Steve Jobs

"Right to try": A miserable failure thus far

oracknows — Thu, 08 Sep 2016 04:45:28 +0000

"Right to try": A miserable failure thus far

I’ve frequently called “right to try” laws that are popping up in various states like so much kudzu, to the point where 31 states have passed them in a little over two years, an amazing pace, a cruel sham, given how incredibly unlikely they are to help a single patient. Basically, state-level right-to-try laws are the brainchild of the libertarian Goldwater Institute and all based on a template that it produced. Their purpose is not, as the Goldwater Institute claims, to help patients, but rather to weaken and ultimately neuter the FDA’s power to regulate drug approval and thereby help to usher in a libertarian utopia in which drugs don’t need approval and the free market magically guarantees safety and efficacy through various “independent” testing labs. Unfortunately, in order to achieve its ultimate aim of neutering the FDA, the Goldwater Institute has made promises to patients that right-to-try can’t keep, enlisting them as their most effective foot soldiers to get such legislation passed. Unfortunately for patients, it’s been an incredibly effective tactic, because opposing right-to-try has successfully been framed as being heartless and taking away the last hope of desperate patients, all the while twirling one’s moustache, to the point where opposing right-to-try is viewed as being akin to being for burning the American flag while eviscerating puppies. No wonder politicians have, by and large, not even tried to stop right-to-try, other than Governor Jerry Brown.

One of the seemingly most compelling arguments in favor of right-to-try is that the FDA’s Expanded Access Program (a.k.a. Compassionate Use) is too cumbersome and doesn’t benefit very many people. I’ve addressed that trope before, pointing out that the FDA has make Expanded Access much easier and that it rarely rejects such applications. In comparison, I’ve thrown the question back at the Goldwater Institute: How many patients have benefited from right-to-try? Heck, I set an incredibly low bar and don’t even require that these patients have benefited. I ask how many patients have even received experimental treatments through a right-to-try law. Oddly enough, even though the Goldwater Institute claims it knows of 40 patients receiving experimental therapies through right-to-try (compare that to the 1200-1800 yearly who receive experimental therapeutics through Expanded Access), it never seems able to provide more details. Personally, I’ve called BS on its claims, but still periodically ask. I also note that at least one patient used right-to-try to access cancer quack Stanislaw Burzynski’s antineoplastons.

Frustrated by the professed lack of knowledge of patients who have benefited from right-to-try, even though it’s been well over two years since the first right-to-try law passed in Colorado, I decided to take matters into my own hands. Basically, the rationale for my approach was as follows. I did some searches on GoFundMe and Caring Bridge, two websites frequently used by patients to raise money for medical care. As ‘ve pointed out many times, if there were patients getting medications through right-to-try laws, given that most of these laws don’t require that drug companies provide right-to-try drugs for free, there would be some of those patients on GoFundMe and Caring Bridge asking for money. I must admit, the results were...disappointing.

First of all, a lot of what came up were comments about how various users of these two sites thought they were “right to try” to fund their efforts. In one example, a couple raising funds for in vitro fertilization stated that they thought they were “right to try.” In others, patients were raising funds for standard therapy but stating that they were advocating for right-to-try. This, of course, made finding true “hits” very difficult. Even so, basically I could find only two potential hits, and of those only one really seemed credible. For example, look at Patrick Sheridan, a man with pancreatic cancer:

I want to make something clear. This thing is only in me temporarily. It is not killing me. I am killing it. It picked the wrong person to mess with.
Traditional U.S. methods for for fighting cancer with chemo, radiation, and surgery aren't viable options for me at this time. My family and loved ones who have banded together to help me win this fight and I have already begun an aggressive mix of alternative and cutting edge therapies. I'll share more about the people and the therapies soon.

Unfortunately, many of the therapies that show the most promise (and in many countries, amazing results) are not covered by insurance. Some of these therapies may be available to me in the U.S. under Right to Try and Compassionate Use laws. Other, may only be available outside the U.S. We are pursuing them all. Most of you know how difficult it is for me to ask for help, but I'm asking for yours. A Go Fund Me page has been set up to help us cover some of the enormous costs it's going to take to beat this. Any help is greatly appreciated.

Unfortunately, Mr. Sheridan appears to be pursuing a mixture of pure quackery (like high dose vitamin C) along with treatments ranging from the questionable to possibly useful. Reading his sites, I could find no evidence that he accessed any experimental treatment through right-to-try.

So I moved on to the other potential hit, Gail Christopher, who has a GoFundMe page. Here is her story:

My cancer journey began September 30, 2008 after being diagnosed with Stage IV pancreatic neuroendocrine tumors, that had already spread to my spleen and liver. Fast forward 7 very tough years which have included a distal pancreatectomy, splenectomy, liver wedge resection with ablation, removal of gallbladder, another liver surgery to remove 2 large tumors, 2 liver embolizations and unfortunately breast cancer surgery with a partial mastectomy. During this time I was on 7 different chemotherapy treatments and chemo is no longer working for me as the tumors have gotten very large on my liver and are pressing against my lungs and have metastasized to my
heart.

Having this rare disease, means that a lot of already scarcely available drugs will not work for me, so my treatment options are extremely limited. This cancer has been resistant to standard chemotherapy, however, I continue treatment because I am determined to fight this terrible disease to ensure I am able to look at the beautiful sunrise from my bedroom window, snuggle with my precious dog Jack and be around to see my nephews and nieces get married.

Recently, I applied for a clinical trial at Memorial Sloan Kettering to participate in an exciting new therapy called PRRT, Peptide Receptor Radionuclide Therapy. Unfortunately, my hopes were dashed during the screening checks when they shared that my tumors are too large and what is termed "poorly differentiated."

I can’t help but note that Steve Jobs died of a pancreatic neuroendocrine tumor. These tumors tend to be indolent, slow-growing, but relentless. Thus, an eight year course after diagnosis is not at all unusual for this particular tumor type. Christopher notes:

PRRT will be a huge financial burden, and that is why I am reaching out for private funding. Any donation you could generously offer will be used to pay for my treatment which alone is approximately $38K, this does not include the additional expenses of traveling out of state and accomodations for multiple extended periods.

PRRT has been available as a life-saving treatment in Europe for 15 years but sadly is not FDA approved in the US. I will be undergoing 4 PRRT treatments at Excel Diagnostics in Houston, TX every 6-8 weeks. Excel is able to offer this treatment due to a "A Right to Try" act, which states terminal patients have a right to try any medicine to prolong their life whether FDA approved or not.

So what is PRRT? It’s a therapy that is simple in concept but not in execution. In the case of pancreatic neuroendocrine tumors, PRRT uses the fact that pancreatic neuroendocrine tumors express a lot of a protein, a receptor, that binds a molecule known as somatostatin. PRRT takes advantage of that by labeling somatostatin, although it uses another molecule that binds to the same receptor, octreotide. In PRRT, octreotide is combined with a therapeutic dose of radionuclides, with the most common ones being Yttrium 90 (Y-90) or Lutetium 177 (Lu-177). Basically, the idea is to target the cancer with a radioisotope by taking advantage of a specific molecule’s affinity for a receptor unique to the cancer. The radionuclide-conjugated molecule binds to the receptor on the tumor cell and kills it, thanks to the radiation from the radionuclide.

It turns out that Excel Diagnostics is based in Houston and uses Indium-111 or Lutetium-177 Octreotide therapy. There are several clinical trials on LRRT listed on PubMed, and Excel Diagnostics is listed as an investigator in several trials. Oddly enough, most of the trials have statuses listed as “Active, not recruiting” or “unknown.” In the meantime, I note that the Texas right-to-try law has a provision that is rare:

(c) If a manufacturer makes available an investigational drug, biological product, or device to an eligible patient under this subchapter,the manufacturer must provide the investigational drug, biological product, or device to the eligible patient without receiving compensation.

Yet, according to Gail Christopher, her treatment will cost $38,000 not counting travel and lodging expenses, of which she has raised $16,665 so far, according to the GoFundMe page. It is not at all clear to me whether these charges are for the whole treatment, or if Excel Diagnostics is providing its drug free of charge but that the ancillary medical expenses will be $38,000. I have to assume that the drug is being provided free of charge if Christopher is truly accessing radionuclide-labeled somatostatin analogue through right-to-try. Given that the company’s products are in active clinical trials as part of the process for FDA approval, one can’t help but wonder whether she’s actually receiving the drug under the FDA’s Expanded Access program, because I wonder whether Excel Diagnostics would be willing to take the sort of risk of administering the drug without the FDA’s blessing.

Whatever the case, at her latest update, which is from four months ago, Christopher states:

Well, I leave again for Houston in 2 weeks for PRRT treatment number 2. This treatment is WORKING!! When I last updated everyone my cancer specialist sent me to a bone surgeon to look at resecting cancer in my frontal bone on my skull. While waiting for that appointment with the bone specialist, the tumor disappeared!! I have to believe that it's working on other tumors in my body also. Thank God!!

I've applied for a small grant to assist me with these medical expenses and will hopefully hear good news on that in June. I'm still hoping to raise almost $25K to pay for treatments 2, 3 and 4...and I want to thank everyone who has donated so far. Some have gone over and beyond and have sent in a second donation for my second upcoming treatment.

I hope that Christopher continues to do well, but the lack of an update in four months and a seemingly dormant GoFundMe page is certainly cause for concern, at least to me.

Curious, I looked up what Excel Diagnostics is offering and found this:

Excel Diagnostics & Nuclear Oncology Center is pleased to announce that after careful review the Federal Drug Administration (FDA) has approved Investigational New Drug Clinical Trial by LU-177 Octreotate for patients with Neuroendocrine cancers. Excel Diagnostics & Nuclear Oncology Center is the first research facility in North America to receive authorization to initiate this much needed cancer therapy.

This therapy can be applied to the category of neuroendocrine tumors which include Carcinoid, Islet Cell Carcinoma of the Pancreas, Oat Cell Carcinoma of the Lung, Pheochromocytoma, and Iodine refractory or Medullary Thyroid Carcinoma”.

On ClinicalTrials.gov, I found two potential trials of PRRT in neuroendocrine tumors with which Excel Diagnostics is involved: 177Lutetium-DOTA-Octreotate Therapy in Somatostatin Receptor-Expressing Neuroendocrine Neoplasms and A Study Comparing Treatment With 177Lu-DOTA0-Tyr3-Octreotate to Octreotide LAR in Patients With Inoperable, Progressive, Somatostatin Receptor Positive Midgut Carcinoid Tumours (NETTER-1). According to the Society of Nuclear Medicine and Molecular Imaging’s patient guide, PRRT is palliative, not curative, and it can be effective at slowing the progression of advanced neuroendocrine tumors and in relieving symptoms. Evidence suggests that at least one form of PRRT is most effective against well- and moderately differentiated somatostatin receptor-expressing neuroendocrine tumors (which Christopher did not have, which is why she was not eligible for the existing clinical trial).

As I said before, however Christopher received PRRT, through Expanded Access or the Texas right-to-try law, I hope she is doing well, despite the lack of recent updates on her GoFundMe page. From what I can tell of her story, she certainly looked like a good candidate for expanded access, given her history, but obviously I can’t know the details of her case other than what she has chosen to reveal. I do know, having known a friend of a friend who suffered for several years with a neuroendocrine tumor and the symptoms it caused, that, even though such tumors are usually slow-growing, they are nonetheless a nasty set of tumors because of the symptoms they cause.

I’ve said before that, if lots of patients were benefiting from right-to-try or even if it is only the 40-60 patients that the Goldwater Institute claims to know about, their social media footprint would be visible and unmistakable, given that in most states right-to-try does not require the company manufacturing the experimental therapeutic to provide it free of charge. I would expect to see patients on sites like GoFundMe asking for money to help with the expense. I’d expect to see patients who succeed in accessing drugs under right-to-try to be trumpeting their fortune on Twitter, Facebook, and other social media. What is remarkable about right-to-try is how, even more than two years after the first such law passed, there is so little evidence of such activity. Gail Christopher is the only such patient I could find so far, and she appears to have been a good candidate for Expanded Access. I hope she is still alive and still having good results with PRRT.

The Goldwater Institute and other supporters promised in their pitch for right-to-try that it would provide access to experimental therapeutics to far more patients than the FDA’s Expanded Access Program, which it consistently derided as ineffective, too slow, too bureaucratic, and, at times, literally killing people. Two and a half years later, we see that for the lie that it was. That’s because the purpose of right-to-try was never to help patients (although that’s how it was sold and if it did that would be an ancillary benefit). It was to attack the FDA.

oracknows Thu, 09/08/2016 - 00:45

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Peptide Receptor Radionuclide Therapy

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Not good news.
http://www.legacy.com/obituaries/buffalonews/obituary.aspx?pid=181070640

Crap.

My condolences to the family.

Oh, geez. How did I not find that? I probably should have searched for her name + "obituary" but I didn't want to think that way and go too far down that path. I guess I was just hoping she was still alive.

@Wzrd1

Damn. So sad.

@Orac, alas, that was the search terms that I used, hoping to not find her name.

So sad to hear that. I was thinking this morning of my sister-in-law who died of cancer 6 years ago, so I truly sympathize with her family.

To be honest, I felt like a shitheel to even report her death, but, well, it had to be done.
Ask our intrepid leader on giving bad news. It has to be done.
I lack the practice on gently administering it.
Nor would I ever want to have to learn that practice.

I'm still realizing that I entirely refrained from reading DICOM imagery that I'm perfectly capable of reading of my wife's liver, after learning of her bilary cirrhosis.
I realized that late last evening, while on shift, where a DICOM viewer isn't available.
I returned home at 07:00, got distracted, it's nearly 13:00 local, still haven't reviewed the imagery.
Yeah, massive psychological block present. As I briefly reviewed the imagery for spinal issues, I suspect something is present that I'm not wanting to consciously review.
For, I know two people intimately well, to the lowest level and highest level, my wife and myself.

I've scheduled it for tomorrow to review the imagery, with intent to review the liver imagery. Complete with computer annoying me until I do, lest protective routines try to interfere.
I learned a long time ago how to overcome the natural things that one's mind puts barriers in front of.

No, it did have to be done. Actually, I screwed up in not finding that obituary when the way to find it was so obvious.

Eh, we all have an off day and miss something obvious.
I've wasted hours looking at something, but seeing what I was expecting, rather than a mistyped bit of code.

The "stories" of "right to try" web page ( http://righttotry.org/patient-stories/ ) by the Goldwater Institute is less than inspirational to me. I'm sorry if I sound like some hard-hearted bastard, but these "stories" (including a 5 y/o boy with DMD who even with current therapies should have another 15 years at least ahead of him but parents want to experiment on him anyhow) don't tell the whole story, and you're right, Orac--after 2+ years you think they'd have more to trumpet.

Resonating well with me, while I eagerly await my next echo of my abdominal aorta, which was 2.2 cm enlarged. Hit around 3 cm, things start to get interesting, hit 3.5 cm. Erm, Google Dead.

None of these stories actually used right-to-try, as far as I can tell. Some of them used FDA Expanded Access. One told of parents moving overseas to access a drug approved in another country but not the US. One told of a patient recently diagnosed with colon cancer with no mention of experimental therapeutics. Basically, this is some really thin gruel, given that it's been almost two and a half years since the first right-to-try law passed in Colorado.

I'll give them one thing, Orac.
No chance, vs slim chance.

Seriously, no chance or try, which would you try?
I'd honestly try a chance. Well, save when someone's trying to make serious money.
I'm also a realist.
An even money chance, I'd take that chance.
Not a good chance, but it's a chanceish.

popping up in various states like so much kudzu

But I'm sure you're not advocating stamping out kudzu since it shows promise as good medicine?

Alcoholism. Early research suggests that heavy drinkers who take kudzu extract for 7 days consume less beer when given a chance to drink. ...

Heart attack (myocardial infarction). Early research suggests that injecting puerarin, a chemical in kudzu, intravenously (by IV) along with usual treatment might help some people after a heart attack. Puerarin injection products are not available in North America.

http://www.webmd.com/vitamins-supplements/ingredientmono-750-kudzu.aspx…

I'd think the true intent of 'right to try' may not apply so much for pharma experimentals as it does for (herbal) treatments not available in the US.

@Gli, considering my own ethanol intake each week, perhaps a comparative survey should be in order.
I will admit to an ethanol intake that is quite literally legendary, which is obviously unhealthy. I'm astonished that my wife has a liver problem long before mine started to flag!
Although, now, I have a physician who's willing to prescribe for pain. I'm still adjusting.
Yes, dead serious. As in, 3.5+ liters of distilled spirits each and every week kind of serious.
*Finally*, pain is being addressed, but not the ethanol, I'm working that issue. Although, I can "cold turkey" it and not have anything beyond sleep disturbances, that's worrisome enough.

Or more simply, I drink more than quite a few alcoholics, habituated to it even, interrupt it, I have problems sleeping for a while.
Food is far more important. :)
Pain relief, less important than food, albeit, I'd eat a fair amount less.
Treat pain, zero high, I'd be the happiest creature on this planet. Fix the problem, I'd be in Xanadu.
Alas, insurance company regulations create problems that make me want to send a B-52 after...

My wife was just turned down for Osteoporosis injections, as there's an "oral substitute" that's far less effective.
She currently is healing from several vertebral fractures and has a pair of new fractures.
Pissed off is mild in my emotional chain right now, I'm thinking city erasure rage.
Sorry, but this just, quite literally came in.
Angry?! No, I want to vivisect someone. For anyone not knowing the term, it's dissecting an individual alive.
Which also makes me want to vomit.
I passed rage on the left, accelerated hard and found nothing.

I apologize, but, I'm at a loss, both for words and a plan.
Her spinal issues are severe, even life threatening at the beginning edge.
This crap ads in additional risk of terminal problems, due to delay of treatment.
Add in a flagging liver, secondary to an ignored gallstone condition until it became a massive problem, plus decades of APAP in every goddamned medicine, think that I'm enraged?!
I'd beat the dogcrap out of the Incredible Hulk right now.
While my mind whirls with zero ideas!

Welcome to Doctor's land. Bad news, no idea for good news, try for the best.
The reality of it is, I still am considering, hours later, how best to taste a bullet if I lose her after 34+ years.

Welcome to reality, not something you hear about, very, very real world.

I apologize, but news came in earlier today. I'm usually good at hiding such things, but, screw that.
For the third time in my life, I'm crying, the other two times was for the death of each parent.

So, please, out of some modicum of decency, take you politics out, then insert it up your ass sideways. Twice.
While I try to figure out how to move onward for our grandchildren.

I think I would gave gone with right to try when my wife was diagnosed with advanced MBC. However, after watching my sister in law struggle with a Phase I clinical trial (the drugs almost killed her; a lower dose has allowed her to return to work) as well as a friend who has survived PNT for over 10 years dealing with extremely harsh side effects of his regimen, RTT, in my opinion, would lead to premature death for most patients. Not to mention quality of life. I've certainly changed my stance on this issue.

I'm not surprised you had such a low signal-to-noise ratio looking for RTT cases on GoFundMe. Many quacks charge their patients/clients hefty sums of money for unproven treatments, too, and there are some (*cough* Stanislaw Burzynski *cough*) who deliberately try to blur the line between genuine experimental treatments and woo. Somebody has to support Stan in the lifestyle to which he has become accustomed.

Looking at the right-to-try website stories, it seems more like they are stories of people who right to try could maybe, possibly help. Maybe. Almost all of them could be equally assisted by increased FDA funding earmarked for hiring more people to handle expanded access requests so the process can be speeded up.

Wow, Wzrd1.

Add in a flagging liver, secondary to an ignored gallstone condition until it became a massive problem

http://www.lifeextension.com/magazine/2010/5/n-acetyl-cysteine/page-01

Inositol
Choline**
P-5-P (a form of b6)

**alcohol doesn't damage the liver, malabsorption of choline caused by alcohol does --

Endurance athletes and people who drink a lot of alcohol may be at risk for choline deficiency and may benefit from choline supplements. Studies on a number of different populations have found that the average intake of choline was below the adequate intake...

When deprived of choline in their diets, 73% of postmenopausal women given a placebo developed liver or muscle damage

https://en.wikipedia.org/wiki/Choline

Actually, I suspect that my hyperthyroidism is responsible for my lack of liver injury. Choline isn't the only pathway that can potentially cause problem, fat processing as well can create problems.
Still, I dealt with bones and plumbing in emergency situations, for the most part. Endocrinology lacks both. ;)

fat processing as well can create problems.

That's what the inositol is for.

Choline and myo-inositol have been shown to prevent abnormal or excessive liver accumulation of cholesterol and triglycerides in choline and myoinositol deficient rats.

http://www.ncbi.nlm.nih.gov/pubmed/7751073

http://knowledgeofhealth.com/how-simple-dietary-supplement-can-quell-mo…

NAC is availible over the counter and is what they give in the hospital for acetaminophen toxicity -- The number one cause of acute liver failure in the US. Like so much denatured alcohol, it's in every damn thing.

Indeed, APAP is in so damned many things and has caused severe injuries in the US.
Considering how narrow its therapeutic window is and how hepatotoxic it is, honestly, I'm for banning the crap.

That said, my liver function is still excellent. Surprisingly so.

I'll share this little bit of good news I noticed in the morning's articles here since it's the latest cancer related blog.

http://medicalxpress.com/news/2016-09-brain-cancer-childhood-killer.html

There are still more new cases of leukemia each year than new cases of brain cancer, but it no longer accounts for the most deaths. That's due to advances in leukemia treatment over the past few decades and because leukemia is easier than brain cancer to treat, experts said.
"Some types of leukemia that a generation ago were almost universally fatal are now almost universally treatable," said Curtin, a statistician who worked on the report.
But the rate of death from brain cancer for children has held at about the same level for at least 15 years, according to the CDC report.
The trends are similar for adults, too, according to the American Cancer Society.
Leukemia is a type of cancer that affects the blood. That makes it easier for doctors to get to it and fight it with treatments like chemotherapy.
The brain is protected by a barrier which helps keeps many dangerous chemicals—including many cancer drugs—from getting to brain tissue or brain tumors. Surgery is difficult and sometimes impossible, depending on where the tumor is located in the brain. Radiation treatment can damage the development of a child's brain.
"There's survival, and then there's survival at a price," said Dr. Katherine Warren, an expert in pediatric brain tumor research at the National Cancer Institute.
Another factor is that scientists have only recently begun to understand that pediatric brain cancers may be biologically different from adult versions, and could require different approaches to treatment.
In 2014, the brain cancer death rate was about 0.7 per 100,000 children ages 1 through 19. The leukemia death rate was about 0.6. The overall pediatric cancer death rate dropped by about a fifth between 1999 and 2014, the CDC reported, helped by the reduction in leukemia deaths.

Progress is slow but it's real.

w/r/t my post (#10), this just popped up in my email today regarding accelerated FDA approval of the first medication approved to treat DMD (Duchenne Muscular Dystrophy) : http://www.managedhealthcareconnect.com/content/fda-grants-accelerated-…

Good news (and really argues strongly against RTT)!

Dream Big: A New Year’s Resolution for Tomorrow’s Science Innovators

carlyo — Thu, 23 Jan 2014 21:43:16 +0000

Dream Big: A New Year’s Resolution for Tomorrow’s Science Innovators

By Larry Bock

Co-Founder of USA Science Science & Engineering Festival

Seemingly as fast as the speed of technology, another new year is upon us, leaving us to ponder and predict what the next 12 months will bring. You only have to view a recent issue of Popular Science which lists the top 100 innovations that occurred in 2013 to realize that 2014 will undoubtedly continue to belong to those with the courage, talent, vision and tenacity to innovate – especially in science, technology, engineering and mathematics (STEM).

So, to all you young students with the desire to be the next Elon Musk, Steve Jobs, J. Craig Venter, Shirley Ann Jackson, Sylvia Earle or Alfredo Quiñones-Hinojosa -- let me propose a New Year’s resolution for you: Dream Big! And have the confidence and perseverance to follow those dreams, despite obstacles and setbacks.

As the late Charles Vest, Ph.D., who as president of the National Academy of Engineering (NAE) and past president of the Massachusetts Institute of Technology (MIT) knew a thing or two about innovation, said, “We need the brightest minds to solve some of the toughest challenges around the globe -- challenges involving energy, water, biotechnology, climate and sustainability, and improving healthcare delivery and national security."

USA Science & Engineering Festival X-STEM School

To attract the caliber and diversity of individuals to tackle these problems, we also need to find new and creative ways to introduce students to the wonders and promise of science, technology, engineering and math (STEM), which is why the USA Science & Engineering Festival was founded.

The Festival, and its finale Expo -- the nation's largest celebration of science and engineering aimed at inspiring the next generation of innovators --is once more gearing up to assemble an unforgettable line-up of renowned and diverse innovators to demonstrate an important fact to young students: STEM is not only cool and fun, but vital to improving the quality of life for everyone in countless ways.

Join us April 26-27, 2014 at the Washington, DC Convention Center as the Festival, with Lockheed Martin serving as founding and presenting host, brings some of America’s foremost achievers in STEM –including those in space exploration, biotechnology, nanotechnology, entrepreneurial startups, robotics, green technology, Hollywood special effects, and oceanography – up close and personal for young learners.

Adding to the excitement is the Festival’s all-day X-STEM - Extreme STEM Symposium set for Thursday, April 24 at the DC Convention Center where students, K-12 educators, parents and the general public will gather for an all-day experience of workshops, live demonstrations and other hands-on interaction with leading visionaries in STEM, including:

John Holdren, Ph.D., senior advisor to President Obama on science and technology; Barrington Irving, youngest person (and first African American) to fly solo around the world, and who is now developing the first flying K-12 classroom; Melissa Rhoads, high-powered data analytics strategist at Lockheed Martin who is unlocking new ways to harness big data; Angela Belcher, Ph.D., famed MIT bioengineering visionary; J. Craig Venter, Ph.D., the scientist who led the first sequencing of the human genome; Cynthia Warner, innovator of “green crude” alternative fuel; and molecular biologist Robert Tjian, president of the powerful Howard Hughes Biomedical Institute.

Yes, the future does belong to the Innovator. Now that’s a maxim that the next generation of STEM visionaries can hitch their star to for 2014.

carlyo Thu, 01/23/2014 - 16:43

Tags

Larry Bock

USA Science & Engineering Festival

Alfredo Quiñones-Hinojosa

True "individualization" of cancer therapy

oracknows — Mon, 09 Jul 2012 02:00:09 +0000

True "individualization" of cancer therapy

One major point I've tried to make over the last few years is that the so-called "individualization" or "personalization" of treatments claimed by practitioners of "complementary and alternative medicine" (CAM) is not "individualization" at all, but rather a sham that appears superficially like individualization but in reality is not. I say that because the "individualization" promoted by CAM practitioners is not based on science and clinical trials. Another point I've been trying to make is that the true "individualization" of treatments will require science, and it will not be easy. In fact, it will be very, very hard.

This point was driven home over the weekend in an article by Gina Kolata in the New York Times entitled In Treatment for Leukemia, Glimpses of the Future. While the story is basically one long anecdote that shows what can be done when new genomic technologies are applied to cancer, it also shows why we are a very long way from the true "individualization" of cancer care. It also turns out that I've discussed the same basic story before, but here I'll try to discuss it in a bit more detail.

As hard as it is to believe, it's been nine months since Steve Jobs succumbed to a metastatic neuroendocrine cancer of the pancreas. Last November, the authorized biography of Steve Jobs, written by Walter Isaacson, revealed that after his cancer recurred for the second (and final) time Jobs became one of the first twenty people in the world to have all the genes of his cancer and his normal tissues sequenced, which was done by a collaboration of research teams at Stanford, Johns Hopkins, and the Broad Institute. At the time (2010-2011), it cost $100,000 to do. Scientists and oncologists looked at this information and used it to choose various targeted therapies for Jobs throughout the remainder of his life, and Jobs met with all his doctors and researchers from the three institutions working on the DNA from his cancer at the Four Seasons Hotel in Palo Alto to discuss the genetic signatures found in Jobs’ cancer and how best to target them. Jobs' case, as we now know, was, alas, a failure. However much Jobs' team tried to stay one step ahead of his cancer, the cancer caught up and passed whatever they could do.

Kolata's story, in contrast, appears to be that of a success. It is the story of Dr. Lukas Wartman, a recent graduate of the Washington University hematology-oncology fellowship who is now an Instructor in the Division of Oncology:

Genetics researchers at Washington University, one of the world’s leading centers for work on the human genome, were devastated. Dr. Lukas Wartman, a young, talented and beloved colleague, had the very cancer he had devoted his career to studying. He was deteriorating fast. No known treatment could save him. And no one, to their knowledge, had ever investigated the complete genetic makeup of a cancer like his.

So one day last July, Dr. Timothy Ley, associate director of the university’s genome institute, summoned his team. Why not throw everything we have at seeing if we can find a rogue gene spurring Dr. Wartman’s cancer, adult acute lymphoblastic leukemia, he asked? "It’s now or never," he recalled telling them. "We will only get one shot."

We learn later in the article that Dr. Wartman had first been diagnosed with acute lymphoblastic leukemia in 2002, when he was a fourth year medical student ready to finish up and move on to residency. During trip out to California for a job interview, he began to experience overwhelming fatigue. Upon his return, he found he couldn't run anymore and started having night sweats. At first he thought it was mono, but then he started having bone pain. He finally went to an urgent care center, where at first it was thought that he might be suffering from depression, but it was also noticed that he had a low white blood cell count.

The rest of his story can be summarized in a manner that is still too common among leukemia patients. He underwent nine months of intensive chemotherapy, which was followed by 15 months of maintenance chemotherapy. Five years later, his leukemia recurred, and he underwent a bone marrow transplantation, which is the usual treatment for recurrent ALL. Thus far, he had beaten the odds, having not realized how bad they are for recurrent ALL:

Seven months after the transplant, feeling much stronger, he went to a major cancer meeting and sat in on a session on his type of leukemia. The speaker, a renowned researcher, reported that only 4 or 5 percent of those who relapsed survived.

“My stomach turned,” Dr. Wartman said. “I will never forget the shock of hearing that number.”

In the vast majority of cases, a patient like Dr. Wartman would be dead. As is pointed out in Kolata's article, we are not even sure of the expected survival rate of someone who has relapsed twice with ALL, other than that the odds are clearly very, very low. However, Dr. Wartman was very fortunate to have friends who had access to technologies to which few have access. Because he is a researcher at the Washington University and knew Dr. Timothy Ley, a world-renowned leukemia researcher and Associate Director for Cancer Genomics for the The Genome Institute at Washington University and because he was apparently well-liked there, Dr. Ley offered to do what was described in the introduction of Kolata's article. It was a massive undertaking, as well:

Dr. Ley’s team tried a type of analysis that they had never done before. They fully sequenced the genes of both his cancer cells and healthy cells for comparison, and at the same time analyzed his RNA, a close chemical cousin to DNA, for clues to what his genes were doing.

The researchers on the project put other work aside for weeks, running one of the university’s 26 sequencing machines and supercomputer around the clock. And they found a culprit — a normal gene that was in overdrive, churning out huge amounts of a protein that appeared to be spurring the cancer’s growth.

