’s getting RT, or prednisone (which also shrinks HD and causes a “burst of energy”). He could even be sneaking in some chlorambucil, which orally doesn’t cause much in the way of side effects and could cause a partial response.

  8. #8 Andrew Dodds
    September 20, 2006

    Let’s imagine that whatever combination of treatments Dr Smith is giving Abraham really is working and has a high cure rate for hodgkin’s.

    WHY WILL HE NOT TELL US EXACTLY WHAT THIS TREATMENT IS?

    Deliberately withholding information on a cancer cure would be tantamount to mass murder on a vast scale.

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