Even better, there was a promising new drug that might shut down the malfunctioning gene — a drug that had been tested and approved only for advanced kidney cancer. Dr. Wartman became the first person ever to take it for leukemia.

And now, against all odds, his cancer is in remission and has been since last fall.

As is often the case when I'm reading an article in the lay press, I sometimes have to read a bit between the lines and make an educated guess as to what exactly it was that Dr. Ley's team did. The first analysis appears to be a next generation sequencing (NGS) analysis of both the leukemic cells and normal cells. NGS techniques allow the sequencing of complete genomes in a matter of weeks. In "old-fashioned" automated sequencing using Sanger techniques, the rate-limiting step in the sequencing process was the need to separate reaction products on a polyacrylamide gel in order for the sequence to be read. Next generation sequencing (NGS) techniques overcome this limitation by arraying DNA molecules on solid surfaces by anchoring and copying single DNA molecules on glass slides or or array of beads. Going into the details of these new sequencing techniques is beyond the scope of this particular post (maybe some day), but for interested readers who know a bit about sequencing and PCR, there is a decent general description here. The long and the short of it is that NGS techniques allow the massively parallel sequencing of a genome such that 30 gigabases of DNA sequence, which is the equivalent of approximately 10 haploid human genomes, can be obtained in a week at a cost of approximately $15,000. By way of comparison, the draft human genome reference that was reported in 2001 to six-fold redundancy took five years of sequencing by several laboratories and cost billions of dollars. That is how much technology has advanced in a single decade. It's truly astonishing.

The second analysis that was performed is almost certainly another NGS techique known as RNAseq, which is the common name for whole genome shotgun sequencing (WTSS). Again, the details of the technique are beyond the scope of this post. However, RNAseq overcomes the major limitation of cDNA microarrays, which is that it is only possible to measure the mRNAs whose sequences are known and therefore have been placed on the gene chip. Consequently, cDNA microarrays can't discover previously unknown transcript and in general do not cover noncoding RNAs, such as microRNAs and long noncoding RNAs (lncRNAs). RNAseq does. As a result, using RNAseq it is possible to identify every sequence of every mRNA transcript, coding and noncoding, being made by the cell and how much. Of course, cDNA microarray techniques are by no means dead yet, the primary reason being that RNAseq is a lot more expensive than cDNA microarray techniques, at least ten-fold more, and cDNA microarray experiments can be completed a lot faster.

Taking the results of the sequencing of the entire genome and RNAseq data and analyzing them allows scientists to probe the genome and transcriptome of cancers in a way that was never before possible. It produces an enormous amount of data, too, terabytes from a single experiment. At cancer meetings I've been to, investigators frequently refer to a "firehose" of data, petabytes in magnitude. Indeed, the sheer quantity of data from these experiments challenges the bandwidth of universities doing them, and, in fact, it's not at all uncommon for the preferred means of sending experimental data to be to load up a hard drive with the data and send it by the quaint but effective method of overnight mail to other investigators because it's faster and more reliable that way. Not surprisingly, serious computing power and major advancements in computer algorithms have been necessary to develop the methods of analyzing data from these experiments.

What I'm trying to convey is that what WUSTL did for Dr. Wartman was not a little deal. It was a big deal that took a lot of resources and effort and likely cost well over $100,000. Apparently it was paid for through research grants, and Dr. Ley claims that no patients were neglected while all that sequencing and computing firepower were transferred to sequencing Dr. Wartman's cancer genome and transcriptome, having done the same thing for a previous patient. That might well be true, but does anyone believe that Dr. Wartman would have had access to so much genomics goodness if he hadn't been a researcher at The Genome Institute? Be that as it may, Dr. Wartman's luck didn't end at having friends willing to go to such great lengths for him. Here's what happened when all that sequencing was done and analyzed:

The cancer’s DNA had, as expected, many mutations, but there was nothing to be done about them. There were no drugs to attack them.

But the other analysis, of the cancer’s RNA, was different. There was something there, something unexpected.

The RNA sequencing showed that a normal gene, FLT3, was wildly active in the leukemia cells. Its normal role is to make cells grow and proliferate. An overactive FLT3 gene might be making Dr. Wartman’s cancer cells multiply so quickly.

Even better, there was a drug, sunitinib or Sutent, approved for treating advanced kidney cancer, that inhibits FLT3.

In brief, for whatever reason, Dr. Wartman's leukemia cells appeared not to have any mutations in the FLT3 gene, which would have been found in the DNA sequencing, but for some reason (probably a mutation in a regulatory region) was making lots and lots of the kinase coded for by FLT3. FLT3 has also been implicated as a molecular target in acute myeloid leukemia (AML). Indeed, this is the very reason why sequencing the genome and transcriptome both are frequently needed to understand what is driving the cancer. Of course, as I've discussed before, the genome of your typical cancer cell is so messed up that it's impossible to identify a single gene that is primarily responsible for the cancer, but in this case Dr. Wartman was again incredibly lucky. His recurrent ALL was being driven primarily by FLT3, a single gene, and there exists a good drug to target that oncogene. Even better, as predicted by the biology, treating Dr. Wartman with sunitinib worked! His blood cell counts started to normalize within days, and he rapidly went into remission.

There was a hitch, however. Sunitinib is very, expensive ($330 per day), and Dr. Wartman's insurance company wouldn't pay for it, given that it was being used off-label. Basically, Dr. Wartman scraped together enough money to buy a week's worth of the drug, and that's what demonstrated such remarkable effects. Later, the doctors in his division pitched in to buy him more drug. After a few weeks, Dr. Wartman was in complete remission. Fantastic news, but it presented a dilemma: Should Dr. Wartman keep taking the drug, or should he undergo another bone marrow transplant? Ultimately, the decision was made to do another bone marrow transplant because of fear that the leukemia would soon evolve resistance. When evolution meets modern medicine, evolution nearly always wins. In another stroke of luck, Pfizer decided to supply Dr. Wartman with the drug free of charge until he underwent a bone marrow transplant. As of the running of the story, Dr. Wartman remains, as far as the best tools of modern medicine can tell, free of cancer, although he is suffering from graft versus host disease due to his transplant.

There's no doubt that "individualized" medicine will become increasingly a part of modern medical care, with the individualization based on sequencing the genomes and transcriptomes of patients. In just a few years, the price of a complete genome sequence has fallen from hundreds of thousands of dollars to around $15,000. True, that doesn't count all the analysis and that's $15,000 per genome, which means at least $30,000 to sequence a normal and cancerous genome. There are, however, lots of things we do in medicine that cost $15,000. The price doesn't have to come down much more before whole genome sequencing starts to look doable for individual patients. After all, gene tests like the OncoType DX cost on the order of $3,000 to $4,000, and we now order this test fairly routinely for patients with estrogen receptor-positive, node-negative breast cancer because in the end it saves a lot of patients from unnecessary chemotherapy.

The problem with the individualization of care based on genomics are well-illustrated in this article, which, let's not forget, is nothing more than anecdote. The question of its generalizability remains to be determined. Using genomics to individualize treatment worked in Dr. Wartman's case. What his odds of long-term survival are now, no one really knows, but we do know this much. There's little doubt that, without the discovery that sunitinib would be an appropriate drug to treat his cancer, he would almost certainly be dead by now. Unfortunately, his example can be countered with that of Steve Jobs, whom sequencing his tumor ultimately didn't help, and Christopher Hitchens, who according to this article also had his cancer sequenced.

How many will have results like Dr. Wartman's and how many will have results like those of Steve Jobs or Christopher Hitchens? Most cancers are not driven by just one gene that can be targeted, nor are most other diseases and conditions that we might wish to use genome and transcriptome sequencing as a guide to therapy. We're drowning in genomic data right now, and we just don't know how to use it yet. Nor will we know until a lot more research is done. The problem is that, with a relatively few exceptions like the case of Dr. Wartman, we don't know enough yet to translate genome and transcriptome sequences into therapies. We also don't have drugs for anywhere near all the potential molecular targets that can be identified this way, and the targeted drugs that we do have tend to be enormously expensive. For all the promise it shows and for the now occasional success story like that of Dr. Wartman, the genomics revolution will, like most revolutions, be messy.

oracknows Sun, 07/08/2012 - 22:00

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Free Thought

in fact, it’s not at all uncommon for the preferred means of sending experimental data to be to load up a hard drive with the data and send it by the quaint but effective method of overnight mail to other investigators because it’s faster and more reliable that way.

Heh, it reminds me of a quote I heard at one point, can't remember who it was attribute to, that still nothing can beat the bandwidth of a Volkswagen loaded up with tapes (that dates the quote for ya, eh?). The same sentient is true today.

Well, there is a two fold problem with individualized cancer care. There is the cost of sequencing, which would go down rapidly if it was used diagnostically. Then there is also the problem of drug availability. In a study done on 12 cancer patients RNAseq found good molecular targets in all 12, but only 3 of those targets actually had a drug available for treatment. All three were for treating different types of cancers than the ones the patient was suffer from and one was even contraindicated for the type of cancer because it usually makes it worse . So, not only will it take time for sequencing to be economical enough to be useful, once it does we still have the problem of not enough drugs for the proper molecular targets.

Wow. Dr. Wartman's colleagues must have really liked him. I can't imagine they have all that many sequencing machines lying around. Not to mention the time of lab techs and assistants working on crunching the data that comes out!

This is definitely not something that your average Joe is going to have access to. Heck, even those who do have the money might not be able to get this level of attention without the right connections.

It would be great to see technology advance far enough that we wouldn't blink at processing petabytes of data, but that's quite a ways off, I imagine.

Just reread and caught the "26 sequencing machines". So, they do have quite a few, but that's still a significant use of resources.

Trying to figure out the resources necessary to apply this to even a small fraction of the Cancer community - and it boggles the mind. The technology exist to do this on a very small (and expensive) scale, but to think of the hundreds of thousands of individuals who would want this, plus that not every Cancer is going to be as accommodating....well, sounds like a great way to get peoples' hopes up, but little else at this point.

I'd say by the end of the decade we should have the tech to reliably process petabytes of information in reasonable timeframes.

After that, I couldn't guess when it all translates into effective clinical therapies. Another decade or two, perhaps?

thanks for the breakdown.

I saw the story and didn't read the details because I suspected I'd find the usual media coverage of a technical medical issue. Your work is as great as ever.

Thanks again

@James Sweet

You beat me to it. It's an old IT adage that predates the Internet as we know it. There are a number of variations, but the one I remember hearing first was "Never underestimate the bandwidth of a station wagon loaded with backup tapes."

More on-topic though, it's actually heartening to hear of this kind of success. Individualized treatment really is possible, at least in some cases. But here, the difference between Quacks making the claim and scientists actually making it happen is that the scientists really DO make it happen.

Expensive as hell, in resources and monetary terms, but real.

The only thing the Quacks share is the expensive part.

@ James Sweet

Re:

in fact, it’s not at all uncommon for the preferred means of sending experimental data to be to load up a hard drive with the data and send it by the quaint but effective method of overnight mail to other investigators because it’s faster and more reliable that way.

As usual, xkcd touched on this.

On a project I was on, we actually did this. For reasons I'm not going to go into, our download time was pathetic to try to get this tool we needed, so one guy went home, downloaded the piece of software on his home computer, burned it to a CD, and then drove back to work with it. He beat the original download. :-D

http://en.wikipedia.org/wiki/IP_over_Avian_Carriers#Other_avian_data_tr…

PigeonNet (and the earlier StationWagonNet and SneakerNet) transfer protocols can still beat some modern carriers in unusual circumstances.

That being said, we should keep in mind that technology gets better and cheaper as development goes on; air travel was a risky sport for the ultra-rich when the Montgolfier brothers were wowing crowds, but now it's all-but taken for granted. In a decade or two the sort of gene sequencing described in the article could very well be practical for front-line medicine. *fingers crossed*

-- Steve

Before Sneakernet, there was "telegraph, telephone, tell-the-neighborhood-gossip" and air freight/other couriers before there was FedEx.

In its way this could be a glimpse of the future. What is sad is that purveyors of woo will glean bits and pieces out of this, offer an "alternate" (bogus) process to make it sound like they are doing the same thing and make their woo-filled suggestions based on "cutting edge" technology.

One thing I've noticed is that a lot of the more realistic-sounding woo treatments/cures are often based on research from one promising case or from a small in vitro study. They take a supplement, etc., and run with it, selling it based on that information even when later studies cannot replicate original results or it is determined that dosage has to be too high to be safe.

I fully expect some alternative health people to take this one article and use it to create (or in Dr. B's case, further support) their treatments and their "every one is unique and needs unique treatment" mantra.

This man was incredibly lucky. In a different place in life (say a co-manager at Walmart) he would have had a death sentence and collections would be being made for the family. He definitely had a lot of things coming together to provide this for him.

Ah, sneakernet....

We had a lab where that was implemented as the sole transfer protocol, and added USB ports to the test stations specifically to support it. (This was to remove the interference of IT pushing out upgrades and patches to the OS that didn't actually belong to them -- this was customer hardware.) Logs were usually put on USB sticks; software was delivered via CD. As the build manager, I went through a whole lotta CDs.

As usual, I have nothing practical to add to the discussion. But I do have an observation.
Sunitinib backwards reads 'bin it in us'

Hardly reassuring if you're a Brit who happens to have the rarely useful talent of reading backwards.

I'm a researcher at a major sequencing center working on many, many NGS projects for medical applications. I can tell you that this technology is coming, and in many ways it's already here. Currently there are several RCTs underway that directly measure the difference in outcomes between patients who receive WXS and those who don't. I'm involved in a couple of these, notably one for patients with colon cancer. This is coming folks, sooner than you think.

Just reread and caught the “26 sequencing machines”. So, they do have quite a few, but that’s still a significant use of resources.

As an aside, I can tell you from personal experience that this isn't really true. The article paints this as a major undertaking and use of resources, but in reality this sort of stuff happens all the time at sequencing centers. Extra sequencing space comes up pretty often due to the way sample prep is done, and pet projects like this get thrown into the extra space.

AdamG:

I’m a researcher at a major sequencing center working on many, many NGS projects for medical applications.

And when we went to the medical geneticist at the Medical Center (and her other office at the EEU), my son's blood was sent to Maryland. Perhaps it has to do with the specific genes for the genetic diagnosis. Who knows?

Chris, this is pretty common for routine clinical tests involving small numbers of genes. Do you know if the sample was sent to a clinical testing company or to a research institution? It also depends on how recently this was...UWMC has really stepped up its CLIA sequencing load in the past year or two through our lab and our affiliates.

Sheet of paper with results in front of me: Gene Dx, a search for eighteen known genes causing hypertrophic cardiomyopathy.

None of the known ones were found, but they encouraged us to pay for full panel. Um, we declined since there is no known genetic treatment. It was best to surgically remove the extra heart muscle.

Ah that makes sense, I know GeneDX is based out of a large facility near the NIH in Bethesda.

You might be interested to know that there is a lot of work being done right now on HCM genetics, even right here in Seattle. Our lab is very involved with one of the largest sequencing efforts to date. A part of this project is looking at how rare variation in known HCM candidate genes and novel candidates contribute to the phenotype. There are some really cool findings that I can't discuss here yet, but the papers are on their way out!

For more info on this project, and to browse 6500 exomes worth of data, check out our site:
http://evs.gs.washington.edu/EVS/

Thanks a bunch for the extra info on the company. We did discuss that his blood sample would be held there as extra data for any research. Plus we agreed that if they needed more samples from my son we would be glad to provide it.

The UW cardiologist and the geneticist have plans to set up a special HCM clinic. The geneticist wondered if there was a relationship between the heart issues and my son's history of seizures and speech issues. She also researches autism genetics.

We figure that genetics medicine is still heavily in the data collection stage. (We were also encouraged by the clinic in Minnesota to get the full genetic panel, they want data too!)

Sorry off topic, Trine Tsouderos up on Trib re Durbin response to her excellent article on sleazy supplements and the scammers that make them.

http://www.chicagotribune.com/news/chi-120709dietary-supplements,0,2880…

Newbie question, is it possible for me to get my entire genome (or exome)? I know about 23andme but I'd also like to contribute to a research team.

A.L.

Unfortunately no, A.L., you can't get your exome or genome done yet, 23andMe is as close as you can get right now. Even subjects who are enrolled in genome/exome studies are unable to obtain their raw data due to issues with incidental findings and liability.

Personal exomes are coming soon though! 23andMe is about to roll out their massive $1000 exome initiative...stay tuned.

https://www.23andme.com/exome/

When I began having symptoms of neurological deficits, I wanted to be tested for a hereditary illness that runs in my family. My father is dead, so I asked his widow which genetic abnormality he had. His sister also has the illness, so I asked her as well. They both answered with different genetic abnormalities. The testing center wanted $750 per genetic abnormality to do the testing. The cost was prohibitive and there was no treatment at that point except dealing with symptoms. The neurologist also assured me that I didn't want to be "tagged" with that diagnosis so early in life because it would make me uninsurable. With another ten years or so that I might be able to get by and no treatment available anyhow, he counseled not pursuing diagnosis at that time.

Nice to know that it's getting cheaper to look for what's causing the problems. If I keep developing new symptoms I can reinvestigate what is causing them and maybe have them do a broader test for a similar or (less expensive) "look."

I had some genes sequenced when they were trying to figure out why I kept having problems with low blood sugar. They knew it was from fructose malabsorption disorder, but they found that I was also not absorbing sucrose which is usually not a problem because their is enough glucose in it to pull it in. My insurance company paid 95% for the testing, even though the only place that offers it here is out of my network. It ended up costing me $275 and didn't really answer any questions.

Was that recently, Sullivan? When we came to "what to test for" I was told $750 for each test. My father's widow was adamant that he had one genetic version of the illness, but his sister, who has the disease assured me that Johns Hopkins did her diagnosis and it was different mutation.

I didn't like the idea of almost $1000 and not knowing for sure if I was even testing for the right disorder.

Mrs. Woo, the cost depends on how many genes they are looking for. If there are fewer things to look for, the cost is less.

Perhaps, like the 18 genetic sequences known to cause my son's heart problem, there may be several more known to cause Sullivan's blood sugar issues.

This is mostly OT, but it's about cancer in general, so not completely OT.

More bad news about Jacob Steieler refusing chemotherapy:

http://www.woodtv.com/dpp/news/local/grand_rapids/parents-v-som-over-so…

Jacob is ten. He can't imagine anything worse than chemo. At ten he should not be able to. At my age and with my life experience I know here are things that are worse than chemo.
So his parents asked him and he didn't want to do any more chemo. He does not have the life experience to make that decision.
It is not the same as asking him if he wants spinach or Twinkies for dinner. Both decisions a ten year old boy would be likely to make would probably have bad consequences but not of the same magnitude.
The comments reflect the staggering lack of knowledge that most people have about cancer and chemo.

A little late as usual...
Great write up Orac. I so love it when you go all molec bio/biotech. (smiley showing lot's of teeth)

Bah..lots
Free apostrophe there if anyone wants it.

@Chris - I quit following how many genetic variants they found that cause this. There were the two different ones reported by my father's widow and his sister and at least another 14 more I think, but the numbers began having space in between them like researchers suspected there were other places it would show up and that the order they would list them ultimately would make more sense if they didn't do it by date the researchers found a new trinucleotide repeat that didn't belong.

Oh Rose. That is terrible. I can imagine how hard it is for a parent to watch their child go through the cancer diagnosis, treatment, etc. An experience recently, though, brings home exactly how much difference there is between the view of a child vs. an experienced adult:

My son's girlfriend somehow got a razor blade underneath her one fingernail cleaning the bathroom. She's 13. When they asked her how much pain she was when she went to the emergency room (with my history of taping myself back together here and there after a good solid cleaning and some antibiotic ointment, I really had to marvel that her mother took her to the ER for something like that) she told them on a scale of 1 to 10 she was an "eleven." Hyperbole aside, as someone who has had a few more painful episodes in my life than the girl, I would have probably put a similar thing at a three. I know it can hurt, but it's not that terrible, especially if you've done natural child birth, broken a few bones here and there (including a nose), etc. When she left, they asked her again what it was and she told them down to a seven.

Now, if she had been someone who was severely injured, that kind of response would merit some kind of pain medication; however, doctors and nurses both kind of took her numbers with a grain of salt. I realized suddenly that the girl has had a pretty kind life if at 13 she is saying a cut under her fingernail equals an 11 on a 1-10 pain scale.

So kids definitely cannot fathom what a life-changing decision choosing that chemo is "too tough" can really be. They cannot see that a year of misery and a lifetime of remission (hopefully) is better than a year of misery followed by death. It is a very hard thing for an adult or a child - I am not minimizing the misery of the treatment (though it depends on the treatment these days too). Having to go through the hard things because of the possible end results is something that doesn't make much sense to a child who will also think having to go without television for a week might be the end of the world, or that graduating from high school is too far away to ever imagine getting there.

That's why we parents were created - to take over and make decisions based on our experiences and to educate our children based on them. I can't believe the parents don't have a bit more stick-to-it-iveness themselves - I would be scared to death of my child dying, even moreso if I skipped finishing science based treatment. If they died as a result I could never forgive myself.

Now, if she had been someone who was severely injured, that kind of response would merit some kind of pain medication; however, doctors and nurses both kind of took her numbers with a grain of salt.

I found involuntarily screaming when something was moved the wrong way to be a pretty effective communication technique in this regard. (The 4 mg of subcutaneous morphine didn't really do it, either.)

@Narad - I had to take a deep breath and look away at her "seven" - I didn't want anything on my face to show any kind of amusement - I wasn't amused that she hurt, but very amused at how high her numbers were, and immediately realized it was life experience that made the difference.

A neighbor actually called and begged me to ask for pain management at one point in my disease journey. After all the horror stories I read on the internet about being treated as a drug-seeker, etc., I was waiting to be involuntarily writhing on the floor in agony before being willing to hope I would be treated as someone with a valid complaint. When the pain would get bad I would change color and the top of my upper lip and a few other discrete patches on my face would begin sweating. My blood pressure had also gone up higher than normal once things got really bad. However, since I still was too reserved to fall screaming on the floor, I assured myself it "wasn't that bad." I haven't had it get that bad (to involuntary screaming) yet. There have been times when I have temporarily doubled over no matter how much I tried to stay erect, but no screaming.

I know my idea of a seven was much different than this girl's idea of a seven. I was lucky - I found a functional pain scale by a support organization for my illness. It didn't just give you numbers - it described how you would have to modify activity to work around the pain levels. That one helps me a lot more with being honest or at least being consistent, because I'm a rare person that tends to downplay my pain (must be part of that older generation - though nowhere near as amazing as Mr Woo's aunt, who had a farm truck accidentally back over both of her legs and was so ticked off to have let herself get into the situation that she insisted on walking to her house (not making this up) and taking a bath first before allowing her husband to take her to the ER). She had broken both of her legs. That woman is probably tougher than me, and there aren't a lot of people I have met in person that I would say that about.

Don't mind me...just after a cookie. Laptop housekeeping time.

Steve Jobs vs. Bill Gates

oracknows — Thu, 14 Jun 2012 07:55:26 +0000

Steve Jobs vs. Bill Gates

One of my favorite YouTube channels is Epic Rap Battes of History. Some of my favorite battles include Darth Vader vs. Adolf Hitler (and, of course, the rematch), Mr. T vs. Mr. Rogers (hilarious!), Napoleon vs. Napoleon, Gandalf vs. Dumbledore, and, of course, my favorite of all time, Albert Einstein vs. Stephen Hawking. However, just this morning I got a notification that the boys had finally posted a rap battle we've all been waiting for, one that I'm surprised they didn't do a long time ago. That's right: Steve Jobs vs. Bill Gates.

Apple vs. PC vs. Linux. Discuss. Yeah, I know. It's a cheap, lazy, and obvious way to keep my blog active on a day after I was up late working on grants and didn't have time to lay down some proper Insolence. You'll just have to deal with it, I'm afraid. Grant crunch time consumes all, even this blog. Fortunately, I'll have a couple of days now where I can't do much writing as I wait for co-investigators and collaborators to weigh in.

As for my allegiances, all I can say is one word about the new retina display MacBook Pro: Want. Bad. (I know, that's two words.)

oracknows Thu, 06/14/2012 - 03:55

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Epic Rap Battles of History

Apple vs. PC vs Linux:

They all stink, each in its own, uniquely fetid way. I say that as someone who has at least one of each within arm's reach at this moment. On the other hand, each one is very good for certain tasks in certain places.

Fanboi-ism in IT really chaps my butt. In my career I've seen so many of these technology "debates" that I just yawn when I hear that something "... is the greatest ever -- it's going to bury the old stuff." Mainframe vs PC? FORTRAN vs. PL/1 vs. C? How 'bout C vs. Objective C vs. C++? Or C++ vs. Java. Or Ruby vs. Perl vs. Python?

Where all of this causes problems is when the fanboi tries to use a tool (platform, language, whatever) because it's the favorite and not because it's the right choice for the job. I see too much where people try to fit the problem to the tool, instead of the tool to the problem.

"If your only tool is a hammer, every problem looks like a nail."

I generally prefer Windows, but I'm typing on a Mac. I enjoy programming, gaming, and film editing and graphic design. The new one Orac linked to costs less than my current MacBook Pro cost in 2008, and I can't afford to buy another computer, so in another five years when I need another computer I'll probably be able to buy a much better computer for that price.

They should have brought Linus Torvalds into it, cuz he'd kick all of their asses

I'm a pretty anti-Apple person, but not beholden to it (I searched out Creative mp3 players just to avoid the iPod/Zune stuff). I love my iPad, tho. I've only had it a week and I feel like I would be lost without it.

I thought this was going to be an article on how the evil monster Bill Gates is spending his time and fortune saving kids in Africa while the savior Steve Jobs (while he was with us) spent his time crushing open access and choosing magic over medicine to treat his illness.

All software sucks. All hardware sucks (except vacuum cleaners.)

That said, my feelings on Apple is similar to my feelings about Jesus -- I dont mind either one, its their fan clubs that piss me off.

Bill Gates vs Steve Jobs? Bah, I remember when it was Commodore vs Atari. Seriously though, I'm strictly utilitarian - whatever works, works. I tend to use PCs with Windows, because I'm somewhat of a tinkerer and while you can mod Apples, it's not exactly as simple and cheap like making PC to do exactly what you want it to do. Lately I also found myself using Android more and more, and found it surprisingly malleable.

As for Bill Gates, I have to admit that I wasn't big fan and some of his business practices were off putting, but after all he already did, in my book he's a good guy. And if he provide at least half of what he plan to do, we might have a pretty good shot on eliminating polio. As a lifetime achievement, you can't get much better than that.

In a long career in the computer industry I never used an Apple product. Now, in retirement, I'll be happy if I never have to use anything but my iPad.

FORTRAN vs. PL/1 vs. C? How ’bout C vs. Objective C vs. C++? Or C++ vs. Java. Or Ruby vs. Perl vs. Python?

I would take APL over any of these choices. It's purty. (I believe the Census Bureau somewhat amazingly used it at least into the mid-'90s, as well.)

Daughter had last final of high school today so I treated her to very late lunch at a favorite spot, and then she reminded me that on the way home we would go by a shopping mall that was having a sale. Le Sigh. At least she did not buy shoes.

I saw the new MacBook Pro at the Apple store, which is right across the parking lot from the Microsoft store. Makes for fun comparisons, but I have not bought anything from either store.

For the record: I have never owned an Apple product so I don't really know anything about them; I perhaps have a bit of loyalty to Gates' company because I inherited investments in it and I support his foundation's work. I use a computer to look things up and for writing: that's it. Nothing fancy.

By pure accident, I learned today that one of my mutuals had *mucho dinaro* successfully invested in Apple: so I guess I should now have divided loyalties. but certainly not 50/50.

My husband has an analogy: Apple is like the rounded-tip scissors you use in preschool, very simple and you can't hurt yourself. PC is a nice, sharp pair of Fiskars. It is the pair you use when you know how to cut things and need more control. Linux is like your mother's pair of 12" fabric shears that she keeps polished in her sewing case. Only in the right and capable hands...

oh well.... I repaired windows PC for a living, made a few Linux server boxes and used Linux extensively over the year and have a few hours of mac experience. They all suck....

now, my main compute box has a kitchen sink mainboard where the cpu is soldered on and the graphic chip is embedded in the cpu (amd zacate 1.6ghz, similar to an intel atom) for which I slapped on two stick of 4 gig of ram and a 20$ pata raid card (sata disks are too expensive and I had old pata drives lying around) and finally, I downloaded windows 8 to throw on that box; it run fine.

A.L.

p.s. as for myself, I'm changing career, I don't want to f*ck around computers.

NARAD @8:18 PM -- APL!? Talk about a blast from the past!

I met Ken Iverson once. It's a long story.

Talk about a blast from the past!

It was grand. However, it left me with a distinct proclivity toward doing unusual things with Lisp 'mapcar'. It's even better than Reiki, as the odd symbols actually do something.

Oh, and...

I met Ken Iverson once. It’s a long story.

I've gotten drunk with Phil Agre. Also a long story. Great guy.

As far as people go, Gates is by far the better human being. That says nothing about his business practices and everything about what he's done since leaving Microsoft.

Wow, what are the chances of meeting multiple other APL fans...

APL was the first computer language I learned, thanks to an uncle with University computer access back in the mid-70s who was rather fond of the language. He used to bring over an IBM thermal paper terminal with an acoustic modem on the back and teach me how to program. It's warped my view of computing ever since.

In my Numerical Methods course at University, I submitted one assignment of about thirty lines of Fortran code... and followed it up with a one-line version in APL, just because I could.

Never met Iverson, but have been at the Quote-Quad office at U of Waterloo.

Yesterday I tried to burn files to DVD that was opened in another application in Windows, and it didn't like that.
Thanks guys.

saying: “… is the greatest ever — it’s going to bury the old stuff.” isn't fanboi-ism.

Get your terms right before you start whining about them, m'kay?

When someone says "Microsoft invented home computing" or "Apple were the first smartphone company", THAT is a fanboi talking.

When someone REFUSES to believe that Linux crashes a computer, when someone refuses to believe Microsoft has a monopoly, when someone refuses to believe that people have a legitimate gripe against Apple, then that's famboi-ism.

"They should have brought Linus Torvalds into it, cuz he’d kick all of their asses"

Nah, he'd get his wife to do that.

My husband has an analogy: Apple is like the rounded-tip scissors you use in preschool, very simple and you can’t hurt yourself. PC is a nice, sharp pair of Fiskars. It is the pair you use when you know how to cut things and need more control. Linux is like your mother’s pair of 12″ fabric shears that she keeps polished in her sewing case. Only in the right and capable hands…

It's not a great analogy. OS X has a fairly normal BSD under the hood; I use it extensively. And really, a lot of the Linux types can't even figure out how to compile from source. What massively disappoints me about OS X is that it's still a step down from NeXTstep. (Yes, I still have one. Speaking of weird coincidences, last summer, I found a NeXT CD-ROM drive in the dumpster. Turns out a guy moving out from the other side of the building had also put out a complete, working mono station that was no doubt snatched by the junk pickers who drive up and down the alley looking for scrap.)

I use Windows, though for some things Apple is often considered the way to go. In music and webdesign Apple seems to be the tool of choice. Alas I don't have the money to switch to Apple and I have some other issues with them. Like they are harder to obtain, though this has changed a bit. Besides switching to Apple means buying a lot of new software and some of it, like Dreamweaver, is pretty expensive.

I have worked with computers for more than 25 years.
My first computer was a ZX Spectrum, though I hardly did anything with it.
My first real computer was a Commodore Amiga
Later I bought an Atari
Than I also started to work with an MS-Dos machine and switched to Windows.

I'm cool with Windows and Mac (though I'm mighty sick of running XP). What's not cool is when you have a technical program that only runs on one platform (say, a scientific analysis software), and the IT department refuses to support your computer because the rest of the company runs on the other platform.

Look, it's not like I picked this software (FloJo) that only runs on Macs because I want to make your life difficult. I picked it because it's the only decent software for what I need to do to do my job. Bah.

I LOVE ERBII!!

MS and Apple aren't even in the same industry. The former sells tools, and the latter sells a lifestyle.

a lot of the Linux types can’t even figure out how to compile from source

I used to be a Linux type but I knew early on how to compile softwares despite having no formal training or even much informal training. I was part of the team trying to port debian to the arm based corel netwinder machines.

A.L.

That rap battle was one of the better ones (just watched Mr T vs Mr Rogers and that was good too).

I have no allegiance. I use whatever works and whatever has the best deals. Have MS laptops and Apple iPad/iPod touch, but only have the latter because there were good deals ($100 off one, and $50 trade in on a hand-me-down model with 30 min of battery life). Probably will eventually jailbreak the iPad just because its limitations are starting to annoy me now (or just because). I'm hoping with Jobs out of the picture, Apple will move away from their control issues.

Btw, read half the Jobs biography at my brother's place. At the halfway point I was sorry I'd bought an iPad. Jobs was just a bully, and if he couldn't bully, he'd take temper tantrums, even cry to get his way. Even now, I sort of wish I'd bought something Android-based just because of how off-putting Jobs was. Maybe he redeemed himself somehow in the latter half of the book but by that time I had no interest in knowing anything more about him.

Mac vs PC? Who cares, but I love epic rap battles and think it's awesome you post them! Nice Peter ( the guy who does them) is great and has lots of amusing music. Thanks for posting!

Since I can't sleep, I'll offer another Apple grumble: it appears to be completely impossible to fully and finally take an internal drive offline on a PowerBook (yeah, yeah, I know) without hand tools. You can prune the thing right out of the firmware device tree, and it will randomly pop back in and pretend it ain't heard nuthin' 'bout no other disks on reboot and start ringing for the butler. Give me a break. The battery will tell you its life story and immediately pass out on the floor, but the drive has to be plied for the slightest detail and refuses to just die.

Tinker and Change the World

carlyo — Mon, 30 Jan 2012 09:00:00 +0000

Tinker and Change the World

By Larry Bock
Founder and organizer, USA Science & Engineering Festival

Tinkering -- that hands-on, garage-based tradition which sparked inventions ranging from the airplane and electric light bulb to the Apple computer -- is making a comeback among average Americans, promising to change our lives for the better on several fronts.

Known by such monikers as DIY (Do It Yourself) and the Maker Movement, its resurrection, fueled by the current economic downturn and the falling cost of high-tech tools and materials, stands not only to boost innovation and change how science is taught in the classroom, but could herald a new industrial revolution, suggest the Economist, the Wall Street Journal and other luminaries.

The potential power of this movement is indeed thought-provoking. It rests on DIYers (who range from young students to everyday adults) believing that the average person has the ability to understand and apply technology in ways like never before, enabling ordinary individuals to build, even invent, meaningful creations of their own that they are passionate about -- from robots and sophisticated LED (light emitting diode) systems for movie film production to energy-smart conveniences for the home.

Through robust support networks that they've developed nationwide, DIYers delight in joining with like-minded friends, mentors and peers (either online or in-person) to tinker, create, hack and re-use materials, while learning to use such tools as computer-controlled table saws, 3-D printers, welding equipment and laser cutters to produce prototypes of their creations.

For me, as founder and chief organizer of the USA Science & Engineering Festival (the nation's largest celebration of science and engineering), the merging of DIY with technology represents a vibrant breath of fresh air across America, particularly what it means for inspiring the next generation of innovators. And I am not alone: Educators are realizing that hands-on experiences represented by such activities as tinkering and building may be one of the most powerful keys to improving STEM (science, technology, engineering and mathematics education) in this country. That's because students learn best by doing, especially when done in an engaging environment with peers and mentors.

Not surprisingly, engineering schools across the country, for example, report that undergrad students are showing an enthusiasm for hands-on work in DIY technology activities that hasn't been seen in years.

DIY also cannot help but to have a positive impact on the human spirit itself, says Naomi Lamoreaux, an economic historian at the University of California, Los Angeles. "The really dynamic times in our history are times when you have lots of ordinary people who think they have a chance to make a difference," she opines.

Yes, the chance to make a difference is indeed a powerful motivator, especially for young students. That is why the USA Science & Engineering Festival hosted by Lockheed Martin this April is devoting a significant portion of the event to exciting, hands-on DIY encounters -- all designed to inspire budding inventors and entrepreneurs with ideas, tools and resources to help them make their dreams a reality. From robotic technology to amazing desktop manufacturing technology that makes prototype development easy and cost-effective, future innovators will find it all during the Festival's finale Expo (as well as in the Robot Fest and DIY Expo pavilion) in Washington, DC on April 28-29.

The Festival is also a fantastic place for technical experts of all kinds to learn about the amazing advances that have been made in technology to help them make product prototypes find designs online for parts and components, and meet an array of experts to help them bring their product ideas to life.

Participants and activities such as the following will make the Festival an unforgettable one-stop experience in DIY:

--Organizations like MakerBot Industries, Fab Lab DC and Fab@Home by Cornell University and Dassault SystÃ¨mes Americas will demonstrate how to develop product prototypes via digital fabrication and 3D printers, while Sparkfun Electronics will show how to develop new product ideas more easily and inexpensively through electronics and microcontroller kits. The Festival will also feature an array of robotic technology ranging from military, manufacturing and surgical robots to more entertaining robots like R2DC's Star Wars droids and other exhibits that allow attendees to build their own robots.

--At the DIY Expo, budding entrepreneurs will be able to network with members of various "hackerspace" groups, such as the Baltimore Node, Unallocated Space and HacDC, who work collaboratively to network, socialize and develop technical solutions and new innovative products in their spare time, simply because they love to tinker with new ideas, create something from nothing, and solve problems!

--In addition, the Festival also features a Book Fair that includes some of the leading authors and experts in the DIY world, including William Gurstelle, author of The Practical Pyromaniac. Gurstelle, a professional engineer, has been researching and building model catapults, ballistic devices and flamethrowers for more than 30 years. Dustyn Roberts, author of Making Things Move: DIY Mechanisms for Inventors, Hobbyists and Artists, will also appear at the Festival. Roberts, also an engineer, started her career at Honeybee Robotics working on a project for NASA's Mars Science Laboratory mission.

The late Steve Jobs (who was perhaps the ultimate modern-day DIYer), was right when he said individuals who invent, build and make things have the power to change the
world -- or at least a part of it.

carlyo Mon, 01/30/2012 - 04:00

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Nicholas Gonzalez on Steve Jobs: If only he had come to see me...

oracknows — Mon, 10 Oct 2011 01:00:00 +0000

Nicholas Gonzalez on Steve Jobs: If only he had come to see me...

I debated a while about whether I should take this particular post on. It's not because there isn't a lot of fodder there deserving of that special form of not-so-Respectful Insolence that only Orac, in his usual inimitable fashion, can provide. There most definitely is. The problem, as is sometimes the case when I get on a roll, is that it represents going back to a topic that I've already covered very recently. In fact, it's a topic I've already covered twice, namely Steve Jobs and the insulinoma that ultimately killed him. Last week, I reposted what I wrote about him back in 2009 after he underwent his liver transplant, and then lambasted quack and skeptic alike for their appropriation of Jobs' story to try to make a point. In particular, a post by all-purpose quackery promoter Mike Adams irritated me because he did what he predictably does after the death of any famous person and tried to point to it as "proof" that conventional medicine killed him. After that post, I thought I was done and could move on to other topics.

Little did I know that Joe Mercola had other ideas; so I guess I'll take one more bite at the Apple. (Sorry, I know that was horrible pun. I don't know what came over me.) Then I'll move on tomorrow. I promise; that is, unless someone tops both Mercola and Adams. Then all bets are off.

Yes, Mike Adams' main competitor for the title of King of Internet Quackery (in my opinion, of course) couldn't let Adams have all the fun or monopolize the cranks' effort to co-opt the story of Steve Jobs' cancer to their ends. If Adams had a rant blaming conventional medicine for Jobs' death and asserting that Jobs could have been saved if only he had used "alternative" remedies instead of that nasty surgery, radiation, liver transplant, and chemotherapy, then Mercola has to do him one better and publish not just a long article saying in essence the same thing but do an interview with Dr. Nicholas Gonzalez as well using Jobs' story as a jumping off point to promote quackery.

You remember Dr. Gonzalez, don't you? He's the creator of the (in)famous Gonzalez protocol for pancreatic cancer. This protocol involves various vegetable and fruit juices, meat extracts, supplement pills by the handful, and, to top it all off, at least daily coffee enemas. Well, it turns out that Gonzalez thinks he could have saved Steve Jobs. Not only that, but he thinks various cancer ~~quacks~~ alternative practitioners (like himself) have been unfairly vilified by physicians, scientists, and the press. You can see his interview and read it all in Mercola's article from yesterday entitled A Tragic Decision That May Have Cost Steve Jobs His Life? Here's the video:

It's a long video and a long interview, full of broadsides against conventional medicine and boasts of the number of celebrities who have come to Dr. Gonzalez for consultations. Even though I will quote it extensively, what I quote will be but a small, small fraction of what is there.

Mercola first passes judgment on the decision to undertake a liver transplant:

This is not routinely done for two primary reasons. The first is that it in no way, shape, or form addresses the original cancer, and it can easily spread to the new liver. But more importantly, he had to be placed on large doses of drugs to suppress his immune system so he would not reject his new liver. Tragically this is the very system your body uses to help control cancers. The liver has enormous regenerative capacity, and if they only removed the portion of his liver that contained the malignant cells, he would not have to take those dangerous anti-rejection drugs.

Conventional cancer experts disagree with the approach that was taken for Steve.

" In contrast, with a liver transplant "the overall costs and complications ... override its benefits, especially when compared with partial [removal of the liver]." Indeed, liver transplants for metastatic cancer "have been largely abandoned," says Columbia's Chabot, because the immune-suppressing, anti-rejection drugs "lead to such a high recurrence rate.

Interestingly, it appears Steve was not given any chemotherapy or radiation treatments after his liver transplant, which undoubtedly contributed to his living over seven years after his surgery.

I've discussed the issue of liver transplant for neuroendocrine tumors like insulinoma (which is what Jobs had) before. While it is arguable whether a liver transplant was the best decision for Jobs in 2009, it was certainly not outside the standard of care, nor was it unreasonable. Mercola also makes a very silly statement when he states that "if only" they had removed the portion of the liver containing the cancer, Jobs wouldn't have needed all those nasty immunosuppressants. Well, duh! Give that man a prize for stating the obvious as though it were some brilliant insight! Here's the issue: Transplant is not even considered for insulinoma metastatic to the liver unless the metastases are unresectable (i.e., they involve two or more lobes or are too close to major vascular structures). And what defines resectability? To boil it down to its essence, although there are certainly other considerations (the aforementioned vascular structures, for example) it's basically the ability to remove the liver tissue containing all of the metastase(s) and still leave enough liver tissue behind to survive on. Contrary to what Mercola thinks, the liver's regenerative capacity, although truly impressive, is not limitless, particularly if the liver is compromised by cirrhosis. Take too much liver, and the patient will die of liver failure because the liver can't regenerate fast enough (or just enough) to achieve function consistent with life. In addition to that basic equation, we just don't know whether Jobs' liver had been damaged or otherwise compromised by the insulinoma; it's possible that his liver wasn't in the best shape at the time, leaving less capacity to regenerate.

Be that as it may, although somewhat controversial, liver transplantation remains an accepted standard of care for the treatment of neuroendocrine cancer metastatic to the liver, as long as the metastases are not rapidly growing and as long as there is no evidence of metastasis elsewhere. Indeed, a very recent analysis of the UNOS database examining transplantation for neuroendocrine tumors concluded:

Although surgical resection still should be considered the treatment of choice in patients with liver metastases from NETs [neuroendocrine tumors], transplantation for unresectable disease is indicated in patients with stable disease without disseminated metastases.

In other words, liver transplants for neuroendocrine tumors metastatic to the liver have not been abandoned and can produce a pretty decent chance of long term survival, compared with other metastatic cancers.

Mercola's nonsense aside, let's move on to Gonzalez's nonsense instead. I must admit that I couldn't watch the whole video; about 15 minutes in, I had to go to the transcript instead. The interview was long and repetitive. And, because I've already written so much about Jobs, I'd like to emphasize that abusing Jobs' memory in order to promote quackery is only part of what Mercola and Gonzalez are about in this interview, although they do that with gusto, in particular in this exchange:

DM: There were some comments that he was leading up to his death, and people would post comments on Facebook and are asking why I couldn't get in touch with him and offer him some therapy. I'm not a cancer expert like you are, of course, but I believe someone like you could have really made a difference. My understanding is that your therapy was offered to him, but could you go to that process of why he chose not to undertake a natural or alternative approach to cancer?

DG: He wanted to see an alternative. In fact when he was first diagnosed, he got some dietary program - again, he was very secretive of that - So I don't exactly know what he did at that point. But through his acupuncturist, there was communication. He was getting acupuncture, and he was doing some alternative things as far as I know. This acupuncturist actually talked to me, discussing the situation. She was really anxious for him to come and see me. But he chose not to do that.

You know, I always respect the patients' right to choose the therapy they want to choose, so I would never dispute that. The patients have to make the decisions based on what they want to do. But she was very adamant; in fact, she knew about all my works in the alternative world. He had seen alternative-type practitioners. She really wanted for him to come and see me. He chose not to do that. From my perspective, it was unfortunate, because he was such a gift to the world in terms of his inventions and genius in the past 30 years.

Ah, yes. How convenient. An anecdote from some unnamed acupuncturist who may or may not have treated Steve Jobs and told Gonzalez about Jobs' situation and that she wanted Jobs to see him. There's no way of verifying the story, no way of knowing if Jobs ever actually saw an acupuncturist, much less that an acupuncturist discussed his case with Gonzalez and tried to persuade Jobs to see Gonzalez. Particularly vomit-inducing is the way Gonzalez turns around the argument based on a "patient's right to choose." Frequently, those of us who support science-based medicine, when confronted with the story of a patient who chooses quackery instead of medicine and suffers harm or dies as a result, will sadly say that a competent adult has the right to choose quackery if that's what he wants, mainly because he does. Self-determination is a basic human right. Here, we have Dr. Gonzalez turning that argument on its head, sadly shrugging his shoulders and expressing regret that Jobs had the right to choose his own course and chose SBM instead of quackery. After his flirtation with some sort of diet and unknown "alternative" therapies, Jobs appears to have turned to scientific medicine and never looked back, at least as far as we can tell based on the limited information available from press accounts. There's one thing that's for sure, though. If SBM couldn't save Jobs, Gonzalez sure as hell couldn't save him either, his claims otherwise notwithstanding. Now that Jobs is dead, Gonzalez's claims have the added bonus for him of being unfalsifiable, even though Gonzalez's methods have already been shown to be worse than useless for pancreatic cancer.

As an aside, interestingly the surgeon quoted above, Dr. John Chabot, was the first author on the paper that demonstrated that the Gonzalez protocol was far, far inferior to even chemotherapy, which doesn't do very much for metastatic pancreatic cancer to begin with. However, as wimpy as chemotherapy is for metastatic pancreatic cancer, Gonzalez's therapy was far worse. Indeed, median survival in patients who got the Gonzalez therapy was about 1/3 of that of those who underwent standard-of-care chemotherapy. To me, that makes the following passage, where Gonzalez claims just the opposite in light of boasting about how he consulted with Michael Landon after his diagnosis of pancreatic cancer and how Landon died within three months, both hilarious and appalling at the same time. After Gonzalez says, "If I had a patient who died in three months, I'd walk in front of a bus," Mercola, sycophant that he is, chimes in:

DM: That may sound like a boast, but you have two decades of experience that shows that when patients with pancreatic cancer come to see you, they don't die in three months.

DG: Not everyone, of course, gets well. But even the ones who have failed, live a lot longer than they should have. One of the limitations of pancreatic cancer is - since the pancreas is a major digestive organ - their digestion is often compromised, and often they've had crazy surgery that interferes with their ability to eat or take supplements. So sometimes there could be management problems, and sometimes they can't do the full program - they need to do half of it. They just look well beyond expected.

Once again, I'll point out that the best study done thus far has shown resoundingly that, not only doesn't Gonzalez cure anybody, but his patients do very poorly. In fact, if you compare the survival curve of patients on the Gonzalez protocol, you'll see that not only do these patients do worse than patients receiving chemotherapy, but they do worse than historical controls as determined by the SEER database. Those are the cold, hard numbers. Gonzalez might have anecdotes. He might have his infamous eleven patient case series in which his patients appeared to do a lot better than historical controls with pancreatic cancer. What he really appears to have had is a massive case of selection bias. Kimball Atwood has covered the whole sordid saga of the original case series by Gonzalez in extensive detail (part 1, part 2, part 3, part 4, part 5). It's well worth reading.

Much of the rest of the interview consists of Nicholas Gonzalez whining long and loud about how he just "don't get no respect." And, boy, does he whine! He goes on and on, complaining that conventional oncologists who take care of celebrities are lauded as heroes, while he's widely viewed as a quack. For example, he is particularly incensed about Linda McCartney getting a bone marrow transplant for metastatic breast cancer back in the 1990s. This was a therapy that was thought to be efficacious at the time but was ultimately shown not to result in any better survival than chemotherapy, while producing a high level of morbidity and mortality. In particular, he was incensed by press coverage that painted McCartney's oncologist as heroic, while he and his fellow "alternative" practitioners are portrayed as quacks. Of course, the difference is that at the time there was evidence that bone marrow transplant could improve survival in advanced breast cancer. More importantly, when the evidence came in that it didn't work, oncologists abandoned the procedure. Contrast this to Dr. Gonzalez. When his protocol was shown to be worse than useless, what did he do? Certainly, he didn't give it up. Rather, he lashed out at the investigators and threatened to sic his buddies in Congress on them. Now he lashes out against all oncologists with viciousness and then invokes the old "science as religion" canard, one of the oldest canards in the book of crank strategies. In order to give you a flavor of his rant, I'm going to quote a rather long passage. There's a lot more there--painfully more--but this should give you an idea:

That's why you have to look at this as a religious phenomenon rather than scientific issue. Conventional academic medicine is the last religion left in America. We've become an irreligious society. The media would never trust a politician, a religious leader, or anyone in the position of the government. But when it comes to academic medicine, if some guy in white coat says, "Boo," everyone would say, "Oh my God he said 'boo,' let's go right an article."

Conventional academic medicine is like religion. Of course, they have their temple - if you look at Sloan-Kettering, it looks like the Mormon tabernacle. It looks like a temple. The priests - the doctors - they wear their own robes, like the ancient Hebrew priests. They have strict regulations about their dress or robe. These guys were robes, too, and they have the priesthood as the status quo. You know, the white code. They're very distinguished-looking, always impeccably dressed and with shiny shoes and all. And they have their own language - the priesthood or whatever religion always has its own specific spiritual religious language that the rest of the mortals don't understand. Of course, doctors have this scientific gibberish that the media don't understand. The most cynical journalist who wouldn't trust anything a politician says, when Sloan-Kettering sends out a press release, reprints it as literally the word from God.

So the way you have to look at medicine is not as a scientific profession, but rather a religious profession. It's the last reigning religion in America. The NIH, NCI, or American Cancer Society has its temples, priesthood. It has its irrational beliefs. It has its own special language. It has its tools, it has its rituals. The doctor known for making rounds is a ritual. You learn very little making rounds as a doctor. It's all ritual for the patient - it's a religious ritual that doesn't have much of a value to the patient. So they have rituals and all these things that are equivalent to kind of a priesthood class of religion, rather than an objective thing. Once you realize it, you'll go, "Oh, that makes perfect sense."

The reason Linda McCartney went for a bone marrow transplant is not because she read the data and realized it would work for her. It's because she believed in it - it was a faith issue. She was going to this priesthood kept in a temple in New York City. They had resources, and she could pay for them. So it was religion to her. Patrick Swayze to the best of the best - Stanford is the West Coast mecca. It's a religious temple. When he went there, it was faith, even though there's not a single piece of evidence they gave him that chemo would cure him and would lead to substantial results. He did it because of faith - irrational faith, because it's the belief that academicians really have these special secrets that none of us have and none of the lay people (we mortals) know. Their special knowledge, wisdom, or rituals would make us better.

The fact that they don't make us better - Landon died, Patrick Swayze died, Linda McCartney died; I could list 20 celebrities that consulted or called me, never did my program, and are dead because they went to the conventional route.

Why didn't they do mine?

I don't have a temple. I don't even own a white coat. I can wear a white coat - a good one - but I don't have one on purpose. I'm not part of the academic priesthood, so I don't wear a white coat. Yes, I have a stethoscope and a medical office like any because I need that, but I'm not part of the academic priesthood.

Michael Landon picked that up right away. In fact, his press agent, Harry Flynn, wanted him to come and see me. Harry and I remained close friends. He was really upset, and one of Landon's comments about me is that I wasn't fancy enough. I wasn't fancy enough, so he went to the priesthood. He went to Cedars-Sinai.

I find this entire rant very telling. The resentment is palpable, as is the inferiority complex. Gonzalez is clearly intensely envious of oncologists and very angry because he isn't taken seriously. Of course, to be taken seriously, it helps to have the goods, as far as science goes. He doesn't. What he has is an idea based on long-discredited notions of how cancer forms and grows that doesn't work and harms cancer patients. He has chosen his path, the path of medicine not based on science, and now he is paying the price. He is not respected because he does not deserve respect. He is not taken seriously because he has not earned it. And he's really mad about it.

He's not so angry, however, that he can't recognize an opportunity when he sees one. Steve Jobs dies of a form of pancreatic cancer, and there's his opening. He can tell some unverifiable story that some acupuncturist who was allegedly treating Steve Jobs after he was first diagnosed had urged him to go and see Gonzalez and that Jobs had declined. He can spread the claim that if only, only Jobs had listened and had come to see him, he could have saved Jobs' life with his woo. Again, how convenient.

On the other hand, it's good for business, and the types who are prone to falling for Gonzalez's woo will likely eat it up.

oracknows Sun, 10/09/2011 - 21:00

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I could list 20 celebrities that consulted or called me

Evidently the concept of "patient confidentiality" is one of those quasi-religious aspects of medicine that Gonzalez is keen to set aside.

Why didn't they do mine?

Perhaps more celebrities would put themselves in Gonzalez' hands if he didn't radiate such a palpable 'starf*cker' vibe of caring about them not as patients, but as -- well -- celebrities for him to use in his future advertising.

Do you mean Dr Nick Riviera? That guys famous!

Steve Jobs was a man of many personal faults, but he was also a visionary and justifiably an icon. He was also a damn smart individual, certainly able to ask the right questions of what (I assume) were a whole host of doctors, and he probably made all the right decisions, based on their advice, as to which treatments to pursue.

Sometimes people die.

Of course Steve Jobs did not contact Gonzalez, he would be the last person on earth to fall for that schtick. He would have taken one look at the data and dismissed it outright after all this was Steve Jobs we are talking about here. I agree with the sentiment that Gonzalez appears very annoyed. I actually think he should be very scared.

"But through his acupuncturist, there was communication. He was getting acupuncture, and he was doing some alternative things as far as I know. This acupuncturist actually talked to me, discussing the situation. "
Assuming the story is true, this woman was breaking patient confidentiality. And Gonzales seems perfectly happy about encouraging her to do so. Does he even know what the word "ethics" mean?

I guess if they aren't "real" doctors, then Doctor-Patient confidentiality doesn't apply, right (snark).

Given the current legal focus on PI (personal information) and the sanctions in place should there be a release (whether on purpose or inadvertent), I believe it will only be a matter of time before one of these quacks gets themselves in some real trouble.

...Linda McCarthy...

Shome mishtake, surely?

I just fielded a comment on my own blog from an antivaxer who urged me to do my research on Youtube. Where of course this sort of mendacious, misleading idiocy is rife.

Good post, says stuff that needs saying. Repeatedly, unfortunately.

I'm still trying to wrap my head around the concept that someone who calls himself a doctor thinks blasting caffeine into your ass cures cancer. Unreal.

It's weirdly ironic to have such an obvious person-who-sounds-like-a-duck claiming that conventional medicine is like a religion.

It reminds me of Richard Feynman's wonderful "cargo cult science" essay, but in reverse ... it's as if some crank were claiming that the LHC and the Hubble Space Telescope are instruments of "cargo cult science".

As so often happens, he has it exactly inverted.

It is interesting that Gonzales seems to believe that he can use the same protocol to treat cancer of the endocrine and exocrine pancreas. They're not the same tissues and the cancers are radically different. The very fact that he doesn't know that marks him as a completely useless quack.

I always find it bizarre that alties, who are heavily into faith-based woo like "spiritual medicine" and deride skeptics as being atheists, think the worst insult they can fire back is to call their opponents "religious".

Really, fellas. If you view "religious" as a term demonstrating utter contempt, your quotient of self-loathing must be very, very high.

I wonder why woo-meisters circle seriously ill ( or recently deceased) celebrities- like the vultures they truly are? Instant advertisement that is complemented by income from folks who have real money- how can they lose? If the person dies after treatment, they can blame SBM, if someone dies without their "care", they can say "If ONLY!"

I am sickeningly familiar with this trope courtesy of veteran woo-slinger Null: he reaches out to the ill (Aretha Franklin) offering up Gonzlez and Gerson or relates sadly how Arthur Ashe was brainwashed into accepting SB treatment for HIV/AIDS. The list includes many of those cited above and many others. ( continued)

In our culture, celebrities have status that inflates far beyond their area of expertise or talents. They are visible and news worthy- all is like red meat to woo-meisters ( even if they're vegans). Ride upon the stars' Armani coattails ( or Vera Wang gown's train ): could you imagine if Michael Douglas chose *not* to eschew woo? What press for alt med.

If pseudoscience is more advertisement than information aren't the famous perfect spokes models, fitting right in? Woos surely love Suzanne Somers not performers with breast cancer who chose SBM and are well- there's a long list -btw-

Celebrities and woo-meisters have something in common: their opinions about science and medicine usually are not based upon a reality-based education.

In all the years reading this and other blogs that smear Gonzalez, I've yet to see any serious specific, and detailed scientific critique of the trophoblast theory of cancer causation first laid out by Dr John Beard over 100 years ago. This theory is the basis for Gonzalez' work all these years. All that you ever say is that we know that's not how cancer originates, without any supporting arguments. Very scientific!

You might start by getting a hold of Gonzalez's book 'Tropblasts and the Origins of Cancer' by New Spring Press. In it Gonzalez makes a strong and compelling case for this theory (while I'm not a scientist, I am quite scientifically literate and asked several friends with the relevant scientific background to read the book and they all said the same thing - that the theory was very plausible and deserves more research.)

Of course I'm biased. I've been a patient of Gonzalez for over 20 years, I've been cured by him of metastatic cancer to the liver, and I know him as a man of dedication, honesty and integrity.

And as far as the so called NIH study that 'discredited' his work, if you read the detailed rebuttal on his website, you'll see that the irregularities if not outright corruption of the study by Dr Chabot of Columbia among others makes the results utterly worthless. Soon Gonzalez will be publishing a book detailing the study's history and irregularities in great detail. It'll be an eye opener.

I know I'll get a bunch of snarky and nasty responses to this note. That seems to be the M.O of those who follow Orac and others of his ilk.

As an example of snark, comment #9 shows complete ignorance of the Gonzalez protocol - Gonzalez never says that enemas cure cancer - they simply help to remove the toxic byproducts of cancer cell breakdown from of the body - that's it. it's primarily the pancreatic enzymes that neutralize the cancer cells. And if coffee enemas were so absurd why were they listed in the Merck Manual for decades before being arbitrarily removed in the 1970's?

And for those who claim pancreatic enzymes can't kill cancer cells, how do they explain the article in Pancreas in 2004 (a very respected journal) whose abstract is as follows:(The enzymes given the pigs were the exact same enzymes that Gonzalez uses, and the dosage was just an informed guess, and without the other parts of the Gonzalez program - and yet the treated pigs lived significantly longer and were healthier. Explain that skeptics.)

Pancreatic Enzyme Extract Improves Survival in Murine Pancreatic Cancer
Saruc M, Standop S, Standop J, Nozawa F, Itami A, Pandey KK, Batra SK, Gonzalez NJ, Guesry P, Pour PM
Objectives:
The disappointing current therapeutic approaches for pancreatic cancer (PC) represent an urgent need for the development of novel methods to control the disease. Based on a recent report on the effectiveness of pancreatic enzyme therapy, we examined the effect of porcine pancreatic enzyme extracts (PPE) on human PC xenografts in nude mice.
Methods:
The malignant human PC cell line AsPC1 was transplanted into the pancreas of male beige XID nude mice that were treated or not with PPE in drinking water. The survival, size, and volume of tumors, plasma pancreatic enzyme levels, fecal fat, and urine were examined as were the expression of transforming growth factor alpha, insulinlike growth factor-I, epidermal growth factor, epidermal growth factor receptor, apoptosis, and proliferation rate of tumor cells.
Results:
PPE-treated mice survived significantly longer than the control group (P < 0.002). Tumors in the PPE-treated group were significantly smaller than in the control group. All mice in the control group showed steatorrhea, hyperglucosuria, hyperbilirubinuria, and ketonuria at early stages of tumor growth, whereas only a few in the treated group showed some of these abnormalities at the final stage. There were no differences in the expression of growth factors, epidermal growth factor receptor, or the apoptotic rate between the tumors of treated and control mice.
Conclusions:
The treatment with PPE significantly prolongs the survival of mice with human PC xenografts and slows the tumor growth. The data indicate that the beneficial effect of PPE on survival is primarily related to the nutritional advantage of the treated mice.
Pancreas, 28(4):401-412, May 2004. PMID: 15097858

Orac, I think you might be going a little hard on Gonzalez. You make it sound like Gonzalez knows exactly what he's doing. I see no reason to suspect he doesn't believe his own hype. Now, there are clear reasons why he shouldn't and clearly his hype isn't based on any sort of scientific evidence. It's also clear that he is actively harming people, both by convincing them not to seek real medical treatment and by prescribing them something that makes their cancer worse. I just don't think he knows that.

That said, if someone started to berate me for getting a resection, radiation and chemotherapy, and tried to make some money off my suffering, I'd be quick to remind them that I can still break their nose.

What universe is Gonzalez living in where many Americans, and the American media, don't listen to religious leaders? In mine, the pope gets press attention for statements on politics and ethics; and newspapers routinely run columns that offer the opinions of ministers and rabbis, presenting those men as experts on relationships and ethics. Presidential inaugurations include speeches by men whose "qualifications" begin and end with leading a Christian church.

But Gonzalez claims, not just that medicine is a religion, but that it's America's only religion, at the same time that "he's not a real Christian" is considered a reasonable comment about a presidential candidate?

"The priests - the doctors - they wear their own robes, like the ancient Hebrew priests. They have strict regulations about their dress or robe."

I would think those breastplates with the precious stones would start getting heavy after a few hours. But I'm only a Levite, what do I know.

Knightly Q. Blowguns
I must make a will immediately. There are things I want included in my funeral service, and they mostly involve saying "Fuck you, you charlatan" to anyone who says I'd still be alive if I'd turned to woo.

Appointment made with lawyer!

"The doctor known for making rounds is a ritual. You learn very little making rounds as a doctor. It's all ritual for the patient - it's a religious ritual that doesn't have much of a value to the patient."

Then maybe you're doing it wrong.

@5 and @9

I suspect it was hearing about the coffee enemas that did it for Steve Jobs. I wonder how often someone has laughed in Gonzales's face when he told them about that part of his treatment.

Militant Agnostic, what about the hair analysis done by a spa owner using a DelaWarr device, which is only powered by "intuition"?

I find this entire rant very telling. The resentment is palpable, as is the inferiority complex. Gonzalez is clearly intensely envious of oncologists and very angry because he isn't taken seriously. Of course, to be taken seriously, it helps to have the goods, as far as science goes. He doesn't. What he has is an idea based on long-discredited notions of how cancer forms and grows that doesn't work and harms cancer patients. He has chosen his path, the path of medicine not based on science, and now he is paying the price. He is not respected because he does not deserve respect. He is not taken seriously because he has not earned it. And he's really mad about it.

This really reminds me of L. Ron Hubbard and his attitude toward psychiatry. When the psychiatric community refused to treat Dianetics as the mental-health breakthrough he thought it was, he went on a lifelong rampage against the profession (he started by writing SF stories in which psychiatrists were part of some galactic invasion force; the ones he couldn't sell became upper-level $cientology "scriptures").

@ Cynical Pediatrician:

Then maybe you're doing it wrong."

Gonzalez discounts the value of clinical rounds because he has no hospital affiliation.

When Gonzalez was brought before the NYS OPMC (Office of Professional Medical Medical Conduct) in 1994, a decision was rendered to suspend his license for 3 year...the suspension was "stayed" with the provision that he would undergo training in oncology and perform 200 hours of "community service" in a program providing palliative care to terminally ill cancer patients.

The OPMC based their decision on a review of 6 patients who were terminally ill with end stage cancers. The OPMC found that "In the treatment of all the patients in this case, the respondent demonstrated that he lacked the basic understanding of the disease from which all the patients were suffering".

In 1998 Gonzalez sought to appeal the OPMC decision with this statement, "The respondent asserts that oncology training is inappropriate because the respondent practices nutritional medicine."

Jeez, rightfully so, we categorize some lawyers as "ambulance chasers"...I propose we categorize Mercola, Gonzalez, et alia as "hearse chasers".

"I propose we categorize Mercola, Gonzalez, et alia as "hearse chasers"."

Interesting, but I prefer "Celebrity Cancer Vultures".

NG's religious metaphors/ similes tossed SBM's way are all the more ridiculous if you recall that woo is faith ( not science or data) based and woo-meisters love to preaching about SBM's lack of spirituality as well as its materialism/ reductionism, coldness etc.

I am so happy to be an evangelism of that lack, et al.

Oops! "evangelIST"; see I got carried away by the (non) spirit!

So, let me see if I have this right...

Nick Gonzalez claims that Steve Jobs went to an (un-named) acupuncturist who wanted him (Steve Jobs) to go see Gonzalez for a round of coffee enemas and so talked to Gonzalez about Steve Jobs' personal medical information (e.g. the fact he was getting acupuncture). Is that about right?

For starters, these days my doctor can't even tell another doctor she's seeing me without getting my written consent, but I guess that just shows that acuptuncturists and cancer quacks don't consider themselves bound by the laws of mere mortals.

Secondly, it seems more than coincidental that Gonzalez pipes up with this story about how Steve Jobs refused the Gonzalez high-caffeine-colonic only after Jobs' death. Now, only the anonymous acupuncturist can contradict Gonzalez' story - if we could find her (a long-shot, since I'd be willing to bet hard cash that she doesn't exist).

I suppose that I could make up a similar story about how Steve Jobs' barrista wanted him to try the McIlhenny Therapy (Tobasco sauce enemas) - which would have, of course, stopped the cancer in its tracks - but Steve wouldn't consider it and now, sadly, he's dead because he couldn't see past the high priests (and priestesses) of "mainstream" enema therapies. Steve Jobs can't contradict me and I doubt that anyone will get around to questioning all the barristas in the Bay Area to check my story.

If someone - anyone - finds these clowns (Mercola and Gonzalez) more credible than the least expert "real" doctor, they deserve all they get and more.

BOHICA

Prometheus

Oooops! That should be "Tabasco sauce". Wouldn't want someone putting the wrong sauce up their bum.

Prometheus

..she knew about all my works in the alternative world.

I got an earworm when I read that bit.
It goes like this...
â«âª
She said...
My friend the witch doctor, he taught me what to say
My friend the witch doctor, he taught me what to do
He said that ....
Ooo eee, ooo ah ah ting tang
Walla walla, bing bang
Ooo eee, ooo ah ah ting tang
Walla walla, bing bang...âªâ«âª

Prometheus, in case you need a recipe ...
http://www.zity.biz/index.php?mx=forum;ox=display;topic=2531

To all: Get a hold of that dateline episode that featured Suzanne Sommers and Dr. Gonzalez and see for yourself what the MD that the NIH sent to investigate Gonzalez said about him (hint: It was very positive). Envious of oncologists??? Someone that went to Brown for journalism, Cornell for his MD???? He certainly could have gone the conventional route, don't you think??? You all can certainly question many of Gonzalez' methods, but unless you had the chance to investigate Gonzalez like the MD sent by the NIH did, you are all just hot air.

jake, where did you think I learned that Gonzalez sends hair samples to a spa owner where she analyzes them using a DelaWarr device powered by "intuition"?

You might want to check out the articles on Gonzalez linked to in his article (the blue text indicates it is a link, hover your mouse over and click).

Chris, I did say: "You all can certainly question many of Gonzalez' methods..." If you are going to mention the hair sample stuff, and rightly so, how about mentioning what the NIH appointed investigating MD said about Gonzalez' work??? Or is that a case of "If it doesn't fit, you must omit"???

I don't know who jake is seeing for his echolalia, but the treatment ain't working.

Also, repeat after me: multiple question marks do not a valid point make.

Anyway guys, keep up with the hot air. I like hot air. It does more for what ails me than any of the quack remedies this nutter Gonzalez touts. Andit's compatible with my other treatments.

Oh, Jake:
http://scienceblogs.com/insolence/2009/09/nicholas_gonzalez_response_to…

Don't even bother.

(a "Jake" made almost the same exact comment on the other two year old article, it could be someone different, but I doubt it)

Somehow, I'd have found Jake more believable if he'd actually *named* the NIH doctor who was so impressed. I've never heard of the NIH doing investigations like that...

Chris, again I ask you to mention to everyone here what the NIH appointed investigating MD said about Dr. Gonzalez' work in the dateline program with Suzanne Sommers and Dr. Gonzalez. You indicated in post 33 that you saw this program.

Why? When did you ask that? Not that it matters, because if you are the same Jake as the previous thread, you are a waste of time. I will not respond to you until you answer the following questions:

1: What evidence do you have that the DelaWarr radionics machine actually can test hair samples with intuition?

2: What evidence do you have that coffee enemas are effective in cancer, and do not cause more stress on the patients livers?

3: Where is the report from the NIH official?

4: Have you learned basic HTML?

5: Have you read the books Charlatan by Pope Brock and The Emperor of All Maladies by Siddhartha Mukherjee?

Again, to see previous Jake performance, please read:
http://scienceblogs.com/insolence/2009/09/nicholas_gonzalez_response_to…

It is an amusing read.

Chris, I ask you again for the 3rd time (in my post 34 and 39): Please mention to everyone here what the NIH appointed investigating MD said about Dr. Gonzalez' work in the dateline program with Suzanne Sommers and Dr. Gonzalez. You indicated in post 33 that you saw this program. But before you answer, I will answer your questions:
1) None and never said that I did.
2) None and there is no known evidence that put more stress on the liver.
3) I have no idea where that report is.
4) Yes.
5) No.
Now it is your turn to answer my one question.

I am not re-watching the thing. If you think the dude is so important, then you tell us his name and find the report.

And you forgot something in #2, the evidence.

Of course there is this from Quackwatch about the two medical malpractice cases instituted by patients of Dr. Gonzalez and the circumstances of the determinations of the court. No wonder Dr. Gonzalez feels "safe" about talking about people who died of pancreatic patients...who might have been "saved" if they used Gonzalez as a "nutrition" doctor:

In 1997, a jury in New York City awarded $2.5 million in actual damages and $150,000 in punitive damages to a former Gonzalez patient. The woman testified that she had been diagnosed with an early stage of uterine cancer in 1991 and underwent a hysterectomy. Instead of following through with medically recommended radiation and chemotherapy, she consulted Gonzalez who discouraged her from following her cancer specialist's advice. Based on his interpretation of a hair test, Gonzalez prescribed up to 150 dietary supplement pills a day plus frequent coffee enemas. Later he claimed that the cancer was cured even though it was progressing. It eventually damaged her spine and left her blind. An appeals court upheld the $2.5 million verdict but dismissed the punitive damage award. In April 2000, a jury awarded $282,000 in damages to the husband of a 40-year-old college professor who had died of Hodgkin's disease in 1995. According to an article in The New York Daily News, the jury found him negligent because he failed to arrange "appropriate testing" to track the cancer, relying instead on an unproven method of hair analysis [38].

In the previous Gonzalez-related thread, Sevika explains the rationale for coffee enemas as follows:

Dr. Lee W. Wattenberg, MD (Univ. of Minnesota/NCI-Designated Masonic Cancer Center) was able to show that substances found in coffee - kahweol and cafestol palmitate - promote the activity of a key enzyme system, glutathione S-transferase. This enzyme is responsible for neutralizing free radicals, harmful chemicals now commonly implicated in the initiation of cancer and needed for detoxification. Consuming coffee orally does not produce the benefits experienced when it is taken as an enema.

Which is all very well, until you look up the actual research by Lam & Wattenberg, and find that all their results were observed by administering (green) coffee grounds to mice orally. Once again we are left wondering about the preoccupation with enemas.

The quality (certainly not the creativeness!) of both your article and several of the respondents is so typical of today's brainwashed society.
You 'Orac' diminish Mercola to quack status, yet like your minions, likely donate to the multi-billion dollar, amazingly ineffective, traditional cancer research industry!
If the cancer industry really gave a crap about stopping the proliferation of cancer they'd teach * at least a little bit * about prevention. 'Stop eating all the bloody sugar - cancers favorite food (offered as a treat in some chemo treatment centers in the form of Tootsie Rolls and cookies)- and trans fats, and stop your exposure to hazardous plastics and food additives.'
Mercola (like Mike Adams) may not be God, but they're a damned site closer to telling the truth than most industry driven traditional practitioners.
Most of your respondents likely also support fluoridation of city water, amalgam (mercury) dental fillings, GMO crops and the 38 vaccinations children are now scheduled for before they reach the age of 6.
When are we - the world - going to wake up?
Dr. Gonzolez is, in my opinion, not the best answer to healing cancer. He, like Gerson and many others leaves out 'aspects' of healing that can't be left out.
Some even promote chemo (I've a real challenge with that, as chemo and radiation reduce the body's ability to protect itself by diminishing the immune system). But what I surmise (I'm sure you'll have a picnic with this :o) with all the 'Alternative' practitioner methods I've looked at, is that they've the common sense to know that the more natural (body identifiable)approach you use, the more likely the body is to heal.

Here is Dr. Gonzalez's "explanation" on vitals.com a website to check for a physician's practice and malpractice history:

Personal Statement:
I OFFER AN AGGRESSIVE NUTRITIONAL THERAPY FOR THE TREATMENT OF CANCER AND OTHER DEGENERATIVE DISEASES. AS MY RECORD ON THIS SITE INDICATES, I HAVE LOST TWO MALPRACTICE CASES. IN ONE CASE, THE PATIENT FELT SHE HAD BEEN HARMED BY CHOOSING TO PURSUE THIS TREATMENT RATHER THAN ENTERING A CLINICAL TRIAL-EVEN THOUGH EVERY PATIENT THAT WAS IN THE CLINICAL TRIAL HAS NOW DIED AND SHE IS STILL ALIVE AND APPARENTLY CANCER-FREE 13 YEARS LATER. IN THE OTHER CASE, THE PATIENT HAD ALREADY RECEIVED EXTENSIVE ORTHODOX THERAPY INCLUDING EXPERIMENTAL CHEMOTHERAPY AND CHOSE TO PURSUE THIS TREATMENT INSTEAD OF GETTING MORE. AFTER DEATH, HER HUSBAND STATED THAT SHE WOULD HAVE BEEN WILLING TO GET A BONE MARROW TRANSPLANT HAD SHE NOT BEEN TREATED BY ME- EVEN THOUGH SHE TOLD ME ON MANY OCCASIONS THAT SHE WOULD NEVER DO THAT. BECAUSE WHAT I DO IS DIFFERENT FROM WHAT MOST ONCOLOGIST WOULD DO, IT IS DIFFICULT FOR ME TO GET A FAIR TRIAL. NONETHELESS, AS MY RESEARCH PROGRESSES, THE OVERALL BIAS AGAINST MY WORK IN THE MEDICAL AND LEGAL SYSTEM IS DECREASING.

Jake:

None and there is no known evidence that put more stress on the liver.

In case I was not clear, you just made a claim that coffee enemas do not put any stress on the liver. You need to back that up with some evidence. Just cite the journal, title and date of the paper that shows coffee enemas do not cause stress on the liver. I mean, you totally failed to show it had any benefit. Now just show it does not cause any harm (oh, and if you look at the previous thread, I provided some case studies of harm).

You had over a year to read either of those books. It is quite shameful that you did not read The Emperor of All Maladies.

Everyone else,this is Jake. Enjoy.

Yes, everyone, that is me!!! I stand by what I say. I don't avoid questions like you, Chris. You are a coward for never answering my question. Furthermore, I said that there is no evidence that coffee enemas put more stress on the liver, if you paid attention. The fact is "everyone" that on that dateline program there was an MD that was chosen to investigate Dr. Gonzalez after he lost a malpractice case. In the end, the MD said that there was a place for Dr. Gonzalez' treatment in the medical world. This MD investigated Dr. Gonzalez and made this conclusion. Has anyone else on here done what he did? Like I said to Chris "If it doesn't fit (with your opinion), you must omit".

More Jake. Enjoy.

@ Chris: Thanks for the "heads up" about Jake, who IMO is some sort of shill for Gonzalez or other quacks. I hope you read the NYS OPMC decision on Dr. Gonzalez and his incompetent cruel treatment of 6 terminally ill patients.

The OPMC findings and decision were a result of intensive investigation of Dr. Gonzalez's records and are a grim documentation of his quackery and his callous disregard for the six patients who underwent his therapies. The OPMC followed through with hospital records where these patients were finally admitted for palliative care. As I stated above this quack has no hospital affiliations and ignored patients complaints. Gonzalez told patients that the progression and growth of tumors that caused them excruciating pain were evidence that his bogus therapies were "working".

I don't have to "imagine" what pain these patients went through as I have seen during my clinical practice patients whose pain was managed quite satisfactorily with effective pain medications. It must take a particularly callous individual to deny a patient palliative care while pushing alternative treatments, depleting their financial resources and abandoning them in their time of need.

@Chris

Thank for the link. It was very amusing to read jake's overwhelming stupidity again. Great for a laugh.

Well, he must be a shill when he ended this comment with: "GONZALEZ IS THE MAN!!!"

Oh, and it was not an NIH guy, it was someone from the New York State Medical Board, Julian Hyman, a retired oncologist --- I wouldn't be surprised if he was paid handsomely for his endorsement. It does not change the utter failure of the Gonzalez protocol as noted in Pancreatic Proteolytic Enzyme Therapy Compared With Gemcitabine-Based Chemotherapy for the Treatment of Pancreatic Cancer (J Clin Oncol. 2010 April 20; 28(12): 2058â2063).

By the way the answer to his one of silly questions, mainly why was Gonzalez still allowed to practice, was to read the book Charlatan by Pope Brock. You will notice he has not done that. Makes sense, he was shown to be a bit lazy by wanting us to spoon feed him info Orac that is readily available.

@ Herr Doktor Bimler

Re: Sevika explaining the rationale for coffee enemas

This enzyme is responsible for neutralizing free radicals, harmful chemicals now commonly implicated in the initiation of cancer and needed for detoxification.

Implicated in cancer initiation/free radical detoxification (in other words, cancer prevention), ergo cures cancer?
Well, that makes perfect sense, it's like closing the door of the chickens' den to stop the fox from entering. It works.
And if the fox has found its way inside the den and is busy slaughtering chickens, the first thing I do is to go close the door.
Oh, wait.

@ John

Poe? You forgot the Illuminati. Oh, and the fake Moon landing. Talk about being anti-conformism and original.

Give me five bucks and ten minutes and I'll provide anecdotal "evidence" that I can cure cancer with a kick to the shin.

Then I'll be getting infomercial-interviewed by "Dr." Mercola.

*reality goes wavy as we cut to the fantasy segment*

FD: The treatment is safe and as effective as the treatments of "Dr.Gonzalez". The only side effect is a deep bruise on the lower leg. If they only would have used this treatment, Steve Jobs and Patrick Swayze not only would still be alive, but feel 20 years younger as well

Mercola: Dr. Disbelief, how exactly would kicking the patient in the shin treat cancerous tumors?

FD: Are you shilling for bigPharma and the medical-industrial complex now, "Dr. Mercola?" Are you claiming these people never had cancer? That they are deluded, or that I obtained their testimony through underhanded means? If he would have came to me, Mr. Jobs would slap you in the face for that comment.

And then the money would just pour in.....

.....
Seriously. How do these people live with themselves?

@ Heliantus:

I suspect that "John" wandered over here to post his brain droppings after he read all his crank emails today and then synthesized his basic...very basic...knowledge about human disease processes that he learned from Google U.

His posting is chock full of thoroughly debunked conspiracies about big pharma, big government, vaccines and the poisoning of water and the diet. He then coupled that with "nutrition" as taught by his mentors Null, Adams and Mercola and the crap about "supplements" that he so readily purchases and consumes.

Sad to say, he is the typical "educated" consumer that snake oil salesmen target, who disparage anyone and everyone who is educated in the sciences, has higher education and who practices and lives their own personal life based on science-based medicine.

I bet he is also a charter member of the Tea Party and supports the Canary Party as well...is a "God-fearing" "true American" who is clueless about immunology, disease treatment and lacks the ability to plan his diet to provide all the nutrients, vitamins and minerals to maintain homeostasis and to maintain a healthy immune system...without taking the nostrums that Joe Mercola and the other "nutritionists" hawk. He is the perfect chump for them.

John, I think you are out of your element here and suggest you peddle your crappy science and your crappy conspiracies theories somewhere else...because we ain't buying them

Brilliant post it is one of the best that I've seen, keep up the good work, thanks.

jake:

Gonzales is a quack and his would-be cancer cure is a pile of BS.

No television programme featuring, as you allege, an NIH doctor investigated Gonzales and made positive comments about him, is going to change the above.

It really is that simple.

If you would like more background information, there is a series examining the trial of Gonzales' purported "treatments" over at the Science-Based Medicine blog.

Mandy @58 is a drive-by spambot.

My take on woo-supporters like the above:
Not a shill, not a patient, or an employee but people want to believe in a good miracle - overturn the laws of the universe now and then- even old David Hume was on to this. It's a good *story*. It's *fun*. Who wants stodgy old rules anyway? Entertainment for the masses. I think this is some of the appeal of woo-meisters like those I survey. People want to know/ be "in" on the bringer of miracles or whatever- be first on your block. Rants by the usual suspects ( and tea partiers / canaries) fit the bill.

This site reminds me of the program "Crossfire", where republican backers "debated" democrat backers and the end result was shouting over one another and nothing was accomplished in the end. As an electronics engineer, I can tell you the following: Many times I, and my colleagues, have seen things that we could never explain, but if the end result was good and repeatable, it was good to go. The human body is much more complicated than electronics, so there must be many things that have not yet been explained in medicine. As Chris (finally!) mentioned, Julian Hyman, a retired oncologist, was summoned by the New York State Medical board, to investigate Dr. Gonzalez, and gave his "endorsement" to Gonzalez. This must be have been based on the successes of his patients. Has anyone ever proven that pig pancreatic enzymes that Gonzalez uses to help reduce or eliminate someone's cancer do actually work? No. Has anyone ever proved the converse? No. So the answer is that we don't know if they are useful or not. The same applies to coffee enemas in their purported use for helping the liver eliminate "toxins", when done correctly. Useful or not, there is no proof of either (and Chris please don't bring up the incident about the people that suffered a burn or an "overdose" from them because then we can go to the story of the woman that spilled the McDonald's coffee on her lap and say that coffee taken in orally or rectally is bad). The same applies to the supplements. As far as the diet goes, we know that a high quality diet is effective in helping the body perform at it's peak. As far as the hair test, I won't even comment (sounds bizarre to me). Getting back to my point about my engineering experience. My work is primarily high frequency in nature (up to 18 GHz). Some call some of this work "black magic". In most cases, it is very explainable, but in some cases, it is not, though with enough investigation, it can all be explained. If Gonzalez' patients do well and there is no clear scientific reasoning for why, then who cares? This is evidence based. This is most probably what Dr. Hyman and Ralph Moss (and no, Ralph Moss is not a strict "woo" guy...he investigates all forms of cancer treatments...conventional and alternative...and slams both if they show that they are ineffective...he is not an MD, he is a cancer treatment "investiagator", so don't just be ignorant and call him another "woo" guy or whatever) saw with his records and his patients. If you want to comment in a respectful, positive, way, that's great. If you want to resort to name calling, sarcasm, etc., what does that say about you? Thoughtful debate impresses me. "Crossfire-like" tactics don't.

Has anyone ever proven that pig pancreatic enzymes that Gonzalez uses to help reduce or eliminate someone's cancer do actually work? No.

True.

Has anyone ever proved the converse? No.

False. It's been subjected to good testing and demonstrated to be worse than useless - see the link to sciencebasedmedince in the main post. His patients die faster than if they were entirely untreated.

And that's not even mentioning the fact that there was no basic science support for it in the first place, so the trial was grossly unethical.

Has anyone ever proven that pig pancreatic enzymes that Gonzalez uses to help reduce or eliminate someone's cancer do actually work? No. Has anyone ever proved the converse? No.

Yes, someone has shown the converse:

http://scienceblogs.com/insolence/2009/09/the_gonzalez_protocol_worse_t…

Gonzalez's treatment for pancreatic cancer is, as I pointed out above, worse than useless.

Jake,

I have just one word that will immeasurably improve your writing:

Paragraphs.

Beyond learning about paragraphs, you might also try learning a bit about making a rational argument. And how to tell when you're digging yourself deeper.

The Gonzalez treatment has been shown to be less effective than current therapy for pancreatic cancer (which isn't very effective, itself). Frankly, I'm amazed that an IRB would approve the study, since the Gonzalez treatment is laughable, not to mention biologically improbable.

But, they did the study, the Gonzlalez treatment had worse survival than "conventional" treatment and that is that. Except, of course, that it sticks in the craw of iconoclastic "rebels-without-a-clue", who feel they must reflexively defend the quack over reason and science, feelings over facts.

You go, boy! Don't let the truth get in the way of your crusade, Mr. Quixote.

Prometheus

Jake:

This must be have been based on the successes of his patients.

Or he was paid off. My theory is just as valid as yours. Or more so since the data show his patients fare worse.

It looks like Jake is too lazy to use paragraphs, craft a rational argument, or even read the book Charlatan. He was definitely too lazy to figure out that Orac is a surgical oncologist specializing in breast cancer.

Even more Jake, which is followed by a post listing several incidences of coffee enemas causing harm.

Beamup & Orac: I appreciate your posts, and I understand that you are making the conclusion that if the trial was fair and accurate and if the patients did not benefit from the Gonzalez regimen, then it must follow that the pig pancreatic enzymes do nothing to slow down or eliminate pancreatic cancer. However, you are assuming that the trial was completely fair, which is fine, but I do not believe that it was. Anyway, Dr. Gonzalez has the following in his favor: The case study of 10 patients sent to the NIH, the purported success of his patients, the investigations done by Dr. Hyman and Mr. Ralph Moss (I don't refer to PhDs as doctors), and the letters of support from the VPs of Nestle and Proctor and Gamble. Gonzalez has the aforementioned trial going against him. I have spoken to one of his patients who lived for 4-5 years after a stage 4 melanoma diagnosis and ultimately died. This person told me that the tumors in his liver did disappear while on Gonzalez' program. Knowing all of the above, I just wish that the NIH would look into all of the information it has and get to the bottom of it. Either endorse Dr. Gonzalez for treating certain cancers under certain conditions, or shut him down. I know that there are lots of scam artists out there in every field, including medicine, but I don't believe that this guy is one of them.

However, you are assuming that the trial was completely fair, which is fine, but I do not believe that it was.

Why was it not fair? Your "belief" counts for nothing. Be specific about its flaws and then show that they invalidate the study's findings.

Anyway, Dr. Gonzalez has the following in his favor: The case study of 10 patients sent to the NIH,

Pure selection bias with no control group. To see just how bad the science and how unethical the trial was, read Kimball Atwood's account of both the original case series of 11 and the subsequent clinical trial:

http://www.sciencebasedmedicine.org/index.php/the-ethics-of-cam-trials-…
http://www.sciencebasedmedicine.org/index.php/the-ethics-of-cam-trials-…
http://www.sciencebasedmedicine.org/index.php/the-ethics-of-cam-trials-…
http://www.sciencebasedmedicine.org/index.php/the-ethics-of-cam-trials-…
http://www.sciencebasedmedicine.org/index.php/the-ethics-of-cam-trials-…

Note that this series was written before the results of Gonzalez's trial were published.

the investigations done by Dr. Hyman and Mr. Ralph Moss (I don't refer to PhDs as doctors),

Citations? And tell us how these studies trump the 2009 study that I and others have cited that showed Gonzalez's therapy to be at best the same as doing nothing and at worst worse than doing nothing.

and the letters of support from the VPs of Nestle and Proctor and Gamble.

Who cares? What makes you think that the VPs of Nestle and Proctor & Gamble know more than physicians and scientists?

More Jake, where he exclaims

GREAT NEWS REGARDING COFFEE ENEMAS AND THEIR SUPPOSED "DANGER, TORTURE, AND USELESSNESS"

Don't we just love ALLCAPS!?

By the way, a link in Dr. Shinya's wiki page goes to "Scientific Misconduct." You really know how to choose them.

So Jake, the book Charlatan is not as long as The Emperor of All Maladies. Why won't you read it?

Honestly, I would think that letters of support from the VPs of large multinational corporations would tend to work against his case; their interests are generally business and marketing, not science and medicine (except insofar as they can market medicine).

Orac: So you hang your hat on this trial in which many people with pancreatic cancer were sent to do Gonzalez' program did not or could not comply with his regimen, in which the same selection bias that you speak about was used against him??? A program whose success depends on the patient doing exactly as prescribed. If the people in the chemo arm got the chemo 33% of the time that they were supposed to get it, how would they fare?
You want to discount the findings of a fellow oncologist (Hyman), a cancer treatment investigator (Moss), the VPs of Nestle and Proctor and Gamble, and of the NIH???
If the guy is a fraud, then why is he not shut down?
You don't see Madoff on the street, do you?
Have you ever spoken to any of Gonzalez' patients like I have? Of course not.
Just discount EVERYTHING that does not fit with your beliefs. If it doesn't fit, then you must omit!!!

Orac: So you hang your hat on this trial in which many people with pancreatic cancer were sent to do Gonzalez' program did not or could not comply with his regimen, in which the same selection bias that you speak about was used against him??? A program whose success depends on the patient doing exactly as prescribed. If the people in the chemo arm got the chemo 33% of the time that they were supposed to get it, how would they fare?

Any evidence for this claim? You haven't exactly shown yourself to be a reliable witness.

If the guy is a fraud, then why is he not shut down?

There's more to being a good person that not getting caught.

Just discount EVERYTHING that does not fit with your beliefs. If it doesn't fit, then you must omit!!!

That's your policy, not ours.

"I just wish that the NIH would look into all of the information it has and get to the bottom of it. Either endorse Dr. Gonzalez for treating certain cancers under certain conditions, or shut him down. I know that there are lots of scam artists out there in every field, including medicine, but I don't believe that this guy is one of them."

I did make reference to the NYS OPMC (Office of Professional Medical Conduct) and its deliberations and decision to suspend Gonzalez license for 3 years. The suspension was "stayed" if Gonzalez underwent training in oncology and performed 200 hours of "community service" (through an agency that provides palliative care to terminal cancer patients). Noticeable absent from my postings about this decision is my agreement that this decision was in the best interest of society. IMO, the decision of the OPMC was too lenient in light of the grievous needless pain inflicted on the six terminally ill patients whose charts and records were reviewed.

The man is a charlatan snake oil salesman, totally unqualified (in his own words) to practice oncology and whose self-professed specialty is "nutritional medicine." Gonzalez has no hospital affiliations, relies on hair analysis for cancer staging/progression and abandoned his patients when they reached the point of excruciating pain which required hospitalization for palliative care.

Jake, in spite of prior postings stating that he was treated successfully by a surgeon and an oncologist for Stage III melanoma, has a paucity of knowledge about human physiology and absolutely no knowledge about pancreatic cancer. He is still stuck on the junk science theories of Dr. Gonzalez, possibly because of his deplorable lack of knowledge or because he is a shill.

It is bad to say that jake's utter stupidity, idiocy and utter ignorance of basic science, rational thought, and common decency has me laughing at him?

Jake:

If the guy is a fraud, then why is he not shut down?

Why don't you read Chalatan and find out. It is pure politics, and regulators with their hand tied. You can at least look up the wiki page of the person the book is about. Or are you even too lazy to check out Amazon and wikipedia?

More Jake ALLCAPS. Enjoy.

One notices that Jake has not produced citations from the peer-reviewed literature from Hyman or Moss supporting the efficacy of the Gonzalez protocol. As usual, he's full of bluster but can't produce any evidence.

@Orac

Personally, I think jake is full of something else, but that's just my opinion.

@ Gray Falcon:

Just discount EVERYTHING that does not fit with your beliefs. If it doesn't fit, then you must omit!!!

That's your policy, not ours.

That's not Jake's "policy"...it is a rip-off of Johnny Cochrane's (in)famous quote. Cochrane was the defense attorney for O.J. Simpson who was accused of murdering his ex-wife and another person. During his summation Cochrane referred to the dried blood-encrusted leather gloves found at the scene that Simpson tried on during the trial and based much of his defense of Simpson with this statement:

"If the gloves don't fit you must acquit".

I simply don't know what Jake's "policy" is...aside from the annoying fact-less trolling and the spouting of pseudoscience regarding the "nutrition doctor's" treatment protocol.

On the cancer fighting foods front, I saw part of this video this morning during breakfast at McDonald's.

Hans Rueffert had gastric cancer which was treated with 11 rounds of surgery total eventually including the complete removal of his stomach, as well as chemotherapy and radiation therapy and antiobiotics to treat two rounds of infections in the brain.

He is obviously not opposed to standard medical treatment. But, he touts the "cancer fighting foods" in the special diet he has developed to nourish himself under these extreme conditions.

The video is a bit short on details.

http://www.cnn.com/video/?/video/health/2011/10/10/human-factor-hans-ru…

So there was an NIH sponsored trial that proved, without a doubt, that the Gonzalez treatment for pancreatic cancer was, at best, as effective as getting zero treatment, and, at worst, worse than getting zero treatment. Correct, Orac??? (by the why, the ethics of your field does not compare favorably with the ethics of mine....surgeries and treatments done solely for money, knowing that they will not help the patient...disgusting). Despite this trial, Gonzalez is allowed to continue his practice??? This is not enough evidence to shut him down? Don't any of you wonder why? Oh, it's the politics and the regulators hands being tied, correct, Chris??? Good luck to everyone!!! I'm done here.

Jake,

VPs of Nestle and Proctor and Gamble

I've met VPs at Procter and Gamble; none I've met had any special knowledge of pancreatic cancer. That doesn't mean that the one you mention didn't; without a name it's impossible to determine (s)he does.

"(by the why, the ethics of your field does not compare favorably with the ethics of mine....surgeries and treatments done solely for money, knowing that they will not help the patient...disgusting)."

Jake "reports" his field as electrical engineering and I'm wondering how "ethics" are applied to electrical engineering?

I suspect that Jake is "full of it"...his field is actually "shilling" for Gonzalez. And, Jake is also "full of it" when he posted prior to this about his history of and successful treatment of, Stage III melanoma where he expressed gratitude to the competent surgeon and competent oncologist who treated him...with nary a hint of "surgeries and treatments done solely for money".

I guess "shillers" have their own "code of ethics" and "shilling" pays more than electrical engineering, eh Jake?

@jake

Ah, more ad homs, stupidity, and utter ignorance on your part, you will surely not be missed.

Don't let the proverbial door hit your butt on the way out.

So there was an NIH sponsored trial that proved, without a doubt, that the Gonzalez treatment for pancreatic cancer was, at best, as effective as getting zero treatment, and, at worst, worse than getting zero treatment.

Thanks for proving your ignorance of science, Jake. "Without a doubt" is not a standard any science can ever reach.

With sufficient confidence to demonstrate that the Gonzalez protocol should never be used? Certainly.

Jake:

This is not enough evidence to shut him down? Don't any of you wonder why? Oh, it's the politics and the regulators hands being tied, correct, Chris???

So what proof do you have that Dr. Hyman was not paid off?

And, yes, there is politics. It took years before regulators would look at the Geiers, and Rashid Buttar has gotten away way with dubious treatments and billing. I gave you an easy and entertaining way to figure that out with the Goat Gland Doctor, but you were too lazy to read that. I doubt you have the stamina and will to follow up on the shenanigans of the Geiers, Wakefield, Buttar, and other dubious doctors that have been discussed on this blog.

Even more Jake bluster. Enjoy.

Jake above:

My work is primarily high frequency in nature (up to 18 GHz). Some call some of this work "black magic". In most cases, it is very explainable, but in some cases, it is not

Engineering - You're doing it wrong.

If you don't know why something does what it does, you find out. No engineer I know (or the many techs I work with) would just say "oh, that's magic" and leave it at that.

I think it's telling that no one challenged my comment #15 above, particularly the abstract of the Pancreas study, where the only intervention was to give pigs Dr Gonzalez' enzymes and to the best of my knowledge it was the first time that any intervention significantly extended the lives of pigs with pancreatic cancer. So I can only conclude that this study is highly inconvenient for those who disparage and are 1000% sure that there is no biological basis for the model behind Gonzalez's work.

Further the so called marketing motivation given by commenter #70 to explain away the endorsement of the heads of research at P and G and Nestle is a joke. The Nestle head was the former medical director of the Pasteur Institute and the head of P and G research made the following comments:(taken from Dr Gonzalez web site)

Testimonial of J. P. Jones, Ph.D.
I was Vice President, Research and Development, for one of the largest healthcare companies in the world. We subsidized some of Dr. Gonzalez's research because, as we formally acknowledged, his work had "extraordinary importance and potential for commercial exploitation," and his clinical pancreatic cancer trials "had extremely positive results".
We learned of Dr. Gonzalez by serendipity. An engineer at the company was diagnosed with advanced pancreatic cancer. Another employee said he had heard about Dr. Gonzalez on television. We located Dr. Gonzalez, and the engineer thrived on his program, living three years. The engineer told me that his surgeon was astonished by his survival. He died when, for reasons unrelated to Dr. Gonzalez, he left the program.
We investigated Dr. Gonzalez for a period of six to nine months before we subsidized him. We quickly decided to recruit him, investing substantial sums in the recruitment process because we were convinced he had a valuable program.
During the recruitment period, I invited Dr. Gonzalez to present a seminar for our community. I then reviewed the project at the highest management levels of the company. Their reaction was, literally, that it was one of the most exciting projects ever seen in the history of the company. Everyone supported the idea of moving forward, including the president, the CEO, the businesspeople in healthcare, and research and development.
We are a mainstream company. We believed that Dr. Gonzalez was the next Barry Marshall, and that the scientific implications of his work were phenomenal.
I did considerable due diligence before we subsidized Dr. Gonzalez's work. I interviewed some of Dr. Gonzalez's patients, saw their files, spent many hours with Dr. Gonzalez, and studied his many lectures. I also consulted with my wife, a researcher in oncology and hematology. She became so impressed that, despite no illness, she went on Dr. Gonzalez's program, as did I, and many others at the company. We did so despite lack of insurance reimbursement for the annual expense for dietary supplements. It was the one and only thing I had ever done that made an obvious difference in my health. The difference was "day and night". Both my wife and I continue on the program to this day, more than a decade later, with extremely positive results. Our experience was shared by more than a dozen others at the company.
Dr. John Paul Jones

Dr Jones comments are Inconvenient facts aren't they - and all you have to go on in rebuttal is a fatally flawed NIH study that Dr Gonzalez warned me and others about years before its publication that the methodology and patient selection made the study results absolutely worthless whether they would show his protocol to be effective or not.

The bottom line is that to even begin to acknowledge that enzymes and diet could defeat cancer would cause the entire multibillion dollar cancer establishment to collapse, along with the reputations of thousands of MD's and researchers. And the history of science has shown for centuries that orthodoxy must be defended at all costs, particularly when the livelihoods and prestige of the high priests of medicine would be mortally wounded.

Knowing many of the patients who lived years beyond any reasonable prognosis of their survival on the Gonzalez program and even more cancer patients who were talked out of seeing Gonzalez and ultimately dying in short order breaks my heart.

I'm still looking for the one person on this site who is open minded enough to read the theory behind the protocol, assess the weaknesses of the NIH study and advocate that further investigation is required to determine the degree of efficacy of his work.

I think it's telling that no one challenged my comment #15 above

You are evidently under the impression that being Someone who is Wrong On The Internet (SIWOTI) necessarily creates an obligation for everyone else to correct your errors.

@87: Shut it down, yeah right. Come to the oncology floor of the hospital I work at and say that. You have never seen someone suffer the way those of us in the hospitals have. As if we would ignore a cure. Besides, those of us in Canada don't make the money the way you all do in the US so what motivation would we have and why wouldn't the Canadian government pay for a cheap treatment??????

Herbert,

I think it's telling that no one challenged my comment #15 above, particularly the abstract of the Pancreas study, where the only intervention was to give pigs Dr Gonzalez' enzymes and to the best of my knowledge it was the first time that any intervention significantly extended the lives of pigs with pancreatic cancer. So I can only conclude that this study is highly inconvenient for those who disparage and are 1000% sure that there is no biological basis for the model behind Gonzalez's work.

I think you will find this was a small study on mice (14 treated, 13 controls), not pigs. As the study itself admits:

Because of the experimental design, an adequate survival comparison could not be made. Nevertheless, based on a few mice that were allowed to die spontaneously, treated mice survived considerably longer (58 days) than the control mice (44 days).

The mice in the survival study group given the enzymes had larger tumors than the control group, which they suggested was because they lived longer.

Forgive me for being a little underwhelmed.

"Doris" is spam.

Slight error in my last comment - I skipped a page and quoted from the tumor size study group, in which they couldn't make an adequate survival comparison. There were two identical studies, one in which the mice were left to see how long they survived, and another in which they were sacrificed and their organs examined after different lengths of time. In the survival group they could and did assess relative survival:

The median survival rates in the treatment and
control groups were 43.5 and 35 days, respectively (P =0.009).

I'm still underwhelmed - it was a very small study on mice not humans (or pigs). The survival curve looks strange too, with a lot of deaths early on in the control group. It also seems odd that the control mice in the tumor size group survived longer (44 days) than the treatment mice in the survival group (35 days). It looks like there was a lot of variation in the survival of these mice, and the results could easily have been due to chance.

Mr. Simmens (#87):

"I think it's telling that no one challenged my comment #15 above..."

Yes, it is telling, but what does it tell? Mr. Simmens seems to think that nobody challenged this because nobody (nobody?) could come up with an adequate rebuttal. However, there is an alternate explanation:

Everybody realised that the human trial results trump animal experiments.

This is especially true when the animal results are inconclusive or ambivalent. While animal experiments are an essential part of most cancer therapy trials, it remains true that mice are not humans. Again, this doesn't mean that animal trials are useless, just that they are occasionally misleading. When human results - from properly designed and run clinical studies - are available, they should take precedence over animal studies.

All of the chin-wagging from Gonzalez and his apologists re-emphasise the two Central Tenets of "Alternative" Medicine:

[1] If you get better, it's because of the "alternative" treatments, no matter what else was done.

[2] If you don't get better, it's because you didn't use the "alternative" medical therapy according to directions or you started too late.

In other fields, this is referred to as the "heads I win, tails you lose" principle.

No matter how badly you want something to be true, wishing won't make it so, if it's not.

Prometheus

Herbert,

Dr Jones comments are Inconvenient facts aren't they -

They are comments, not facts, and we don't even know for sure that Dr. Jones made them. I can't find any reference to Dr. Jones' comments anywhere but on Natural News or on Gonzalez's website. Can you direct us to an independent statement from him? Even if he did make those comments, no number of opinions trump cold, hard science.

and all you have to go on in rebuttal is a fatally flawed NIH study that Dr Gonzalez warned me and others about years before its publication that the methodology and patient selection made the study results absolutely worthless whether they would show his protocol to be effective or not.

I'm sure Gonzalez did warn you and others about this, as he was well aware that the results were so devastating. As I recall it took several years after completion before the results were published.

Could you explain precisely what these "fatal flaws" were? I have read more than I care to remember about this study, and the criticisms of it still make no sense to me. Gonzalez was happy about the study design before and during the trial, and only seems to have developed doubts when it had to be terminated due to the enzyme treatment's terrible performance. Gonzalez predicted similar results to his 11 patient case series shortly after the study began (when he was well aware of the "methodology and patient selection") saying:

So, for example, if the average survival with chemo, which we suspect will be 5 months, you would want my therapy to be at least â the median survival to be at least 15, 16, 17 months, as it was in the pilot study. Weâre looking for a median survival three times out from the chemo group to be significant.

In fact the results were almost exactly the opposite of this - the Gonzalez patients lived for 4.3 months, and the chemotherapy patients lived for 14.0 months.

Are we are supposed to believe that by chance the patients who chose pancreatic enzyme therapy were much sicker than those who chose conventional chemotherapy, despite them being in similar health and quality of life as measured by biochemical parameters and questionnaires? Were they then all either unable to keep to the protocol, or were all uncompliant enough for it to have no effect on them at all? Even if most of them were unable to stick to the protocol and were essentially untreated, you would expect the ones who were able to follow it to increase the average survival time somewhat over no treatment at all. I can't see any way that anyone can spin this study that is consistent with Gonzalez's enzyme treatment having any beneficial effects at all.

@Krebiozen:

Are we are supposed to believe that by chance the patients who chose pancreatic enzyme therapy were much sicker than those who chose conventional chemotherapy,

Given that those who chose the Gonzales therapy had to have enough of an appetite to eat 150 pills a day, while those who chose the chemotherapy arm didn't, it seems pretty unlikely that those who chose the Gonzales therapy were sicker than those who chose chemotherapy.

Gonzalez was happy about the study design before and during the trial

Just like every unsuccessful challenger for the JREF million dollar prize.

Pancreatic Enzyme Extract Improves Survival in Murine Pancreatic Cancer

I am relieved that the lab mice were spared the coffee-enema component of the therapy.

Maybe they are not using the right type of coffee for their enema "treatments":

Kopi luwak (Malay pronunciation: [Ëkopi Ëlu.aÊ]), or civet coffee, is one of the world's most expensive and low-production varieties of coffee. It is made from the beans of coffee berries which have been eaten by the Asian Palm Civet (Paradoxurus hermaphroditus) and other related civets, then passed through its digestive tract.[1] A civet eats the berries for their fleshy pulp. In its stomach, proteolytic enzymes seep into the beans, making shorter peptides and more free amino acids. Passing through a civet's intestines the beans are then defecated, keeping their shape. After gathering, thorough washing, sun drying, light roasting and brewing, these beans yield an aromatic coffee with much less bitterness, widely noted as the most expensive coffee in the world with prices reaching $160 per pound.[2] (Wikipedia)

This article from Wikipedia must be an old reference, as the latest price for this "civit coffee" is over $ 500 a pound.

Dr. Mercola ought to look into this and offer civit coffee for enemas on his natural food market website.

@89: "Besides, those of us in Canada don't make the money the way you all do in the US so what motivation would we have and why wouldn't the Canadian government pay for a cheap treatment??????"

Agashem makes a point that I think should be really emphasized in dealing with alternative "medicine". There are a lot of countries in this world besides the United States. Most of them don't like us very much and would greatly enjoy proving us wrong. Many of them are also very poor (not Canada, of course).

A cheap, natural cure for cancer (or anything else, really) would be very beneficial for other countries, in terms of keeping their citizens alive and healthy, keeping their limited foreign exchange funds from flowing to pharmaceutical companies in the U.S., bringing in more funds from desperate patients worldwide, and of course pulling the eagle's tail.

Is it really plausible that in all the countries in the world, there is not one single government that has not been suborned by Big Pharma? Â That there is not one government willing to fund a proper study of the Gonzales protocol in order to show up the incompetents in the U.S.? Â By the standards of a government, running such a trial would not be expensive. Â There's no requirement that Gonzales himself be involved, though I wonder why he hasn't requested some other country -- perhaps one that exports coffee -- to fund what he considers a proper trial.

Of course this applies to any cheap, natural cure claimed to be suppressed by the FDA and Big Pharma.

@99
Or Cuba - This is a country that has universal health care, needs hard currency, and has ventured into providing surgery for hard currency to Canadians who are on long waiting lists and definitely enjoy "pulling the eagle's tail".

Anyone else notice how having Cancer and fighting cancer is so main stream now they even make comedy's about having it-FTW?
After what 70-100 years and still no cure-Good thing since more people work in cancer "treatment" than actually have it. Face it-modern medicine as it applies to cancer is at best a joke, but keeps so many employed, yeah for disease! There are several proven solutions that address cancer simply through nutrition. Gersen therapy is just one with real statistics and successes far beyond your "modern" medicine. It can be easier just to leave the responsibility to your trained medical professionals and die, and most do this. But going to medical school makes you know everything-wow that's neat. Glad you can help keep your facility and big pharma in business!

Mr. Nesterhaus, please stay away from open flames with such delicate strawman arguments.

1- Cancer is not one disease, it is several and they are all different: http://www.phdcomics.com/comics.php?f=1162

2- Once upon a time leukemia was a death sentence for children, no it is mostly survivable.

3- The "Pharma Shill Gambit" is old, tired, boring and very lame. Try something more interesting, like actual evidence

4- If you are willing to open your welded shut mind to new information then go to your local library and check out The Emperor of All Maladies.

Though, since you are too lazy to read Orac's article, the comments and even to hit the "enter" key to create paragraphs, I sincerely doubt you have the intellectual and physical stamina to read a skinny book, much less the thick, but very well written book, I mentioned.

@ Ted Nesterhaus: Obviously you haven't read this article...or if you have...you simply don't have the intellectual capacity to understand it.

In a prior post I made reference to the New York State OPMC (Office of Professional Medical Conduct) and the action it took against Dr. Gonzalez to suspend his medical license for 3 years. This action followed an extensive investigation of the doctor's records and his treatment protocol for 6 patients.

He was found to have egregiously deviated from minimum accepted medical practice and neglected his patients. He had no hospital affiliations, used a bogus hair analysis to stage and monitor the progression of his patients' cancers and refused to provide them with palliative pain relief for their severe pain.

Furthermore, he ignored his patients telephone calls...once it became obvious that his "cash cows" were dying.

During the many hearings, he asked to be evaluated not by the standards of his medical profession; instead he requested that he be evaluated as a practitioner of "alternative medicine". He also stated in his own sworn testimony that he was NOT an oncologist but rather a "nutrition doctor". Even you with a limited education could become a "nutritionist" through a mail order diploma mill.

"There are several proven solutions that address cancer simply through nutrition. Gersen therapy is just one with real statistics and successes far beyond your "modern" medicine."

Prove it.

When you make a statement like that on this site, you better be able to prove that with citations from peer-reviewed journals.

@ted

[citation needed]

@ted

There are several proven solutions that address cancer simply through nutrition. Gersen therapy is just one with real statistics and successes far beyond your "modern" medicine.

have never heard of "Gersen therapy". I thought at first you meant Gerson therapy, but that can't be right, because Gerson therapy doesn't work.

lilady

During the many hearings, he (Dr. Gonzalez) asked to be evaluated not by the standards of his medical profession; instead he requested that he be evaluated as a practitioner of "alternative medicine".

The standards of a practitioner of "alternative medicine" is a bar so low that the Limbo champion of Trinidad and Tobago couldn't go under it.

"more people work in cancer "treatment" than actually have it."

Unless you're counting laymen helping their loved ones to cope, that seems exceedingly unlikely. Even if it were true, what's wrong with that?

@ Militant Agnostic:

I think "alternative medicine" is whatever or however you want to ply your "trade".

The OPMC evaluated him on his fitness to practice medicine, not "alternative medicine"...and he was found incompetent.

The interesting thing is that if my Registered Nurse license is suspended or revoked in the state where I practice, unlike medical doctors, I cannot relocate to another state and practice out-of-state.

Ted,
As several people have noted, you've made nothing but unsubstantiated statements that are contrary to experience.
Do you actually have data to support anything you've said?

"Anyone else notice how having Cancer and fighting cancer is so main stream now they even make comedy's about having it-FTW?"

Have you ever heard the comment, "You're about as funny as a heart attack"? People tend not to find deadly medical conditions comical. If there are now comedies about having cancer (and I'll take your word for that), then cancer must be regarded as less deadly than it used to be.

Funny, that.

I do recall something about a comedy movie that involved trying to get a date for a cancer patient. The looked in good enough health from a casual inspection, so it'd be my guess he's getting treated in the early stages. The topic of conversation with his friend was figuring out how to break the news to a prospective date. In one instance, he just blurts it out nearly first thing, and they agree that tactic didn't work.

Of course humor often has to deal with "dark" topics just to get anyone to talk or think about it. There's a reason a lot of "polite" and "politically correct" people despise humor and laughter.

I think Ted may be referring to the cable series "The Big C", which airs on Showtime and is about a woman confronting her diagnosis of cancer. The show is described as a comedy; however, this is the same channel which runs "Nurse Jackie," so any conclusions drawn about "it must therefore be mainstream" are dubious. (Seriously, I'm scratching my head at what point he's trying to make by talking about "mainstream" here. Is he trying to be, like, a cancer hipster? "It used to be cool to have cancer, but that was before cancer sold out to the masses.")

"Anyone else notice how having Cancer and fighting cancer is so main stream now they even make comedy's about having it-FTW?"

I think he's referring to this:
50/50

Just a tip, RUN AWAY from any person in the health field that sells their own supplements.

It is bad to say that jake's utter stupidity, idiocy and utter ignorance of basic science, rational thought, and common decency has me laughing at him?

To all those slamming Dr. Gonzalez. Here are some FACTS. In 1988 my wife was diagnosed with breast cancer. She had a masectomy and was placed on Tomoxifin which has simple side effects such as uterine malignancies. She almost died at Beverly Hills Medical Center when they almost overdosed her with pain meds. Her Oncolgist, Barry Rosenburg at Cedars Sinai was a wonderful doctor however after a year the cancer had metasticised into her other breast and four lymph nodes deep. Through a referral we flew from LA to NY to meet with Dr. Gonzalez and my wife chose to undergo his therapy. Make no mistake it is an arduous and disciplined therapy and this is the reason I would suspect many do not endure the protocol. She did. It required 168 suppliments a day, 5 days on, days off. Detox protocols, liver flushes, purges and yes 2 coffee enemas each day. The detox is crucial. Many don't die of their cancer they die from the toxicity of their conventional treatments. Do I shun Orthodox medicine, NO. But the fact is orthodox medicine does not practice detoxification in its treatments and the body many times is just overcome by the breakdown of the tumor waste and coupled with the toxicity of the chemo or related drugs. Bottom line: She is still alive almost 25 years later. So before you lambaste pioneers like Dr. Gonzalez you must accept the fact that there an many grateful people out there for his work and courage.

Great post by Scott in support of Gonzalez. Another very interesting piece for those naysayers that think that they know it all and part of that is in thinking that diet will have no effect on treating cancer:
http://www.ketotic.org/2011/08/advanced-cancer-and-ketogenic-diet.html
If you don't believe this, then you can go to the pubmed publishing that was recently done for those from the Wurzburg hospital in Germany, who ran this trial.
Notice the connection....ketogenic diet - Gonzalez protocol. If you geniuses can scientifically, and honestly discredit the ketogenic diet, then go to town. If you can't, then you had better start spreading the word to any of your loved ones that have this dreaded disease.

Jake, if you make a claim that there are PubMed articles, then you should post the title, journal and date of those studies.

Jake, do you really think there is absolutely no middle ground between "diet will have no effect on treating cancer" and "the right diet can cure existing cancer"? Attributing the first belief to anyone who opposes Gonzalez's unproven claims, and pretending that those claims are suddenly rendered true, or even more plausible, by knocking down that straw man, is just sloppy.

When someone claims something incredible, like being able to cure cancer, the burden of proof is on them, to prove their incredible claims. One study, which only 5 of the original 16 participants were able to see through to the end, is not the sort of proof you need to justify your smug declarations.

Here it is, Chris.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

From the abstract:

One patient did not tolerate the diet and dropped out within 3 days. Among those who tolerated the diet, two patients died early, one stopped after 2 weeks due to personal reasons, one felt unable to stick to the diet after 4 weeks, one stopped after 6 and two stopped after 7 and 8 weeks due to progress of the disease, one had to discontinue after 6 weeks to resume chemotherapy and five completed the 3 month intervention period. These five and the one who resumed chemotherapy after 6 weeks report an improved emotional functioning and less insomnia, while several other parameters of quality of life remained stable or worsened, reflecting their very advanced disease. Except for temporary constipation and fatigue, we found no severe adverse side effects, especially no changes in cholesterol or blood lipids.

Ahahahaha...I don't think we even need to bother 'scientifically, and honestly discrediting' the ketogenic diet...their own study does just that.

Antaeus and AdamG:
What this small study showed is that 5 of the 10 people that were actually willing to stick to the diet had stable disease or better. Sure, it's a small study and I would think that they would move on to the next phase. For those 5 people that were having "success", I'm sure that they are very grateful. And I'm sure that there are many people doing the Gonzalez thing that are very happy that they did as well, like Scott Warner's wife (post 116). The other point that I wanted to make is that Dr. Gonzalez' "treatment" also relies on a carbohydrate and sugar restricted diet. Getting back to this ketogenic diet, is there any science that says that this diet is worthless? If there is, then let me know. If not, then maybe you may want to mention it to someone you know that has cancer?

What this small study showed is that 5 of the 10 people that were actually willing to stick to the diet had stable disease or better

No, that's not what the study showed. First of all, 'stable or better' is an extremely misleading phrase. What the authors actually show, according to their own abstract, is that the subjects "report an improved emotional functioning and less insomnia." These are entirely subjective 'measures,' and neither is a good indicator of disease progress. It is ENTIRELY MISLEADING to claim that this means their disease was 'stable or better,' especially when the very next sentence states that "several other parameters of quality of life remained stable or worsened." Why do only 'emotional functioning' and 'insomnia' matter? Probably because they are the only variables that showed any improvement. That's a dishonest tactic we like to call 'cherry picking' in the scientific community. Additionally, the authors show no evidence that similar results could not be produced entirely by placebo.

Getting back to this ketogenic diet, is there any science that says that this diet is worthless?

You fail to understand how the scientific method works. You hypothesize that this diet works. Then you claim that it's up to us to 'disprove' you. Unfortunately, in order for us or any other rational individual to believe you, you need to back up this hypothesis with experimental data. The study you cited does not qualify. Asserting that something is true until it is disproven does not make it true. Just ask the invisible dragon that lives in my garage.

Probably because they are the only variables that showed any improvement. That's a dishonest tactic we like to call 'cherry picking' in the scientific community.

Although one does have to give the authors credit - they DID correct for multiple comparisons. Which is all too rare in similar contexts.

This doesn't mean that the paper says what jake claims, of course, but it's worth mentioning when people do things right.

Beamup, you're entirely correct...the cherry-picking I was referring to is all from jake, not the authors. They never claim anywhere in their paper that the diet caused the disease to remain 'stable or better' as jake claims. I'm actually somewhat impressed with the restraint the authors of the study show, they don't really oversell their results too much. Perhaps the credit for that belongs with the reviewers, though.

I notice that the study does not state, nor do the results support, that a ketogenic diet actually helped treat the cancer.

@ AdamG:

I did not mean to imply otherwise. I merely meant to say that cherry-picking of results by anyone generally implies that there are many different results (else there would be nothing to cherry-pick among). And when there are many different results in a paper, authors all too often fail to correct for multiple comparisons. These authors did not so fail, and should be credited for doing the stats right.

Perhaps my choice of quoted lines was overly limited. I didn't mean to impugn the authors in any way.

@Beamup
Haha no problem, I think we're in violent agreement here.

The question is, will jake return with more baseless claims regarding this diet? I don't think we'll ever be able to convince him that his position is irrational, given both his past statements and his personal experience with Gonzalez.

Adam and Beamup, is that study one that qualifies for Orac's plea here:
http://scienceblogs.com/insolence/2012/03/in_which_orac_takes_advantage…

@Adam G: Contrary to what you say, the study does say that 5 patients had stable disease. The Time magazine article said that some tumors shrunk, but that is not mentioned in the pubmed article...maybe Time got the shrunk tumor wrong.

The facts are as follows, folks:

5 of the 5 patients that completed the 12 weeks on the diet had stable disease.
3 of the 6 patients that reached ketosis had stable disease.
5 of the 9 patients that were given a diet rating of good or very good had stable disease.

Now, seeing the results of this limited study, would you or would you not tell a loved one with cancer to try this diet???

Also, from this publishing: "When we started the study in 2007, except for two preliminary reports [26,54], no protocol was available on how to perform an LCHF or ketogenic diet study with cancer patients. Since then, a study protocol was published by Fine et al. [55], and four clinical trials were registered in the clinical trials database [56]. However, no patient's data resulting from these studies have been published so far. Thus, it will be very interesting to see if the slightly different nutritional settings of LCHF or ketogenic diets will benefit the study patients as well."

Exactly, or maybe a restricted carb. diet plus pig pancreatic enzymes plus many other supplements. (i.e. - Gonzalez regimen), or maybe some combination of a restricted carb. diet plus some way of shrinking the tumor?

Steve Jobs, neuroendocrine tumors, and alternative medicine

oracknows — Fri, 07 Oct 2011 01:00:00 +0000

Steve Jobs, neuroendocrine tumors, and alternative medicine

It's been a mere two days since Steve Jobs died. Although it hasn't yet been revealed what his specific cause of death was, it's a good bet that Jobs' death was due to a recurrence of his pancreatic cancer, first diagnosed in 2003, for which he underwent surgery in 2004 and ultimately a liver transplant in 2009. It's a history that I outlined yesterday (at least up to the time the original posts were written) by reposting two posts I wrote about his liver transplant back in 2009. But a funny thing has happened since then, and that's that Jobs has become a flashpoint in an argument that has nothing do with the technology his company created or his role in the history of American business and technology. Rather, it's about alternative medicine and what role it did (or did not) play in Jobs' ultimate demise.

Predictably, first out of the box is the despicable crank known as Mike Adams. As I've written about in the case of Patrick Swayze, Tony Snow, Farrah Fawcett, and others, Adams has made a not-so-savory name for himself for ghoulishly (and gleefully) taking advantage of the death of celebrities in order to blame "conventional" medicine for having killed them. It's a depressing and predictable pattern that continued with Steve Jobs. Indeed, Adams produced an article on Steve Jobs' death so quickly (within hours of the announcement of Jobs' passing) that I have to wonder if he had already had it written and teed up, just waiting for Jobs to die. Whatever the case, Adams entitled his article, again predictably enough given his past history, Steve Jobs dead at 56, his life ended prematurely by chemotherapy and radiotherapy for cancer, which begins with a typical charge (from Adams):

It is extremely saddening to see the cost in human lives that modern society pays for its false belief in conventional medicine and the cancer industry in particular. Visionary Steve Jobs died today, just months after being treated for cancer with chemotherapy at the Stanford Cancer Center in Palo Alto, California. In recent months, he appeared in public photos as a frail shadow of his former self. The thin legs, sunken cheek bones and loss of body weight are all classic signs of total body toxicity observed in chemotherapy and radiotherapy patients.

Or, of course, it could have been the recurrent cancer progressing. Cancer does that, you know.

Adams then goes on and on about how gaunt Jobs looked in his last few public appearances, and, indeed, it's true. Jobs did start to look quite unhealthy in the time leading up to his liver transplant in 2009, and, even after recovering from his surgery, he never quite looked the same; certainly his gaunt appearance never quite rebounded. In public photos, Jobs never looked truly healthy again, and speculation abounded about the cause. Again, I've discussed this in detail multiple times before, most recently in my repost. In 2008, I speculated that maybe he had dumping syndrome from his Whipple operation, and this was before his liver transplant was ever revealed. After his transplant, the reason was less clear.

Be that as it may, Adams then concludes, again quite predictably for him:

In other words, there is no question that Steve Jobs underwent multiple conventional cancer treatments, including surgery, chemotherapy and radiotherapy.

In the end, however, even Steve Jobs could not overturn the laws of biochemistry. When you poison the human body, the result is the deterioration and eventual shut down of the body. Chemotherapy does not work! This fact should now be obvious, and yet every year, more and more people choose chemotherapy to their own demise -- people like Farrah Fawcett, Peter Jennings, Patrick Swayze, Michael Douglas and many others (http://www.naturalnews.com/027047_c...).

Don't they see that conventional cancer treatments do not work?

And:

Yet his remaining life was stolen from him by the cancer industry and its poisons. This is yet another frustrating example of how the modern medical system harms our society. It steals from us the longevity of visionary individuals who have so much more to offer our world in terms of creativity and innovation.

Of course, you can't blame the cancer industry for causing Jobs' cancer in the first place. Some other cause had to have been present to get the cancer growing -- probably a combination of nutritional deficiencies and exposure to environmental toxins. And yet the cancer establishment says nothing to people about correcting obvious nutritional deficiencies that lead to cancer, even when most cancers can be prevented for mere pennies a day.

The truly ironic thing, of course, is that Jobs lived a lifestyle very similar to the one that Adams touts as an all-purpose cancer preventative. For example, Jobs was widely reported to be a vegan. Indeed, Jobs' veganism was such "common knowledge" that comedy pieces were written about it. Actually, it's not clear that Jobs really was a vegan. For instance, it's been widely reported that he was in fact a pescatarian, which is a vegetarian who will sometimes eat fish, and was a Zen Buddhist. It is, however, clear that Jobs did not eat meat and that the animal rights group PETA has paid homage to him after his death for being a vegetarian and sympathetic to animal rights causes. The point, of course, is that Steve Jobs ate a diet and lived a lifestyle far more similar to the kind that Adams touts as a cure-all or prevent-all for cancer than the "typical" fat- and meat-laden American diet that Adams lambastes.

It goes further than that, though.

As I discussed back when it was first revealed, when Jobs was first diagnosed with his cancer, he decided to try to avoid surgery by undertaking a special diet. Indeed, in the Fortune story (The Trouble With Steve Jobs) that first reported this, Jobs was described as "skeptical of mainstream medicine" and having decided to "employ alternative methods to treat his pancreatic cancer, hoping to avoid the operation through a special diet." In fact, this is how the 2008 article described the situation:

Jobs' tumor was discovered in October 2003. He had been getting abdominal scans periodically because of a history of intestinal problems. His doctors noticed a growth that turned out to be an islet cell neuroendocrine tumor - a rare and operable form of pancreatic cancer. With surgery, his long-term prognosis would be good.

But Jobs sought instead to treat his tumor with a special diet while launching a lengthy exploration of alternative approaches. "It's safe to say he was hoping to find a solution that would avoid surgery," says one person familiar with the situation. "I don't know if he truly believed that was possible. The odd thing is, for us what seemed like an alternative type of thing, for him is normal. It's not out of the ordinary for Steve."

It's not clear just what, exactly, this "special diet" was. I do hope that Walter Isaacson's upcoming biography of Jobs, scheduled to be released October 24, reveals a bit more about Jobs' diet around that time and what other "alternative" cancer therapies, if any, Jobs pursued during those nine months, give that he did know that Jobs was dying several weeks ago because Jobs told him so in an interview and given that he was also given unprecedented access to Jobs and the people close to him during the last few years. It would also be interesting to know more about the events surrounding Jobs' liver transplant in 2009. Be that as it may, if anything, Jobs might well have decreased his chances of survival by pursuing exactly the sort of non-science-based program of diets and supplements that Mike Adams routinely holds up as the sort of regimen that will cure or prevent cancer.

There is, however, the chance of taking this argument, namely that Jobs might have died because of his embrace of non-science-based treatments, too far in the other direction. Unfortunately, there are a journalist and a skeptic who should really know better who do just that, using Steve Jobs' death as evidence of the harm that alternative medicine can do. Now, given my reputation as someone who relentlessly applies the cudgel of reason, science, and critical thinking squarely to the back of the head of woo on a regular basis, you just might think that I would heartily approve of this line of argument. You'd be wrong, not because I have any qualms whatsoever about appropriately blaming alternative medicine when someone pursues alternative medicine and ultimately dies. (I have, after all, done it myself on several occasions.) The key word is "appropriately," and the reason that I'm not so hot on using Jobs' death as a "negative anecdote" against "alternative" medicine is because I'm not so sure how appropriate doing so is in Jobs' case. While Jobs certainly didn't do himself any favors by waiting nine months to undergo definitive surgical therapy of his tumor, it's very easy to overstate the potential harm that he did to himself by not immediately letting surgeons resect his tumor shortly after it was diagnosed eight years ago. Unfortunately, Brian Dunning does exactly that in his post A Lesson in Treating Illness (also posted over at Skepticblog):

I'm sad that today I'm adding a slide to one of my live presentations, adding Steve Jobs to the list of famous people who died treating terminal diseases with woo rather than with medicine.

Except that Jobs didn't; at least, he didn't for the most part. Aside from the initial nine months, Jobs largely relied on conventional therapy to treat his disease. In fact, he underwent the most invasive, cancer aggressive operation (the Whipple pancreaticoduodenectomy), which is one of the biggest, if not the biggest operation, that surgical oncologists do. Then, after his tumor recurred in his liver, he underwent the biggest, mot technically complex type transplant operation there is, a liver transplant, which, let me tell you, was not made any easier by his previous Whipple operation. Having scrubbed on several liver transplants when I was a resident, I can only imagine how difficult it was to do a liver transplant in the face of such extensive prior surgery. When his cancer apparently recurred a second time earlier this year, Jobs was seen going to the Stanford Cancer Center in Palo Alto, California, looking frail and thin. Tabloid reports on the sightings came complete with speculations from an unethical physician who, based on photos of Jobs leaving the cancer center, proclaimed him "terminal" and predicted that he had only six weeks to live.

Moreover, the other "alternative" therapy reportedly pursued by Jobs in Switzerland was a therapy based on radiation therapy, you know, the kind of therapy known to the likes of Adams as "burning" the cancer. In any case, Jobs apparently traveled to the University Hospital of Basel in Switzerland to receive a form of "hormone-delivered radiotherapy." For some reason this is being portrayed in the press as somehow "alternative." In reality, from what I can tell, it's science-based, but experimental. Basically, in this therapy, radioisotopes are linked to a peptide hormone, receptors for which are found on the tumor being treated. The hormone then binds to the receptors, bringing the radioisotope close enough to the tumor cells to deliver a high dose of radiation. These can be used for imaging and therapy, depending upon the radioisotope linked to them. Examples include glucagon-like peptide-1 and other targets for directing radiation to insulinoma. This therapy is not "alternative," although it's not standard of care; it's definitely science-based.

All of this leaves the sole remaining question regarding the issue of "alternative" medicine and cancer in the case of Steve Jobs as: Did Jobs significantly decrease his chance of surviving his cancer by waiting nine months to undergo surgery? It seems like a no-brainer, but it turns out that that's actually a very tough question to answer. Certainly, it's nowhere near as certain as Dunning tries to make it seem when he writes things like:

Eventually it became clear to all involved that his alternative therapy wasn't working, and from then on, by all accounts, Steve aggressively threw money at the best that medical science could offer. But it was too late. He had a Whipple procedure. He had a liver transplant. And then he died, all too young.

After over seven years of science-based treatments that prolonged his life.

One has to be very, very careful about making this sort of argument. For one thing, it could not have been apparent that it was "too late" back in 2004, when it became clear that Jobs' dietary manipulations weren't working. For another thing, we don't know how large the tumor was, whether it progressed or simply failed to shrink over those nine months, and by how much it increased in size, if increase in size it did. Again, I hope that information will be revealed in the Jobs' biography; such data would go a long way in clarifying just how much, if at all, Jobs might have compromised his chance for cure by delaying. Right now, we just don't know enough to make even a good guesstimate. Based on what we do know now, the thing that has to be remembered is that neuroendocrine tumors of the pancreas tend for the most part to be fairly indolent, slow-growing tumors. In fact, reporter Sharon Begley gets it closer to correct when she describes the situation thusly:

Even those that have been present for years, and in some cases decades, often stay safely confined to the pancreas. This kind of cancer can be so indolent that patients often die with it than from it. Although an estimated 2,000 to 3,000 people in the U.S. are diagnosed every year with neuroendocrine tumors of the pancreas, autopsies find the disease in hundreds more--people who were apparently not harmed by this very slow-growing cancer.

In other words, it's very much overstating the case to write, as Dunning does:

As he dieted for nine months, the tumor progressed, and took him from the high end to the low end of the survival rate.

We don't know that this was the case, and we certainly can't say that for sure--or even with a great deal of certainty. To reiterate, I would certainly agree that Jobs did himself no favors by waiting. If I were his physician or the surgeon to whom he was referred, I would have done my best to talk him out of such a course of action, but I would do so more out of the uncertainty of not knowing how fast his tumor would progress. So, is it possible, even likely, that Jobs compromised his chances of survival? Yes. Is it definite that he did? No, it's not, at least it's not anywhere as definite as Dunning makes it sound. In fact, based on statistics alone, it's unlikely that a mere nine months took Jobs "from the high end to the low end of the survival rate," as Dunning puts it. That's just not how insulinomas usually behave from a biological standpoint. They're too indolent, and that's not even taking into account issues of lead time bias and other confounding factors that would make comparisons of operating early versus operating later not as straightforward as one might think.

It turns out that Sharon Begley's story is far more accurate in its assessment of Jobs' indulgence in alternative medicine, but even she stumbles a bit:

Not that the surgery was a walk in the park. In many cases, says Kim, "you can just remove the tumor with a little of the surrounding [pancreatic] tissue." But Jobs's was not such a simple case. He underwent an operation called a modified Whipple procedure, or a pancreatoduodenectomy, Fortune reported. The surgery removes the right side of the pancreas, the gallbladder, and parts of the stomach, bile duct, and small intestine. The fact that so much more than the pancreas itself had to be removed suggests that Jobs's cancer had spread beyond the pancreas. The cancer might have already spread by the time it was discovered in 2003, though Jobs's sanguine description of his prognosis suggests that if that were the case, the metastasis might have been so small-- "micrometastases"--as to be undetectable. Alternatively, the cancer could have spread during the nine months that Jobs was experimenting with nonstandard therapies.

No, the fact that more than the pancreas had to be removed means that the head of the pancreas had to be removed, which requires removing parts of other organs to do. The tumor could be a centimeter in diameter or several centimeters in size. It wouldn't matter; if the tumor is in the head of the pancreas and the surgeon judges that it can't be safely enucleated for whatever reason, be it proximity to the pancreatic duct or whatever, then the head of the pancreas has to come out. If the head of the pancreas has to come out, then from a strictly anatomical standpoint achieving that resection requires removing the duodenum, often part of the stomach (although pylorus-sparing Whipples can preserve the whole stomach), the gallbladder, and part of the bile duct, as I pointed out again yesterday. It says very little about the extent of the tumor that Jobs required a Whipple, although it does say a lot about the location of the tumor. That the surgeon opted to do a Whipple also tells us that there probably wasn't any evidence of metastatic spread of the tumor at the time. Otherwise, I doubt the surgeon would have recommended as huge of an operation as a Whipple just for palliation. Indeed, Whipple operations are generally done with curative intent and only very rarely done for palliation. The morbidity is too high to justify doing such an operation when it can't save the patient's life. In fact, it's not unreasonable to infer from the willingness of the surgeon to do a Whipple operation that, as far as could be determined, Jobs' tumor was still restricted to the head of the pancreas and thus still potentially curable, even after nine months' delay. Also take into account that Jobs's tumor was originally diagnosed by a CT scan done for unclear indications, meaning that it detected the tumor probably far earlier than it would have been detected from symptoms, and Jobs should have had an excellent prognosis.

As we all know now, he did not.

If there's one thing we're learning increasingly about cancer, it's that biology is king and queen, and that our ability to fight biology is depressingly limited. In retrospect, we can now tell that Jobs clearly had a tumor that was unusually aggressive for an insulinoma. Such tumors are usually pretty indolent and progress only slowly. Indeed, I've seen patients and known a friend of a friend who survived many years with metastatic neuroendocrine tumors with reasonable quality of life. Jobs was unfortunate in that he appears to have had an unusually aggressive form of the disease that probably would have killed him no matter what. That's not to say that we shouldn't take into account his delay in treatment and wonder if it contributed to his ultimate demise. It very well might have, the key word being "might." We don't know that it did, which is one reason why we have to be very, very careful not to overstate the case and attribute his death as being definitely due to the delay in therapy due to his wanting to "go alternative." It's also important to remember that, as much of a brilliant visionary Jobs was, even brilliant visionaries can make bad decisions when it comes to health.

oracknows Thu, 10/06/2011 - 21:00

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fwiw, and not worth much I am sure, I posted a comment at skeptoid's blog yesterday that said much the same thing as the gist of your analysis here. Skeptoid chose not to take that comment out of moderation.

Thank you for a sensible view. I was banging on about this yesterday. For a start we don't actually even know for a fact that Jobs used any kind of alternative therapy or diet. His obsessive privacy means that all we have is journalistic speculation as far as I can see. Secondly he is hardly a good example of the harm that altmed can do considering the amount of real treatment he underwent. In fact, we know virtually nothing about his health other than he died of a form of cancer.
Sceptics should rely on facts, not speculation.

Thank you, thank you, THANK YOU for emphasizing that we simply do not yet know what Mr. Jobs did or did not do. This is one of the only sensible things Iâve read on the topic so far. I protested yesterday, and have seen alarmingly few signs of other skeptics reserving judgement until we know the facts of the case.

It is a black eye for the entire skeptical community that, apparently, all so many of us could only see in Dunningâs allegation was a juicy opportunity to confirm our bias. And thereâs the real skeptical lesson here: a rather sobering reminder that no one is immune to cognitive distortions. This is just as sad as the unconfirmed possibility that Mr. Jobs might have disastrously delayed effective treatment.

By far the best commentary I've read on this so far, good work Orac!

If Jobs' story from the Stanford speech is accurate, and the doctor wept in relief after the biopsy that revealed the type of cancer he had, after earlier telling Jobs to get his affairs in order (because he had little time to live), I'd think that might have contributed to giving Jobs an apparent signal that he had time to investigate other approaches.

Had Jobs initially been diagnosed with a different kind of cancer, not the usual pancreatic cancer that kills quickly, not the slow-growing neuroendocrine type, but somewhere in the middle, he might not have risked the alternative cures at all.

This exploitative anti-oncology crankery is par for the Mike Adams course, but otherwise I worry that he's slipping ever deeper into a paranoid alternative reality.

For instance, he has a column up on NatNews about jack-booted government thugs forcing their way into the homes of innocent Americans and confiscating their lemon trees, for apparently no other reason than that they're evil Fascists. Overlooked is the explanation that a bunch of people bought lemon trees from an online nursery using a source that was possibly infected with diseases potentially devastating to the citrus industry, hence the USDA stepping in.
I thought of this when I saw a Wall St. Journal article earlier this week about giant African snails overrunning Miami, and teams of official eradicators going house to house to remove the snails (which are eating everything in sight). It's believed that this latest outbreak may have been started by someone importing them for religious/healing rituals. In some cases the people being cured developed nasty stomach lumps after consuming snail mucus.

Any day now there should be a Mike Adams column condemning the totalitarian U.S. thugs who are confiscating Magical Healing Snails on behalf of Big Pharma.

Thanks for the moderation. I saw Dunning's response and it caught me by surprise. I was sitting on it and withholding judgment until you or Dr Novella had a chance to respond. Sounds like I made the right call and we should wait until more data comes in.

Thanks again.

One rumor the "special diet" was a macrobiotic diet drawn up by his wife.

There might be some truth to Jobs being a vegan - I was at Apple during the time Jobs came back to Apple in 1996/1997. The company cafeteria within weeks of his returning dramatically expanded and improved its vegetarian and vegan menus.

This is the best article I've seen about the topic so far. Very rational and science based. I really appreciate that instead of grabbing an opportunity to rant about alt med, you stayed consistent and handled the topic in reasonable manner. Much classier than the ghouls.

@Dangerous Bacon - Well, that link effectively ruined my lunch.

Yeah, it's so easy to take stories like this and fit them to one's personal axe to grind, but the truth is that very few cases do the celebrities involved provide enough information for even armchair analysis. Patrick Swayze talked very openly of his pancreatic cancer; Steve Jobs, meanwhile, was so private that even many of his colleagues didn't know he had cancer until he actually had to take time off for the surgery. And he was a very private person, outside of his work with Apple. I didn't even know he had kids. (I figured it was probable, but I'd never heard a thing about them. And that's fine; celebrities who manage to achieve privacy have something far more precious than any millions they might be earning.)

Did he spend too much time on alt med? None of us knows. We all have an opinion, of course, but it would be hard enough for his own doctors to predict the might-have-beens, and they actually know the details of his disease.

I am reminded suddenly of the recent death of Elizabeth Sladen, the actress beloved for her portrayal of Sarah Jane Smith on "Doctor Who" and assorted spinoffs. She had battled cancer for a while, apparently, but even her costars and producers had no idea until they were notified that she had passed away. She had kept her private life and her professional life separate; when she was being paid to work, she worked, and she worked hard. I think Steve Jobs was a lot like that as well, at least in terms of work ethic. Health problems are not relevant unless they are impeding the work, so until they do, keep plugging away and focus on your job.

Islet cell tumors (or pancreatic endocrine neoplasms as they are now called) comprise a spectrum ranging from indolent, low grade tumors resembling classic carcinoid tumor to highly aggressive tumors resembling small cell carcinoma. Of course, we don't know what Steve Jobs had, but I think that there are scenarios in which a nine month delay in treatment would have a significant impact on a patient's chances of long term survival.

Jobs had an insulinoma. These tend to fall on the more indolent side of the spectrum. In any case, I'm not saying there aren't scenarios where a nine month delay wouldn't make a difference. I'm saying that, based on what we know of Steve Jobs' case, nine months probably didn't make much of a difference.

Great article, Orac.

@#1 anon:

I can't say I'm surprised at Dunning's or his moderator's action. This probably makes me a traitor to the skeptical movement, but I've never been that impressed with Dunning.

IIRC, in a early Skeptoid, he stated he didn't post his research via show notes as he felt it was up to the listener to verify what he was saying. I believe that's changed since then.

Another red flag for me is his tendency to point out how "controversial" his views are. In my admittedly anecdotal experience, people who say that tend to be obsessed about not being politically correct at the expense of accuracy.

Don't get me wrong; Dunning does have some interesting things to say. His dustup with Bug Girl over DDT being an exception, I just wonder sometimes if his skin is much thinner than many skeptics care to admit.

Interesting essay.

This case initially made me wonder if it shares any common thread with a number of other celebrity cases where the celebrities would have been better off if they had just gotten standard care. While we may never get the full picture of Jobs' illness, what I would find most interesting of all is know Jobs' thoughts about diet and CAM vs. medicine.

What has been disturbing me lately is the new woo meme: start with woo. As we know many of the so-called cures touted by alt med ( e.g. Suzanne Somers) have curative SB surgery *first*. But they attriibute their success to the subsequent nonsense.

While I haven't heard Null pontificate yet, you can be sure that Mr Jobs' death will be used as a selling point for cancer cure products - how-to books and films, supplements- before he's dead a week.

As Mike Adams mentions, it's tragic how Michael Douglas met his demise from chemotherapy. However, he's pretty active and good looking, considering he's dead.

Is there any evidence that Jobs ever had chemotherapy of any sort? There's no real good standard chemotherapy for neuroendocrine pancreatic tumors (though I think mtor inhibitors may have some efficacy) and it sounds like he went with surgical options for the most part.

The title is incorrect. It should be "Steve Jobs, neuroendocrine tumors, and iAtrogenesis"

This case initially made me wonder if it shares any common thread with a number of other celebrity cases where the celebrities would have been better off if they had just gotten standard care.

It's been my observation that celebrities often get substandard medical care - Michael Jackson, for example. I think a lot of it has to do with celebrities surrounding themselves with toadies who enable them, whether it's with Woocare, abuse of prescriptions, addictions, ill-advised plastic surgery, etc.

What I find interesting is the statement made by Jobs' authorized biographer about the reason for giving him unprecedented access to Jobs..."so that his children would know him...because he wasn't always 'there' for them during their early childhood". Walter Isaacson, the biographer also had interviewed Jobs during the end stages of his illness and it is reported that the length of the book is expanded.

No matter what is revealed in the expanded book about "alternative" treatment, the woo meisters will "spin it" to conform to their theories of cancer and its treatment.

Why all the crying from the quack mainstream scientists? STeve jobs was diagnosed in 2003, operated on in 2004, and survived until 2011. By all scientific measurements, he was cured. Put up a stiff upper life, quacks. You cured him. lol!!!!!

I think a lot of it has to do with celebrities surrounding themselves with toadies who enable them, [...]

Yeah. My comment about Michael Jackson from around the time of his death was that part of his problem was that he was constantly surrounded by an ablative shield of yes-men. A whole lot of his life might have gone better if he'd had someone willing to say to him, "This is a bad idea."

"Aside from the initial nine months, Jobs largely relied on conventional therapy to treat his disease[.]"

Seriously?!?! If you think leaving a highly aggressive form of cancer essentially untreated for nine months isn't relevant to the question, you're deluding yourself. Nine months is between 50 and 100% of the total life expectancy. To dismiss nine months of inaction during the most critical window of treatment is not merely wrong on the science, it's pretty intellectually dishonest.

S.W.: (Re)read the post, please. The point is that Jobs didn't have "a highly aggressive form of cancer": he had a much less aggressive form of cancer in the same location. Yes, they are both referred to casually as "pancreatic cancer," but that doesn't mean they're the same thing.

and yet every year, more and more people choose chemotherapy to their own demise -- people like...Michael Douglas...

Douglas sure looks good for a dead guy.

TBruce @16 and @25

Douglas sure looks good for a dead guy.

This could be a sign of the impending zombie apocalypse.

First, let me say I've been crying for a couple of days now on and off about the loss of this great icon. I wouldn't be who i am today if it weren't for his inventions.
1. We're taking his word and the journalists word for it about the cancer. I'm not calling anybody a liar, but...
2. There's nothing wrong with the Macrobiotic diet. When followed correctly, it can have very good health effects for certain people. It did not contribute to making his condition worse.
3. There is documented proof that "alternative" therapies work and prolong life.
4. Chemo is hard on the immune system. If he did have it after the Whipple, his immune system may have already taken a severe hit. Now that his body had already produced a tumour and there was "cancer" imprinting in his digestive system, it could have re-occurred.

Living a very intense and stressful life, especially around things that emit radiation can lead to health issues.

I have had two friends now die of pancreatic cancer. The first was given 3 months to live and he lived 3 years.

I have had one non-blood relatives die from cancer, one live, and one blood relative die, one smoked and worked in the energy sector, one is living and plays golf daily, works out and is 80, the last drank, smoked, ate poorly and did recreational drugs. Only one received chemo - the first. The second is still living as said (and does "alternate" therapies) and the third decided against chemo.

With the first - they say "the chemo killed him"
With the second - he'll die with it
With the third - we didn't catch it until it was too advanced.

All are men with high stress.

You'll never know unless you can talk to the person and get them to tell you the truth.

What can we take away?

Allison,

The macrobiotic diet does not prevent or cure cancer. Followed to the core, it's a dangerous diet that can lead to severe malnutrition. If you decide to take bits of the macrobiotic diet and simply incorporate it into your normal diet, then you may or may not have health benefits, depending on what your normal diet consists of.

Above all else, however, the macrobiotic diet is based on false premises. The concept of yin and yang, while a nifty myth, is not actually real. Food does not have properties of yin and yang, and ensuring that your diet consists of proper yin and yang balanced foods will not make you healthier.

Yin and yang have nothing to do with diet or health.

@ allison burgueno: I visited your url website and you say you want to start a business as a consultant to schools to teach school children about growing their own food and self-sufficiency.

You also state you support a local dairy that sells "raw goat milk".

I suggest you take some courses about food safety and nutritional values of "raw milk"...before you promote yourself as an expert:

Raw Milk & Pasteurization: Debunking Milk Myths

While pasteurization has helped provide safe, nutrient-rich milk and cheese for over 120 years, some people continue to believe that pasteurization harms milk and that raw milk is a safe healthier alternative.

Here are some common myths and proven facts about milk and pasteurization:

* Pasteurizing milk DOES NOT cause lactose intolerance and allergic reations. Both raw milk and pasteurized milk can cause allergic reactions in people sensitive to milk proteins.
* Raw milk DOES NOT kill dangerous pathogens by itself.
* Pasteurization DOES NOT reduce milk's nutritional value.
* Pasteurization DOES NOT mean that it is safe to leave milk out of the refrigerator for extended time, particularly after it has been opened.
* Pasteurization DOES kill harmful bacteria.
* Pasteurization DOES save lives.

(FDA-The Dangers of Raw Milk)

3. There is documented proof that "alternative" therapies work and prolong life.

Apparently we are supposed to take your word for this.

Living a very intense and stressful life, especially around things that emit radiation can lead to health issues.

What kind of radiation? I see a scare word here.

jack-booted government thugs forcing their way into the homes of innocent Americans and confiscating their lemon trees

"It's part of Moriarty's cunning plan."
"How do you know that, Holmes?"
"A lemon tree, my dear Watson."

@ Militant Agnostic:

The zombies will descend upon Asbury Park, NJ Oct 21-3. They do every year. ( see njzombiewalk.com)
Glad I'll be elsewhere.

Why are nearly all my comments automatically subjected to moderation approval? I am not, nor have I ever been a troll, a sock-puppet, or a spammer.

In fact, of my previous four comments (one of which is currently held up for approval), the only one that didn't need mod approval was the one with the link.

Did the rules for moderation change in the past few months, or am I on some sort of list?

Sorry for the off-topic post.

Militant Agnostic & TBruce:

You mean zombie apocalypse & dead celebrities like Bill Murray?

(Spoiler warning if anyone (a) hasn't watched Zombieland and (b) still wants to do so unspoiled.)

1. We're taking his word and the journalists word for it about the cancer. I'm not calling anybody a liar, but...

Yeah, right. There's zero reason to make such a comment except to call him a liar.

2. There's nothing wrong with the Macrobiotic diet. When followed correctly, it can have very good health effects for certain people. It did not contribute to making his condition worse.

[citation needed]

3. There is documented proof that "alternative" therapies work and prolong life.

[citation needed]. Especially since, once they're scientifically validated, they become part of science-based medicine and cease to be "alternative."

4. Chemo is hard on the immune system. If he did have it after the Whipple, his immune system may have already taken a severe hit. Now that his body had already produced a tumour and there was "cancer" imprinting in his digestive system, it could have re-occurred.

Sounds like you're claiming that chemo caused the recurrence. [citation needed]

Living a very intense and stressful life, especially around things that emit radiation can lead to health issues.

OK, I'll bite. To what specific radiation exposures are you referring? Keeping in mind that everyone is exposed to a good deal of ionizing radiation (cosmic rays being generally the dominant source of exposure) and so to be relevant any exposure must be significant in comparison to that background.

@30 Herr Doktor: Oh god.

What can we take away?

That you're a fan of unverifiable anecdotes and blanket statements unsupported by data?

Steve's choices and my choices are ours alone. I don't push raw milk on others, certainly not other people's children. I'm not saying I'm an expert, I believe in empowering future generations to be self-sufficient, educated enough to make their own choices and not those prescribed for them by the FDA. I do not pretend to be a doctor or give expert advice on medicine. I think that the idea of learning where food comes from is key for the health of future generations.

Non-ionizing radiation - is supposedly the "safe" kind, yet we're recommended to limit our exposure.

I'll miss following Jobs, really I will. Goodbye, farewell, goodbye.

Adams has made a not-so-savory name for himself for ghoulishly (and gleefully) taking advantage of the death of celebrities

One thing I have learned from Adams is that only celebrities ever have cancer. Or if it happens to non-celebrities, their survival or death is of no interest to him.

In some cases the people being cured developed nasty stomach lumps after consuming snail mucus.

"Alimentary, my dear Watson."

As I said - I'm not disrespecting anyone, if it is so that the tumour easily operable and was non-aggressive then he should have been in the clear?
in his Stanford speech he said, "I'm fine now."
We all know that was not true.
I am not saying that Macrobiotics cures cancer.
People confuse modern macrobiotics with veganism. Modern macrobiotics allows some animal protein to balance the vitamin deficiency issues with veganism.
http://macrobiotics.co.uk/cancer.htm
http://www.ohsawamacrobiotics.com/index.php?option=com_content&view=art…
http://www.gerson.org/

Steve's choices and my choices are ours alone. I don't push raw milk on others, certainly not other people's children.

"Why do you suddenly mention other people's children?" Tom asked chattely.

Non-ionizing radiation - is supposedly the "safe" kind, yet we're recommended to limit our exposure.

Why yes, to UV radiation which can cause thymine dimers and induce mutations.
Anything lower energy is pretty much harmless. You don't see people wanting you to limit your visible light exposure.

Allison, I checked out your links. The Gerson link is particularly amusing. It's a juicer diet (consuming raw "organic" fruits and vegies blended into juice); and it claims that eating nearly 20 pounds of fruit and vegies (only) per day will cure cancer.

To help with the process, they "detox" (as a toxicologist, I can tell you that detoxification programs like the one Gerson is selling is completely worthless and will not rid your body of toxins). Their detox program is coffee enemas.

Oh, and Gerson works, because, "we treat the cause of the disease, not just the symptoms." That should tell you right away that they're nothing but a snake-oil salesman.

It seems that Allison is promoting some "odd" pseudoscience "commercial" sites.

(hint to Allison) When we ask for citations...we don't expect links to commercial sites that hawk macrobiotic books and tapes or to the notorious Gerson cancer treatment site. Why not try PubMed for studies that appear in peer reviewed journals, the American Dietetic Association, the National Cancer Institute or American Cancer Society websites for "citations".

What can we take away?

hmmm wait and see would be better approach rather speculating or commenting on cause of death,could not believe that such a great sense person can undergo so high in confidence and let himself in danger ,so for me its kinda unbelievable but i feel waiting for biography is better option.

2. There's nothing wrong with the Macrobiotic diet.

One might say the same about the Paleo Diet* as well as a few other of the less loony orthorexias. In fact I have a hunch that if one was say, an Inuit the latter might be much healthier than the former.

*Of the various orthorexias, this is probably the closest to what I eat. However, I recognize that it is based on the naturalistic fallacy and the separate evolution of lactase persistance in Northern Europe and East Africa shoots a hole in the argument that we have not evolved to adapt to agriculture.

allison: "1. We're taking his word and the journalists word for it about the cancer. I'm not calling anybody a liar, but...

I know, you're Just Asking Questions.

"There is documented proof that "alternative" therapies work and prolong life."

Work for what? Prolong life in what situations? Pancreatic cancer? Think again.

"Chemo is hard on the immune system."

Cancer isn't great for the immune system either.

"You'll never know unless you can talk to the person and get them to tell you the truth.

What can we take away?"

That anecdotes are basically worthless. But as I always say, live fast, die young and leave a wasted, prematurely aged corpse.

"What can we take away?"

We only pass this way once...and it we play our cards right...once is enough.

"What can we take away?"
It depends on the restaurant.

"Chemo is hard on the immune system."
Cancer isn't great for the immune system either.

As Orac noted in the previous thread, immunosuppressive post-transplant drugs have a side-effect of, umm, suppressing the immune system.

If Jobs didn't get around to announcing whether or not he had undergone chemotherapy, I'm happy to accept that it was his own business.

I thought I might change the subject a tad and say that I have (and still have, thankfully) an old friend who underwent a Whipple when they found a mass on his pancreas basically by accident -- by the grace of His Noodly Appendage, it turned out to be benign.

But the Whipple was just incredibly hard. Apparently, they practically saw you in half and then stitch you back together after doing a whole lot of internal remodeling. He's a physician himself, and he said that surgeons visibly wince when he tells them he needed a Whipple.

It's conceivable that any decision by Jobs to delay his surgery may have been motivated by a wish to avoid this really fearsome procedure if possible.

Sickeningly enough, Adams follows up the Jobs story with one about a nutritionist- Fred Bisci- who "could have cured" the innovator because he had cured his own brother of pancreatic cancer until he backslid.

This is all too common amongst the woo-slingers : perpetrating diet myths, reaching out to celebrities who are ill ( e.g. Aretha Franklin), and blaming people who die of cancer.

Your premise here is flawed, as possibly was Steve Jobs. The premise being that an alternative medicine treatment should "kill" the cancer in 9 months. If your going to go alternative, you have to commit. It took the body a number of years for the cancer to develop. Its simple logic that it will take the body a number of years to "fight" the cancer.

I'll tell you one thing that you could definitely produce thousands of strong studies for, mr. "evidence based medicine" (i.e. mr. selectively ignore all evidence for anything that is not purely conventional or mildly experimental allopathic medicine.".

.... the effects of immunosuppressing drugs and having an entirely new liver that the immune system would try to fight if it wasn't knocked nearly into nonexistence, is certainly FAR more stressful to the immune system than the cancer itself.

Steve was close friends with Dean Ornish who advocates the role of diet in prevention, and vegetarianism. This story goes deep, i'd love to find out more. From what i've read about Dean Ornish he was a dude who in med school wanted to kill himself until he met an indian swami and went on a spiritual path.

The problem, in my opinion, is that Steve was probably being advised by guys like Dean who are medical doctors who know that a healthy lifestyle can prevent and sometimes reverse disease, but are not willing to take the next logical step and really look deeply into alternative medicines beyond the accepted CAM treatment which isthings like eating lots of vegetables, meditating etc. He needed to NOT be doing chemotherapy or surgery and in the case of pancreatic cancer taking large quantities of high quality digestive enzymes, stepping down from the role of ceo of a multibillion dollar company to resolve any emotional issues he may have had (which are indicated to have definitely existed in the reports already coming out about how he wanted his biographer with im in the time leading up to his death in order to try to explain to his kids why he wasn't always there for them) , doing extensive blood testing (that most hospitals do not ever do) to make sure all nutrients and hormones were at optimal levels, drinking large quantities of fresh raw juice, etc.

He also should have donated a large percentage of his fortune instead of just leaving massive amounts of money to his family that they will have no idea what to do with.

This is not to say that he was a bad man for not doing that, but I think coming closer and closer to a possible end to your life with a massive fortune accrued but not leaving a legacy of humanitarian efforts, just selling a bunch of cool looking well designed electronic devices, that is going to weigh on the subconscious mind.

What most of you people who are honest about it will finally realize eventually, that are clinging to your allopathic medicine, despite it's track record of both pushing the us closer and closer to bankruptcy and resulting in or at least coexisting in, an environment were disease of all kinds is rapidly growing not reducing - is that the mind IS an essential part of recovery from disease, and the science (which is in many cases actually already there if you look for it) will become more and more available and undeniable.

But of course, the followers of this blog will continue to regard everything with suspicion until it is brought to them by a doctor near you.

And the world keeps going on like that. Every advance in human kind was accompanied by tons of people staunchly defending the established ideas and modalities to the death, and scoffing at the claims of the wild eyed heretics daring to overturn old ideas.

Jonathan Browne:

Your premise here is flawed, as possibly was Steve Jobs. The premise being that an alternative medicine treatment should "kill" the cancer in 9 months.

Who is this directed to?

Orac said: "While Jobs certainly didn't do himself any favors by waiting nine months to undergo definitive surgical therapy of his tumor, it's very easy to overstate the potential harm that he did to himself by not immediately letting surgeons resect his tumor shortly after it was diagnosed eight years ago."

Also what evidence do you have for this statement: "But of course, the followers of this blog will continue to regard everything with suspicion until it is brought to them by a doctor near you."

Though I have a feeling you are new here, since you use the term "allopathic" like it has any real meaning aside from a derogatory term used for real medicine by quacks.

Browne, your last statement is called the Gallileo Gambit. "They were wrong about Gallileo, so they're wrong about what I believe in!" It's a flawed idea, as all sorts of heritical ideas are bullshit. There's nothing else in your post that hasn't been seen here before, and come up wanting.

What is the difference between the perceived world and the "subconscious" mind, Jonathan?

"Every advance in human kind was accompanied by tons of people staunchly defending the established ideas and modalities to the death, and scoffing at the claims of the wild eyed heretics daring to overturn old ideas"

As Carl Sagan put it;
"But the fact that some geniuses were laughed at does not imply that all who are laughed at are geniuses. They laughed at Columbus, they laughed at Fulton, they laughed at the Wright brothers. But they also laughed at Bozo the Clown."

Your post is so full of fallacies and tropes it is difficult to know where to start. If your religious beliefs are true what do you have to lose if you do a deep investigation onto why people say you are wrong? That would be an intellectually honest way to go. The fact is though, the more a person feels persecuted the more tightly they will cling to their religious beliefs.

I call them religious because they are more like faith statements in contrast to science where you would attempt to falsify your hypothesis rather than read only what backs up your beliefs. Hypotheses that cannot ever be disproven are not real science. This is true in law courts and in science. Are you saying that your beliefs are religious or are saying they science? If they are science then produce the proof or go away to your church of non-"allopathic" "medicine" [Just as true as Christian Science].

Orac, there's already an "unauthorized," but apparently very good, bio of Jobs out. Maybe it will have details you're expecting Isaacson to provide, which he likely won't. http://www.amazon.com/Second-Coming-Steve-Jobs/dp/0767904338

Let's see if I can run throught the options for alternative medicine:

1. Dead celebrity used chemotherapy= blame chemo

2. Dead celebrity used chemo and alternative medicine= blame chemo.

3. Dead celebrity used alternative medicine= take credit for him not dying even sooner.

David N. Brown
Mesa, Arizona

@ Jonathan: I visited your web page and I imagine you are feeling very down about your father who was diagnosed with mesothelioma. However, that is not a valid excuse for your accusations directed at Orac or any of the regular posters here.

Most of the posters here have a science background. We are well versed in the science of the practice of medicine and many of us are licensed clinicians, biologists, chemists and researchers. We went into our fields of study and our professions because of our sincere desires to use our education and our desires to leave this world a better place.

Orac has blogged extensively about well-known, "popular" alternative practitioners including your hero Dr. Dean Ornish.

It is obvious to all of us that you are simply not an expert in any field of medicine or science and that this discussion is beyond your capabilities. It is also beyond your capabilities to discuss the the costs of a highly technical and advanced medical system and its impact on the United States budget.

We will of course be asking you to provide some citations about the efficacy of "alternative" treatments from peer reviewed medical journals.

BTW, none of us practice "allopathic" medicine...we only practice science-based medicine.

Jonathan Browne @51

I hear a lot anger in your comment. Better watch that - it could be bad for your health.

You keep using the word allopathic - would you care to define it.

I also noticed that you close on the tired old Galileo gambit.

Regarding the radiotherapy in Switzerland, my admittedly knee-jerk reaction is that you may be giving reporters too much credit. I think it's likely that the reason they labeled that treatment as "alternative" even though it seems to be science-based to you is that they don't share your practice of drawing the line at whether a given treatment is based on scientific research or woo. They consider that radiotherapy to be a new way of thinking, outside the box, and believe that it is a challenge to the dogmatic orthodoxy of Western Medicine (boo!)
They think that homeopathy and Bio-Acoustics and psychic surgery are in the same class--new and challenging notions that are shunned by evil Western Medicine not because they don't work, but only because they are "not mainstream" and challenge the orthodox establishment. Thus, in their minds, the important thing to note about the two kinds of treatment is not their major difference (that one has at least shown promise in terms of actually working in a significant way when studied rigorously, and the others have failed that test for years if not decades or centuries) but what they see as their major similarity--that the Mayo Clinic and Johns Hopkins don't use them . . . . yet . . . . because they aren't taken seriously by The Establishment. The difference between a treatment that isn't widely used because it shows promise but has not been proven YET and a treatment that isn't widely used because it has been shown over and over again to hold zero promise and work zero times is completely lost on your average reporter. They're really good at deadlines, pretty good at judging an audience's reaction to content and presentation, and usually OK at creating a lede and drawing a reader in. It's asking a lot for them to be experts on everything else, too.

They consider that radiotherapy to be a new way of thinking, outside the box, and believe that it is a challenge to the dogmatic orthodoxy of Western Medicine [and is therefore "alternative"]

Don, I think you may be on to something, there.

Its simple logic that it will take the body a number of years to "fight" the cancer.

That is nice, as long as the cancer is sporting enough to allow you that time.

Jonathan Browne #51

If your going to go alternative, you have to commit. It took the body a number of years for the cancer to develop. Its simple logic that it will take the body a number of years to "fight" the cancer.

That's not simple logic, it's simplistic logic. Obviously adopting a healthy lifestyle is sensible at any time, and especially if you are unwell, but the idea that consuming more nutrients than are in an adequate diet (essentially what many alternative approaches to cancer entail) will somehow boost the body to superhuman levels of health that will kill cancer is just childish. We know it doesn't work like that. There is no good evidence that a greater than adequate intake of nutrients is beneficial (in most cases the body excretes the excess) and having higher than optimal levels of some nutrients can be damaging.

selectively ignore all evidence for anything that is not purely conventional or mildly experimental allopathic medicine

Please direct me to this ignored evidence. I have been looking for it for years, and everything I have seen so far is very disappointing when looked at closely.

the effects of immunosuppressing drugs and having an entirely new liver that the immune system would try to fight if it wasn't knocked nearly into nonexistence, is certainly FAR more stressful to the immune system than the cancer itself.

What do you base this on exactly? Are you an expert in the effects of an insulinoma that has metastasized to the liver? Do you even understand what an insulinoma is? You seem to be arguing that the potentially fatal hypoglycemia (low blood glucose) caused by an insulinoma is less damaging to the immune system than a liver transplant, which is plainly wrong.

He needed to NOT be doing chemotherapy or surgery

You are telling people with cancer that they should not have chemotherapy or surgery? You seriously think this will improve their chances of survival? If a patient with an insulinoma is not treated they will suffer from hypoglycemia that can cause brain damage or death. Suggesting that Jobs should not have had surgery is idiotic.

and in the case of pancreatic cancer taking large quantities of high quality digestive enzymes

Does that mean you are a fan of the Gerson/Gonzalez protocol for pancreatic cancer? The one that involves the patient spending most of their remaining days juicing fruits and vegetables, cleaning their juicer, swallowing supplement pills and having coffee enemas? The one that was tested in a clinical trial that found patients on conventional therapy lived three times as long as those on the Gonzalez protocol and had a significantly better quality of life?

the mind IS an essential part of recovery from disease, and the science (which is in many cases actually already there if you look for it) will become more and more available and undeniable.

I have looked, and what I have found are studies that show that people's states of mind seem to have little effect on disease, even on cardiovascular disease. The idea that our emotional state has a large effect on our physical health is an attractive one, but the evidence for it is sadly lacking. That doesn't stop it from being widely believed, as you have demonstrated.

Every advance in human kind was accompanied by tons of people staunchly defending the established ideas and modalities to the death, and scoffing at the claims of the wild eyed heretics daring to overturn old ideas.

Every one of these advances was accompanied by incontrovertible evidence. The claims you are making are implausible, and have been tested and found to be incorrect. It seems to me that you are the one staunchly defending your beliefs to the death in the face of strong evidence that they are wrong.

Orac, the author of this article said in 2008

"What Steve Jobs needed was for a doctor to get in his face and give him a dressing down of the sort that Jobs gives his employees, saying: "I know you're a genius when it comes to industrial design of computers, making technology products that people love, and running an animation studio. I know you'll be remembered as a giant in the history of computing, digital music, and technology. Unfortunately, none of that means you know squat about medicine. Diet, herbs, and the other woo you're interested in will not stop this tumor. Nothing will heal it except cold, hard, surgical steel. "

http://scienceblogs.com/insolence/2008/03/woo_for_cancer_say_it_aint_so…

although I understand his trying not to take it too far in the current post

Jonathan is dead right when he says: "Every advance in human kind was accompanied by tons of people staunchly defending the established ideas and modalities to the death, and scoffing at the claims of the wild eyed heretics daring to overturn old ideas."

Defenders of homeopathy, faith healing (and all sorts of spiritual woo), radical diets, purges and useless supplements and patent medicines did stubbornly resist advances in medicine. Mainstream practitioners adapted to the new ways when it became clear through research and clinical practice that they were a vast improvement over the old ideas. Part of the problem now is convincing people who deny the efficacy of science-based medicines and want to rely on homeopathy, faith healing (and all sorts of spiritual woo), radical diets, purges and useless supplements.

Tom Wolfe in "Radical Chic" talked about members of the celebrity Left having "nostalgie pour la boue" (roughly, a longing for the gutter) which made associating with down and out characters "chic". Similarly, devotees of woo seem to have a longing for the good old days when infectious disease and sepsis ran rampant, modern lifesaving drugs and surgeries did not exist, and people lived shorter, more miserable lives without effective therapies for chronic and fatal diseases.

Jonathan will find that most posters here do not share that nostalgia for the days of primitive medicine.

Tom Wolfe in "Radical Chic" talked about members of the celebrity Left having "nostalgie pour la boue" (roughly, a longing for the gutter) which made associating with down and out characters "chic". Similarly, devotees of woo seem to have a longing for the good old days when infectious disease and sepsis ran rampant, modern lifesaving drugs and surgeries did not exist, and people lived shorter, more miserable lives without effective therapies for chronic and fatal diseases.

That's definitely a paragraph that captures how I see it. In the "good old days," disease was common. The idea that being in a state of health is "natural" and taken for granted today is only possible because of the continuing success of modern science-based medicine.

Nearly every altie I encounter lacks any sense of history. They treat time periods the way Hollywood does: Just change the fashions and the decor.

A few words about Ornish ( Orac has written about him):

I actually read one of his books ( and have heard that he's a good tennis player); he advocates diet and exercise as health measures, especially contra CV. So does SBM, nothing earth-shattering about that.

However, he does go over-board in assessing his approach's efficacy and applicability. I also recall detecting a whiff of aesceticism that woud fit him in nicely amongst alt med proselytisers' spirituality and Jobs' Buddhism ( " Desire leads to suffering". So cut it out, already!). Whereas our woo-meisters act the scold, forever wagging their fingers at mere mortals' weaknesses all-the-while triumphantly upholding their own sterling examples of perfectionacity, I suspect that Ornish is doing something rather similar in a more sophisticated manner due to his obviously greater intelligence, better education, and social savvy. I can picture him there at UCSF and in Sausalito, dressed all in white, working on his lobs, satisfied with himself as they ascend heavenward.

I seriously can't believe that watching your weight is a measure of your purity or character ( despite what Bill Maher is saying about a certain governor who shall remain nameless): it's about avoidance of certain ills. In my own case, I wonder how much is directly attributable purely to vanity ( even more than fear of CV, etc.): you see, I like wearing lovely clothes. I know , I know, another atheistic SB materialist, that's me... but hey, we are living in a material world, etc.

You gave me a new perspective to think about, but I still feel that those first 9 months were the most important. Anything after that was trying to fix a problem that could have possibly have been unnecessary.

Good article. I hadn't heard of Mike Adams before reading this, but having looked at his website its obvious he's just trying to make money off the sick and desperate. His name shouldn't be mentioned again during informed discussion.

Mr. Jobs at no time made it public that his alternative therapy approach following diagnosis shorted his life. It will be very interesting what is written in his biography in this regard.

The genius whose life was founded on unconventional thinking, finally succumbed his life to the thinking of conventional medicine. The terrible irony of it all.

Please, one an all, heed the message of this video. Self sabotage can strike anyone, no matter how great they may be:

Dr. Nicholas Gonzalez on Steve Jobs
http://www.youtube.com/watch?v=kqt3H5YnO1k&feature=uploademail

Blessings

Macrobiotic diet(as used in the western world) IS NOT a BALANCED diet(whether its from an excess or more likely lack of (specific) nutrients over the long term for healthy body metabolism,therefore can it NOT add to a healthy life only increase the risk of disease as insignificant as that risk may be.This makes it more utterly naive to assume the Inuit eskimos gain health benefits purely from their overall diet when the evidence points clearly to something in their lifestyles/environment.
Macrobiotics are just MORE FUD from logic/rationality free quacks, for DUMB celebrities Like Madonna "one DUMB shallow gimmick/platitude/cult lifestyle (bye bye Kabalah after taking years + years for her to realize it was screwing half her fortune away) after another" to follow + eulogise. This women believes (brainwashed by another RENOWN con artist fitness trainer) its healthy to starve herself of essential nutrients by everyday of her life restricting her total calorie intake to 700kcal - thank god such stupidity will kill her long before Jobs age)

@lilady

Your response to allison burgueno is illogical. Classic ad hominem attack (attack against the man).

"I visited your url website and you say you want to start a business as a consultant to schools to teach school children about growing their own food and self-sufficiency.

You also state you support a local dairy that sells "raw goat milk"."

You are not responding to her argument. You are simply attacking her credibility. You bring up her support for raw goat milk, which has nothing to do with her argument, and then you say, "I suggest you take some courses about food safety and nutritional values of "raw milk"...before you promote yourself as an expert."

Here you are stating that she is not an expert on food safety and therefore is not credible about raw milk, and therefore must not be credible about her argument posted above.

BAD logic!

Quote CG "You don't see people wanting you to limit your visible light exposure."

In practise YES because we still don't have the (practical) ability to filter out the UV from visible light(Vit D production) safely on a continual basis when/where sunlight is stronger.Sun block reduce visible light exposure levels to levels

Really allison burgueno resorting to posting under another name (Marie @ CHEESESLAVE) because you wouldn't know what logic(NON EMOTIONAL(incl CONCEIT like yours/BIASED THINKING),logical reasoning, the scientific method ( and the VALUABLE evidence it only allows for consideration)if they BEAT YOU AROUND the HEAD SENSELESS.

Unfortunately evolution simply has not provided you with a mind suitable for comprehending/applying with what so far we have had no better tool of logic to effectively/efficiently discover new knowledge/info AKA the scientific method, meaning ANY of your contributions will be endlessly ridiculed + treated with contempt for the UTTERLY misguided NONSENSE of a CHILD like mind they are - take some advice from someone who was using the scientific method to work life out before he was EVEN taught what the "scientific method" was - stop wasting OUR precious time, and your not so useful contributions to mankind + just STOP posting your irrational EGO-CENTRIC/STROKING DRIVEL! CHEERS!

Great article.

It's very ostentatious to say "he died of alternative medicine". It's a lot harder (and thus more accurate) to say "It's more complicated than that."

www.apenotmonkey.com

@ Ann Marie: Perhaps you could add something to the discussion about Allison's statements:

3. There is documented proof that "alternative" therapies work and prolong life.
4. Chemo is hard on the immune system. If he did have it after the Whipple, his immune system may have already taken a severe hit. Now that his body had already produced a tumour and there was "cancer" imprinting in his digestive system, it could have re-occurred.

In defense of Allison, how would you comment about "alternative" therapies working and prolonging life? Maybe you would like to provide some citations that Allison didn't provide.

Do you care to explain what Allison meant by cancer "imprinting" in his digestive system? I don't ever recall reading about "imprinting" of cancer.

You didn't read my next comment directed to Allison with her referral to commercial sites in lieu of citations from actual peer reviewed journals and her promotion of the Gerson "cancer cure". I also referred her to some reliable web sites for her to "research" about the particular type of tumor that Jobs had and the science-based treatments that are available:

"It seems that Allison is promoting some "odd" pseudoscience "commercial" sites.

It seems that you and Allison have both chosen to post off topic to advance your pseudoscience theories about natural foods and raw milk.

Why did you and Allison chose this forum and why haven't you actually commented about the cancer treatment that Jobs underwent?

Well Done.

Theo,

Please use the search function of this site for information about Dr. Nicholas Gonzales's treatment for pancreatic cancer and the state of evidence supporting it. if you have data that what Drs. Mercola and Gonzales say is actually supported by good data, please share.

I also recall detecting a whiff of aesceticism that woud fit him in nicely amongst alt med proselytisers' spirituality and Jobs' Buddhism ( " Desire leads to suffering". So cut it out, already!).

Now, now. Mahayana, at least, does not promote the cessation of desire per se but rather the understanding of nonduality. Once the identification of just who Avalokitesvara "is" is established, when suffering comes, just suffering. Form is form.

I thought that Jobs had the Whipple was just misnomer/misconception due to Jobs/crApple highly nefarious/deceitful/relentless greed reporting of his health to the media/share holders eg How on earth did CrApple get away with naming Jobs Chairman of the Board of Directors JUST a few weeks ago when he was practically BOTH FEET in the grave as those turned out to be GENUINE(no surprise to all but fanboi indenial cultists)TMZ pics graphically showed(to try to disguise his DIRE real health state as long as possible AS USUAL - he certainly died the DAY BEFORE the official statement so as not to overshadow their all $$$ important iPhone release - given what a flop it was they should have at least been honest once in their grossly unethical miserable existence when their founder dies BUT EVEN that is carefully dishonest + marketed - but a leopard never changes its spots + as they created there success in propaganda/hyperbole marketing (ask the Chinese kid that sold his kidney to but Jobs iTrash products)their habitual deceit will end up slitting their exceptionally evil throat to ) .

I don't think that there has ever been any official statement made by Jobs, crApple or anyone from his medical team that he HAS had the Whipple, has there? "urban myth" Jobs + cohorts wouldn't deny a wrong fact if it made little difference to share prices as it would just add further deception to those trying to find the truth + thus the degree Jobs/crApple would go to lie for HEARTLESS greed (well hardly surprisingly he should have DIED back before he had the $$$ immoral transplant INSTEAD he robbed the intended Liver recipient of the chance of life for his terminal cancer made more aggressive by transplants immunosupressents ie COMPLETE waste of desperately needed transplant liver for greedy selfish immoral wretched individual(BUT RICH $$$) on deaths door - a completely unscientific medically illogical transplant(saving someone who has (dead w/o transplant such is degree of cancer destroying liver) with transplant chance to have poor cancer riddled short life with PAID for donor organ + BENT UNETHICAL surgeon spewing lots illogical medical non facts (about being sure Jobs body was completely clear of cancer BEFORE the transplant LMAO seems it most certainly wasn't will the family sue the BENT surgeon for MALPRACTICE now or was a non-disclosure deal sealed before the op??? - why is this IMMORAL con not behind bars never mind banned from practising ...because there are more rich greedy people who want his services so he gets "protected" to practise his ethics free surgery for them)

Originally from: http://tech.fortune.cnn.com/2008/06/13/steve-jobs-life-after-the-whippl…

comments removed but can be found on:

http://webcache.googleusercontent.com/search?hl=en&gs_sm=s&gs_upl=11141…

Quote:

"Well this story is a bit misinformed. The variant of cancer that Mr. Jobs is believed to have had (well-differentiated pancreatic neuroendocrine tumor (ie. pancreat islet cell tumor)) occurs most frequently in the body or tail of the pancreas (where the highest concentration of islets are). As such the usual operation to be performed is a distal pancreatectomy. This surgery does not typically require bowel resection and has a much better recovery time than does the pancreaticoduodenectomy. The Whipple procedure (pancreaticoduodenectomy) is usually performed to resect a carcinoma that involves the head of the pancreas. It would be somewhat less likely for Mr. Jobs' carcinoma to have arisen in this location."

We really have to be the chief navigator of our own health, the captain in charge, with open eyes and ears but in the end the ultimate decision-maker. Jobs was used to being in charge. He most likely steered his own course as he thought best, using some combination of therapies. What more can we do, but pray? The jobs is not an easy one.

A bit OT, but the Fred Phelps and his band of scumbags are planning on picketing Steve Jobs' funeral in their never ending narcissistic quest for publicity.

Maybe the intestinal problems were caused by a vegan diet. Maybe the frequent intestinal scans precipitated the cancer. Maybe we need a study about whether the incidence of cancer and other maladies is higher amongst vegans.

@Narad #80:

Now, now. Mahayana, at least, does not promote the cessation of desire per se but rather the understanding of nonduality. Once the identification of just who Avalokitesvara "is" is established, when suffering comes, just suffering. Form is form.

Alan Sokal, is that you? ;-)

@ Narad:

Listen- I've hung out with Buddhists,
I've eaten rice with Buddhists,
I've even dated Buddhists,
That doesn't mean that I actually believe what they say.

That doesn't mean that I actually believe what they say.

Your hermeneutics is interesting to me and I would like to subscribe to your newsletter.

I noticed a few "alties" up thread blaming Jobs' cancer on his stress level. Questions for Orac, et al:

1) It was my understanding that on the whole, after many studies, there was no proven link between stress level and cancer? Many other diseases yes, but not cancer. Is this correct?

2)Further, that the original theory behind a stress-cancer link was that cancer risk would increase with a weakened immune system. But mouse studies where the mice had no or weak immune systems had no increased cancer rate, which also seemed to disprove that link. Is that correct?

This NYT article brought together what I had read:

http://www.nytimes.com/2005/11/29/health/29canc.html?pagewanted=2&_r=1

I'm just wondering if working oncologists tend to agree with it. The idea that the immune system doesn't even recognize most cancers was new to me, and certainly contradicts what most of the public believes, and all alties seem to believe.

Now I only know pancreatic cancer is one of the deadliest forms of cancer. http://bit.ly/reaflS

What really struck me as "odd" were the reports that Jobs' cancer was discovered during a "routine abdominal scan". Abdominal scans are not done "routinely"...they are done as part of a diagnostic work-up when the patient has some complaints of an ongoing nature. There was a paucity of information released by Jobs and his doctors at the time of the surgery and no additional information was ever released thereafter.

I suspect that Jobs may have had some early symptoms including pain, nausea and overproduction of insulin which left him weak and dizzy and with a weight loss and that the abdominal scan did discover a growth on the tail of the pancreas.

In sharp contrast to the paucity of information released about Steve Jobs neuroendocrine tumor is the information released about Justice Ruth Bader Ginsburg pancreatic tumor surgery in 2009...which was discovered during what was described as a "routine abdominal scan" done ten years after her colorectal cancer surgery.

In 1999 Justice Ginsburg underwent surgery, radiation and chemotherapy for colorectal cancer. At the time of her abdominal scan in 2009 a small 1 cm. growth was discovered in the body of the pancreas, which was excised along with an even smaller growth that was not seen on the scan. Part of the pancreas and the spleen were removed during the surgery. Pathological examination revealed that the 1 cm. growth was benign but the smaller growth was cancerous.

It appears that close to three years out from her surgery Justice Ginsburg has been cured.

Steve Jobs was very circumscribed about revealing his health issues and equally private about his personal life, which leads me to believe that nothing new will be revealed in the new authorized Isaacson biography.

@ Narad:

I don't have a newsletter altho' I edit and contribute to an ec wonk's intermittenly emergent investment newsletter** for clients; while it is supposed to be about investments, the bulk explicates people's stupid decisions and ideas about money.

** which shall remain nameless because I plug nothing involving friends/ relations.

I respectfully disagree with the authors pro-medical posturing, and ad hominum attack of Mike Adams.
In addition, vegetarianism is not the appropriate diet for people diagnosed with cancer. Mr. Job's adherance to this dogma early on in his discovery of the cancer, may have cost him his life.

Ms. Holman:

In addition, vegetarianism is not the appropriate diet for people diagnosed with cancer.

[citation required]

Also, where did Orac say Mike Adams was wrong because he is something, versus explaining why he was wrong? And ad hominem would be "Mr. Adams sell supplements, therefore he is wrong."

What I do see is extensive quoting of Mr. Adams, followed by why it is wrong.

Steve Jobs changed the way we view the world today, his genius has no limits and certainly his creations will always be remembered. Thank you Steve, rest in peace.

It's a waste of time speculating on the pathology of the tumor. Most pancreatic neuroendocrine patients live about six years and he lived eight. If you go to a neuroendocrine specialist, you generally live longer then the average. Jobs had two great neuroendocrine physicians nearby in Jeffrey Norton and George Fisher at Stanford. I'm not sure how much he used them if at all. To be clear, the much more typical kind of neuroendocrine tumor is called carcinoid and is found in the bowel and is typically very, very slow growing. Pancreatic neuroendocrine is generally faster growing but not like typical cancers. In fact most pancreatic neuroendocrine patients don't even image on an FDG-PET scan which measures tumor aggressiveness. The big question in my mind is why Jobs didn't immediately fund a massive neuroendocrine research center. He had plenty of time and the money. Didn't he think he might need to save his own life down the road with any new drugs or therapies that might have come out of the research? I think we could have waited on another version of the iPhone.

I do believe that a healthy diet, combined with allopathic medicine such as chemotherapy can only help one survive cancer. Whether this dietary approach helps by mind over matter or that the neutraceuticals possess anti-cancer properties in vivo remains an enigma.

What I do wonder is whether Mr. Jobs was on any immunosuppressive drugs for his liver transplant? Supression of the immune system has been shown to enhanne tumor progression in animal models.

[citation needed]

MM: If Jobs wasn't on immunosuppressants, he would have died of liver failure quite a while ago. But I don't think it contributed to his death; the kind of cancer you get from transplant surgery is different. There was a girl in Minnesota who died of that not too long ago; she'd had a quite horrific injury (pool drain sucked out a significant portion of her digestive tract) but survived and eventually became a candidate for a major transplant operation. It was going great until she developed transplant-related cancer, which tragically claimed her life at the age of 12. It had been her only shot at a normal life (i.e. one involving normal food), though, so the attempt was worthwhile.

GTW: First off, Jobs was not the only smart person at Apple. In fact, the iPhone was not his exclusive baby. If it was, it would never have been built; it takes more than one person to make a thing like that. So it's a little insulting to the legion of Apple engineers to suggest that the iPhone could only exist because of Jobs' contribution. (Considering that much of the development occurred during his absence, I doubt he had that much direct influence.) Secondly, cancer unfortunately cannot be cured by throwing money at it; the odds of someone making a revolutionary advancement in under a decade, no matter how well funded, are remote. It's not impossible -- just unlikely.

@ herr doktor bimler

LMAO

http://blog.sfgate.com/techchron/2011/10/17/did-jobs-hasten-his-own-dea…
Did Jobs hasten his own death?
Did Steve Jobs hasten his own death by relying too much on holistic medicine?

One Harvard Medical School researcher says he did.

In a post on the question-and-answer site Quora, Ramzi Amri said the form of cancer Jobs has was mild and he should have survived.

âLet me cut to the chase: Mr. Jobs allegedly chose to undergo all sorts of alternative treatment options before opting for conventional medicine,â Amri said in the post, which was reported by Gawker. âThis was, of course, a freedom he had all the rights to take, but given the circumstances it seems sound to assume that Mr. Jobsâ choice for alternative medicine could have led to an unnecessarily early death.â

Amri, who is not a doctor, cites a litany of statistics which he says shows how treatable the pancreatic tumor Jobs is reported to have had is.
http://www.quora.com/Steve-Jobs/Why-did-Steve-Jobs-choose-not-to-effect…

commenter "daisy" on SFGate writes:
daisy0072 2:04 PM on October 17, 2011
Here's another doctor's comments that we in a more responsibly written article:
"Meanwhile Dr David Gorski, from the Barbara Ann Karmanos Cancer Institute, is cautious about judging Mr Jobs' decision to not have immediate treatment.
He said on sciencebasedmedicine.org: 'While Jobs certainly didn't do himself any favours by waiting nine months to undergo definitive surgical therapy of his tumor, it's very easy to overstate the potential harm that he did to himself by not immediately letting surgeons re-sect his tumor shortly after it was diagnosed eight years ago.'

I can't testify to gerson method personally. I can say, once I saw the documentary, I started juicing just to be healthy. Can't say that it isn't. I can tell that since, my hemroid is gone (I've had surgery and it came back) and my allergies have come under control. I thank my hemroid cure to addition of beets to my carrot juice 2-3 times a week. Now, just once a week. I think the allergies are under control because of the increase of vitamin C, but what do I know other than it is under control. Plus, way more energy. Improved skin. Not sluggish in the afternoon. Did I mention my butt doesn't itch? My young son, who suffers my allergies, him 4 ounces of juiced oranges and within an hour of drinking 4 ounces, the sniffles disappeared.

I will point you to someone who does claim Gerson has gotten her cancer under wraps. See - http://www.thewellnesswarrior.com.au/

Please don't spam the blog, Jim.

A keeper from Jess the Wellness Warrior: Coffee Enemas: What Can Go Wrong.

So, looking a bit more at Jess the Wellness Warrior (there's a link to an enema tips article of hers in moderation; the humor I initially found in this has quickly faded away), throwing coffee enemas at epithelioid sarcoma really seems to be a very grim affair.

Jim, thanks for giving me an opportunity I've been waiting a long time for - I want to ask a "juice-head" if he also eats white bread and white rice to be healthy. After all, the goal in all of these processes is to get rid of that nasty fiber, isn't it?

Eagerly awaiting your response...

@TBruce
A juice head. I like it. I drink enough to be considered such.

Regarding white bread. As in wonder bread - No.

White Rice. I'll eat jasmine, basmati and other long and wild grain rice.

I also pursue food higher in potassium. Banana and potato.

I like angus beef, free range poultry and organic fruits & vegs. If for nothing else, it taste better.

@Jim:

I guess I was a bit too subtle. Here's what I'm wondering about:

Why is taking a fruit or vegetable as "juice" any better for your health than taking it as the fruit or vegetable?
What is so special about juicing?

What is so special about juicing?

I'm guessing that you're going to want to look back to the Lebensreform if seeking a real answer to this question. Certainly, as an item of modern popular culture it goes back to the Nature Boys, in particular Gypsy Boots' appearances on the Steve Allen Show.

Learn to be a drinker, a drinker, a drinker
And your muscles won't get loose
Just a-drink-a your papaya juice

(I should add that I don't have a sense of how well known Norman Walker was in his time.)

@TBruce
I see what you are asking. That is a very good question! Multiple reasons...
Just regarding the carrot/granny smith juice I attempt to drink each day...
- I use 2.5 lbs of carrots and a large granny smith apple to make a days worth. That makes something north of 32 ozs of juice. That is a lot of carrots to eat plus a large apple.
- The nutrients like beta carotene I'm looking for is in the juice, not the fiber.
- To get that much beta carotene from the carrots by eating, I'd have to eat more the 2.5 lbs. The body has to work at extracting the nutrients.
- The juice goes right into the blood stream. Akin to penicillin from an IV verses a pill.

Now, add the green juice I like to drink 2-3 times a week. A complete cucumber. 2/3 leaves Kale or Chard. A whole lemon. A whole granny smith. Some ginger. Some fennel. All the nutrients all ready to consumed into the blood stream.

I also like to start the day with 1/2 great fruit and 1 1/2 oranges. You can ask, why not buy it already made. No additives and it is freshly juiced. Since it is freshly juiced, the nutrients are still viable and fresh. Plus, one can't argued with the taste of fresh over 2-3 week old juice!

Of course, there is nothing wrong with eating a carrot or an apple or cucumber. What juicing buys you it processes the nutrients out of the food and right to the blood stream.

No one can take from me how it cured my hemroid (adding beets to my carrot juice) or eased the allergies. Itching and sneezing no more.

@ TBruce:

Well, juicing captures the essential *living* phytonutrients and enzymes and frees them of all that cloggy fibrous material** so that they may be ingested in their purest,rawest, most pristine form: alive and vibrating with healing power. They are like Nature's own Pharma- without the corruption!

Or so I'm told. Actually, some woo-meisters like them so much they shoot them up their butts as well. Especially wheatgrass***- works at either end. Adams sells supplies for both methods ( see NaturalNews Store).

** fibre is sold separately
*** and I thought that wheat was *verboten*

They are like Nature's own Pharma- without the corruption!

I'm willing to go out on a limb and suggest that this is all a cultural back-formation. Lebensreform rejected coffee and alcohol and needed a substitute for socializing. Hence, Kneippkaffee and Sinalco. There are different threads to be found in the offshoots--juicing culture simply doesn't seem to be as obsessed with bowel regularity as some of its cousins.

What I haven't seen mentioned: if Jobs' doctor diagnosed him with a slow growing tumor and also, based on the location of the tumor, prescribed an incredibly invasive and dangerous operation as the course of treatment, can you blame him for taking some time to explore his options, even if some were wacky? It's not like the Wipple was just a snip snip, sew 'em up job. If what I'm reading here is correct, there is a significant chance of death from the operation itself.

i find your blog very creative & informative.
jobs in India

Sorry.. No disrespect intended.. Steve Jobs was a great man.. However Adams is right.. And you CAN NOT say that Jobs was on a SIMILIAR diet to that of the gerson therapy.. Because it mus be exact.. Not SIMILIAR in order for the treatment to work.. Chemo kills.. Cancer is an industry in which people are making billions... "You can't make money off a bag of carrots" - Charlotte Gerson

Giovanni, this is a science blog. You cannot make a declaration like "chemo kills" without being asked for citations. And randomly quoting someone does not count.

I suggest you read some more of this blog prior to commenting again. And when you do comment again, have those cites lined up to support any statements you make.

Chris is right, you'd want to support your arguments in a science blog (as elsewhere).
I read an editorial in the Australian Prescriber some time ago - http://www.australianprescriber.com/magazine/29/1/2/3/ - that the contribution of chemotherapy to the survival of cancer patients is less than 3%.

For ease of reference, here are the sources:

Australian Prescriber Editorial: The emperor's new clothes - can chemotherapy survive?
Aust Prescr 2006;29:2-3 - available at: http://www.australianprescriber.com/magazine/29/1/2/3/

The research referred to:

Morgan G, Ward R, Barton M. The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies. Clin Oncol 2004;16:549-60
Abstract available at - http://www.ncbi.nlm.nih.gov/pubmed/15630849

And you CAN NOT say that Jobs was on a SIMILIAR diet to that of the gerson therapy.. Because it mus be exact..

Do they have specific blends and roasting guidelines for the enema coffee?

A question for Witch: is a cancer a single disease?

"And you CAN NOT say that Jobs was on a SIMILIAR diet to that of the gerson therapy.. Because it mus be exact.."

I like my morning cuppa strongly-brewed, non-organic, taken orally.

What type of "organic" coffee beans should be purchased to make the brew for the Gerson enemas? How about this one:

http://www.chemistry-in-context.com/articles/0006/index.html

A question for Chemomo: What other umbrella terms or specific ailments are chemotherapy indicated it for?

Not a wise-crack, I don't know the answer myself, but I think the 'Witch' made the point about the 3% survival rate which needs addressing, not the 'where is the boundary of cancer' distraction.

I'm interested in the actual core of this thread so please don't de-rail with special tactics. Thanks!

Not a wise-crack, I don't know the answer myself, but I think the 'Witch' made the point about the 3% survival rate which needs addressing, not the 'where is the boundary of cancer' distraction.

This particular study was discussed here. Also note that Witch didn't even bother reading the discussion on that post. Note too that Chemmomo did not say anything about the "boudaries of cancer," but whether cancer was more than one disease.

If you can't be bothered to read the link, here's a quick summary. Cancer is not a single disease, and chemotherapy works better on some cancers than on others. The study left out many of the cancers that chemo works best on, and used old studies that were out-of-date or even misreported some studies. It also looked at a timeframe that is shorter than the benefit of chemo for certain common cancers.

Thank you WKV, I did think the 3% was a bit shocking so I'd guessed it must have been a cherry-picking exercise.

What's the real figure? Is it even possible to arrive at an accurate or meaningful figure?

And please, what can I say to my friend who keeps on telling me that sodium bicarb cures cancer and there's a conspiracy to keep it down???!!!

What's the real figure? Is it even possible to arrive at an accurate or meaningful figure?

Because cancer is so heterogenous, it is not possible to produce any single figure that means anything at all.

And please, what can I say to my friend who keeps on telling me that sodium bicarb cures cancer and there's a conspiracy to keep it down???!!!

Lots of hits in the search box for "sodium bicarbonate cancer." Orac's discussed it repeatedly.

ohnochenny:

And please, what can I say to my friend who keeps on telling me that sodium bicarb cures cancer and there's a conspiracy to keep it down???!!!

That it is wrong. It has also been discussed on this blog several times. There is a search box on the upper left side of this page. Here are the results for the word "bicarb."

Thank you Chris, two new ones just came out on a marketwatch alert and there was a good statistic in it:

Cancer Drug Market Evolves

Today : Monday 27 February 2012

Advances in cancer screening and treatment has caused the death rate from cancer to drop dramatically in recent years. Cancer death rates dropped by 1.8 percent per year in men and 1.6 percent per year in women between 2004 and 2008, according to the American Cancer Society's annual report on cancer statistics.

A very good book to read on cancer is The Emperor of All Maladies.

I have a comment in moderation. It is just a recommendation for the book The Emperor of All Maladies.

Steve Jobs and pancreatic cancer, revisited

oracknows — Thu, 06 Oct 2011 06:20:00 +0000

Steve Jobs and pancreatic cancer, revisited

Another day, another grant. Well, not exactly. We have a visiting professor in town, and I have to give a talk at our department research retreat today. Between going out to dinner, working on the talk, and working on the grant, another day has passed without new Insolence. Bummer. But that pales in comparison to having learned last night while at dinner that Steve Jobs has passed away. Apple fanboy I may be, but I was surprised at how much the news saddened me. It did, however, make it easy to figure out what post(s) I would rerun today. In 2008 and 2009 I did a series of posts about Steve Jobs' health problems. A lot of it was (I hope) educated speculation based on news reports. I had no inside knowledge. Even so, I found it interesting to go back and read them, and I hope you will too. One day someone will do a biography that discusses Jobs medical history and death in more detail, and then I'll know whether my speculations were reasonable or completely off base. I never wrote about his stepping down as CEO of Apple in August, but in reality I knew it couldn't be good. I didn't expect Jobs' decline to be this fast, though.

RIP, Steve. You did amazing things. Here, now, are posts that were originally published in June 2009. There were originally two separate posts separated by three days. I've combined them into one even larger than Orac-an post.

Part One:

It's no secret that, when it comes to computers, my preferred axe has been the Apple Macintosh. Indeed, back in the 1983-1984 school year I was in college living in a house with five other guys, and one of my roommates was a a total Apple geek. He had, as one might expect, an Apple IIe, and I immediately decided that, when it came to computers, I definitely liked the Apple product better than the IBM PC that my other roommate had. Of course, at the time I was nowhere well off enough to be able to afford either, but these two roommates were both computer science majors. They had to have a computer; and both somehow came up with the cash. (Back in those days PCs cost several thousand dollars.) In any case, my first experience with the Macintosh dated back to the original Macintosh, delivered to my Apple-loving roommate through a student discount plan in the early part of 1984. I immediately fell in love with the machine.

I realize that my younger readers will have a hard time believing this, but it's true and it wasn't at all uncommon in the 1980s. I didn't own a computer for about eight years after that, including through medical school and the first two years of graduate school. Instead, I had to rely on computer lab machines and, later, the machine's in my Ph.D. thesis advisor's laboratory, which, fortunately, was a Macintosh. The first computer I ever bought for myself was a Mac LC; I could barely scrape together the cash. Now that I'm incredibly fortunate enough (especially in this economy) to have a good income, I have a MacBook Pro and a Mac Pro at home; my wife has a MacBook; and I have multiple Macs in my lab, all relatively new, even though our IT department is about as Mac hostile as it can be without simply banning Macs and requiring Windows XP boxes. Fortunately, that is changing, thanks to my insistence and that of two other faculty who prefer Macs. Finally, Mac geek that I am, I even bought an iPhone 3 GS on the day it was released. (Yes, I like it. A lot.)

All of which is a revisitation (or, depending on your point of view, a regurgitation) of why I care about Apple and why what happens to Steve Jobs interests me. Last year, when Steve Jobs was looking gaunt and various reports were coming out about his health, full of dire speculation about what was wrong with him, I wrote a post about what I suspected to be going on. Basically, Jobs had had a neuroendocrine tumor of the pancreas, for which he had undergone a pancreaticoduodenectomy (colloquially known as the Whipple procedure) in 2004. As I pointed out at the time, Jobs had been incredibly lucky in that the mass discovered growing in the head of his pancreas turned out not to be a run-of-the-mill pancreatic cancer (adenocarcinoma of the pancreas), which has an absolutely dismal five year survival. (Patrick Swayze has metastatic adenocarcinoma of the pancreas and has thus far beaten the odds by surviving more than a year since his diagnosis.) Rather, it turned out to be a rare type of tumor known as a neuroendocrine tumor, which, in contrast to pancreatic cancer, is eminently curable with surgery. A year ago, I speculated that the reason for Steve Jobs' gaunt appearance was a complication from his Whipple operation, specifically the dumping syndrome. When earlier this year Steve Jobs took a leave of absence from Apple for a few monthsi due to an "endocrine disorder," I was, quite frankly, flummoxed. I couldn't reconcile the reports with my previous speculation.

If a story in the Wall Street Journal is correct, it would appear that I was pretty darned wrong. Indeed, if this story is correct, it would appear that Steve Jobs underwent a liver transplant:

Steve Jobs, who has been on medical leave from Apple Inc. since January to treat an undisclosed medical condition, received a liver transplant in Tennessee about two months ago. The chief executive has been recovering well and is expected to return to work on schedule later this month, though he may work part-time initially.

Mr. Jobs didn't respond to an email requesting comment. "Steve continues to look forward to returning at the end of June, and there's nothing further to say," said Apple spokeswoman Katie Cotton.

When he does return, Mr. Jobs may be encouraged by his physicians to initially "work part-time for a month or two," a person familiar with the thinking at Apple said. That may lead Tim Cook, Apple's chief operating officer, to take "a more encompassing role," this person said. The person added that Mr. Cook may be appointed to Apple's board in the not-too-distant future.

Apple has previously drawn criticism from some shareholders over what they have called limited disclosure of Mr. Jobs's health problems, which began in 2004. In this case, it is unclear whether the surgery is material because Mr. Jobs was already on leave. Material information like that must be disclosed only "if you are asking shareholders to make a decision based on [that] information," said John Olson, a senior partner at Gibson, Dunn & Crutcher in Washington. "You can't expect the company to give a blow-by-blow account of Steve Jobs's health."

Oh, well. I guess I'll have to take my lumps with the rest of them. I totally missed the boat last year, although at the time it certainly seemed like a reasonable guess that Jobs had malabsorption or dumping syndrome, both of which are not-so-infrequent complications of the Whipple procedure. Now, given that I have never actually seen or taken care of Jobs, some trepidation remains about just how much I should speculate based on this WSJ story, but I'll see what I can do. Interestingly, this information about Steve Jobs supposedly needing a liver transplant is not new. Back in January, in an article I totally missed, Bloomberg actually reported that Steve Jobs was looking for a liver transplant. Even back then, it was speculated that Jobs' neuroendocrine tumor, specifically an insulinoma (a tumor that secretes insulin) had metastasized to the liver, and, during an interview with Dr. Steven Brower, professor and chairman of surgery at Mercer University School of Medicine in Savannah, Georgia, it was speculated that Jobs was undergoing a liver transplant in order to treat these liver metastases. Then, in April, Barron's Online and peHUB discussed rumors that a swank house in Memphis had been purchased for Jobs, that he was planning to move to Memphis to treat his cancer, and that he would live in that house while being treated.

With that as a background, this is what the WSJ article reports:

In early January, Mr. Jobs said he had a hormone imbalance that was "relatively simple and straightforward" to treat. But about a week later, he announced that the issue was more complex than he had thought, and in a letter to employees he said he would be taking a leave and Mr. Cook would take over temporarily.

William Hawkins, a doctor specializing in pancreatic and gastrointestinal surgery at Washington University in St. Louis, Mo., said that the type of slow-growing pancreatic tumor Mr. Jobs had will commonly metastasize in another organ during a patient's lifetime, and that the organ is usually the liver. "All total, 75% of patients are going to have the disease spread over the course of their life," said Dr. Hawkins, who has not treated Mr. Jobs.

Getting a liver transplant to treat a metastasized neuroendocrine tumor is controversial because livers are scarce and the surgery's efficacy as a cure hasn't been proved, Dr. Hawkins added. He said that patients whose tumors have metastasized can live for as many as 10 years without any treatment so it is hard to determine how successful a transplant has been in curing the disease.

Before I start discussing the medicine and science behind whether neuroendocrine tumors of the pancreas that have metastasized to the liver can be successfully treated with liver transplant, let me first point out an aspect of this that disturbs me if this story is indeed true. Livers (and indeed, all other organs for transplant) are precious and scarce commodities. Steve Jobs lives in California, specifically the San Francisco bay area. So what was he doing getting a transplant at a Tennessee hospital? According to the WSJ, here's why:

The specifics of Mr. Jobs's surgery couldn't be established, but according to the United Network for Organ Sharing, which manages the transplant network in the U.S., there are no residency requirements for transplants. Having the procedure done in Tennessee makes sense because its list of patients waiting for transplants is shorter than in many other states. According to data provided by UNOS, in 2006, the median number of days from joining the liver waiting list to transplant was 306 nationally. In Tennessee, it was 48 days.

How many people are capable of getting themselves listed for transplant in a state nearly 2,000 miles away from their home? When a liver becomes available, there isn't much time to get to the hospital. That means a person seeking a transplant in another state either has to stay in that state for as long as it takes to get an organ or be within a distance to be able to fly there within a very short period of time. Moreover, organs eligibility and availability are determined by the United Network for Organ Sharing, which maintains the donor lists. When an donor is identified, regional and state organizations (in my home state, for example, Gift of Life, where one of my relatives works), obtain consent, arrange for organ harvest, and decide, based on fairly strict criteria published by UNOS regarding medical need and practical matters like how long it will take to get the organs out and to the hospitals where they are needed, which people on the waiting list for the state will receive each of the organs harvested. If this story is true, what Jobs did is not illegal, but it sure does leave an unpleasant stench of the rich and powerful taking advantage of regional differences in organ availability, perhaps at the expense of a lifelong Tennessee resident who needs a liver.

Worse, the indication is somewhat shaky. For one thing, as was pointed out in the article, neuroendocrine tumors are generally very slow growing and take a long time to metastasize. One of the more "common" subtypes of the rare neuroendocrine tumor in particular, a carcinoid of the appendix or the rectum, is particularly prone to metastasize to the liver and is notorious for causing carcinoid syndrome, which is due to serotonin secretion by these tumors and causes flushing, diarrhea and other unpleasant symptoms.

In any case, the indications for liver transplant for neuroendocrine tumors are a bit controversial, but a good summary can be found at the Mayo Clinic website, the NCI website, and the American Cancer Society website.

In general, for neuroendocrine tumors metastastic to the liver, the first options to be considered are ablative options. These can include surgery, if the tumors are resectable, or ablation by various methods, such as radiofrequency ablation (RFA, or, as we like to say, "cooking the tumors") or cryoablation (cryo, a.k.a. freezing the tumors). Surgery can be curative if the lesions are confined to a volume of liver that can be completely resected, and RFA is generally reserved when there are lesions in multiple lobes not amenable to surgical resection. For the consideration of a liver transplant, a patient must have multiple lesions in multiple lobes of the liver that are too numerous even to be cooked by RFA or frozen by cryo. Moreover, there can be no evidence of tumor anywhere other than in the liver. If there is evidence of tumor spread anywhere other than in the liver, then even liver transplant would not help. Given these indications, if Steve Jobs did undergo a liver transplant, it's safe to assume that he had multiple liver metastases that were not amenable either to resection or ablation.

In addition, another indication is that symptoms must be such that they can't be controlled by medical therapy. For an insulinoma, controlling the symptoms due to hypoglycemia can actually be quite difficult; so the type of tumor Jobs produced symptoms that are more difficult to palliate than the average neuroendocrine tumor. The NCI website lists these recommended methods:

Combination chemotherapy: doxorubicin plus streptozocin or fluorouracil plus streptozocin in patients when doxorubicin is contraindicated.[1,2]
Pharmacologic palliation: diazoxide 300 to 500 mg/day
Somatostatin analogue therapy (SMS 201-995).
atients with hepatic-dominant disease and substantial symptoms caused by tumor bulk or hormone-release syndromes may benefit from procedures that reduce hepatic arterial blood flow to metastases (hepatic arterial occlusion with embolization or with chemoembolization). Such treatment may also be combined with systemic chemotherapy in selected patients.

So what are the results of liver transplant for neuroendocrine tumors? Because these tumors are so uncommon, there's never going to be a randomized clinical trial. All that can be found in the literature is around less than 200 patients who have ever undergone liver transplant for neuroendocrine tumors. A recent series published out of Mount Sinai reviewed the literature and found five year survival rates for liver transplants for neuroendocrine tumors are all over the map, ranging from 33% to 80%. The series itself reported reported 36% five year survival. However, all of these were very small series, some only a handful of patients; so it's hard to generalize any conclusions from them. However, it's the best data available right now. The kindest and most generous characterization that can be made is that that the evidence for treating neuroendocrine tumors metastatic to the liver with liver transplantation is mixed at best. On the other hand, the symptoms from an insulinoma can be quite troubling, including the symptoms of hypoglycemia, plus weakness, confusion, personality changes, headache, and ataxia, and palliation is difficult, even if it does tend to grow very slowly. Moreover, in a patient with lots of liver metastases, liver transplantation is the only modality that holds out even a hope for cure. Still, it's arguable whether it should be done in these cases, given the scarcity of organs and the questionable results.

Some guidance came from a recent review of the management of neuroendocrine tumors concluded:

After considering published studies and data, some recommendations may be given, although these are based on a low level of evidence. After excluding extrahepatic tumour manifestations by imaging procedures and diagnostic laparoscopy, the indication should be chosen restrictively. Few prognostic markers, for example age below 50 years and absence of concurrent extensive surgery, were identified by multivariate analysis in a large retrospective analysis. The prognostic impact of primary tumour localisation is still controversial. However, further indicators of favourable long-term prognosis are needed. Tumour biology characterised by Ki67 and E-cadherin expression may help to identify patients with a favourable outcome so that patient selection can be improved, but this needs further evaluation in larger patient cohorts. Orthotopic liver transplantation for patients with remission of disease or stable disease under medical treatment, and orthotopic liver transplantation for palliative reasons, should be restricted to selected individual cases.

It's very, very hard to tell whether Jobs would fall into one of the groups likely to have a good outcome from just the news reports, given Jobs' secrecy with regard to his health. Certainly, Jobs is over 50 and had prior extensive surgery (a Whipple is about as extensive as it gets!), both of which, according to this review, are poor prognostic markers. If there's one thing that can be said, though, it's that, based on publicly available information, Jobs' medical condition was far worse than he had let on, and his prognosis is far more tenuous than is being advertised. Again, this is all assuming that the WSJ article is accurate. I don't know if Jobs will fall into the group with an 80% chance of five year survival or a 35% chance, but, as a longtime Apple aficionado, I'm worried. I wish nothing but the best for Jobs. After all, he has, more than anyone else, been responsible for the resurgence of Apple's fortunes over the last decade or so. However, I also hope that he has a succession plan in place. I really hope he doesn't need it, but the numbers suggest in the best case a modest chance and in the worst case a major chance that he will in the next five years.

That is, if the WSJ story is accurate. The story is, after all, remarkably free of named sources or anonymous sources, as John Gruber at Daring Fireball points out, although it might also be, as Gruber speculates, a timed leak on a Friday afternoon of the biggest Apple product launch of the year, one that sent its stock soaring.

How very Apple.

Part Two

Over the weekend, the Wall Street Journal reported that the reason for Apple CEO Steve Job's five month medical leave of absence from Apple is that he needed a liver transplant, which, according to the story, he underwent a couple of months ago in Memphis. In my discussion, I assumed, for the most part, the most likely clinical scenario, namely that Steve Jobs' insulinoma had metastasized to his liver and that the liver transplant had been done for that indication, but, as some pointed out, it was possible that Jobs had somehow fried his liver without his tumor having metastasized. Unlikely, true, but possible. Unfortunately, news coming out over the last couple of days, while confirming that Jobs did indeed undergo a liver transplant, only shed a little more light on what happened and still leave a lot of questions. For instance, late Tuesday Methodist University Hospital in Memphis issued a press release:

James D. Eason, M.D., program director at Methodist University Hospital Transplant Institute, chief of transplantation and professor of surgery at the University of Tennessee Health Science Center confirmed today, with the patient's permission, that Steve Jobs received a liver transplant at Methodist University Hospital Transplant Institute in partnership with the University of Tennessee Health Science Center in Memphis.

Mr. Jobs underwent a complete transplant evaluation and was listed for transplantation for an approved indication in accordance with the Transplant Institute policies and United Network for Organ Sharing (UNOS) policies.

He received a liver transplant because he was the patient with the highest MELD score (Model for End-Stage Liver Disease) of his blood type and, therefore, the sickest patient on the waiting list at the time a donor organ became available. Mr. Jobs is now recovering well and has an excellent prognosis.

Unfortunately, this press release leaves as many questions unanswered as it answers.

So, first off, we know that Steve Jobs did undergo a liver transplant. However, the indication is still unclear. The near universal assumption among medical experts who have been interviewed about his case is that the transplant was done for multiple liver metastases that were either too numerous or encompassed too many lobes to be resected. However, this press release implies that Jobs was sick. Real sick. The implication is that he had end stage liver disease, and the hospital points out that he was the sickest patient on the list with his blood type at the time the organ became available. Certainly I did in my post on the subject. So does the expert that the New York Times interviewed:

"If you were to postulate why he did it, I think the most likely reason would be that he had liver metastasis," said Dr. Richard M. Goldberg, an expert on pancreatic cancer at the University of North Carolina, Chapel Hill, who is not involved in Mr. Jobs's treatment.

Though other, noncancerous types of liver disease could also have led to a transplant, experts say cancer is the most likely explanation.

The liver is the most common site for the spread of pancreatic cancer, especially the rare kind that Mr. Jobs had, known as a neuroendocrine tumor, Dr. Goldberg said. That type of tumor tends to be slow-growing and far more treatable than the more common type of pancreatic cancer, which can be fatal within months.

When neuroendocrine tumors do metastasize, Dr. Goldberg said, they often spread only to the liver, rather than all over the body, and a transplant may be recommended.

Often, though, when tumors spread to the liver, surgeons can treat them by removing just part of the liver. The fact that Mr. Jobs needed a transplant suggests that he might have had diffuse disease throughout his liver, something that does not bode well, Dr. Goldberg said.

"The prognosis for somebody with metastatic liver disease is not nearly as good as for somebody who has disease confined to the pancreas," Dr. Goldberg said.

"I think this confirms the speculation that there was more going on than had been previously acknowledged," he said, "but it still doesn't really tell us where things are likely to go from here."

Indeed. According to the New York Times report and an AP report, Jobs was the "sickest" patient on the list at the time. Specifically, he had the highest Model for End-Stage Liver Disease (MELD) score at the time of transplant. The MELD score is a liver failure scoring system implemented in 2002 and used to prioritize patients on the transplant list. Unlike the case for kidney transplants, which can be put off for a long time because a patient can always remain on dialysis even if his kidneys do not function at all, in the case of liver transplants, there are no ways to temporize very long. Consequently, unlike the case for kidney transplants, where first come first served is closer to the model used, for liver transplants severity of the patient's liver failure . Enter the MELD score, which can be calculated using this online calculator. It's a straightforward equation:

MELD Score = 0.957 x Log_e(creatinine mg/dL) + 0.378 x Log_e(bilirubin mg/dL) + 1.120 x Log_e(INR) + 0.6431

Basically, this equation is like a lot of other disease severity scores in that it models mortality rates and fits them to an equation involving key parameters. This equation works out to an expected three month in-hospital survival by MELD score of:

40 or more - 100% mortality
30-39 - 83% mortality
20-29 - 76% mortality
10-19 - 27% mortality
<10 - 4% mortality

Now, I know what you're thinking. There's no spot for liver cancer. That's where things get dicey. One of the criticisms of the original MELD score is that it penalizes patients with hepatocellular cancer, who may be doing fairly well and have, based on biochemical parameters alone, a low MELD score. The reason is that the MELD score was designed primarily to stratify patients with nonmalignant end stage liver disease. To get around this problem, various adjustments to the MELD score have been proposed. However, virtually all of them are based on data for hepatocellular carcinoma (HCC), for which liver transplantation can be curative if there is no disease anywhere but in the liver. The issues involved were actually fairly well discussed in this Medscape article. Here's what it says about MELD scores and HCC:

Patients with hepatocellular carcinoma may initially have preserved synthetic liver function that will not be prioritized well by MELD score calculation, thus underestimating their urgency. Prior to implementation of the MELD score as the allocation method, there have been some attempts to mathematically calculate risk of HCC progression to estimate how this factor would contribute to the new allocation schema.[26] Previously HCC-adjusted MELD scheme stratified patients with T1 HCC (single lesionâ¤1.9 cm) with a MELD score equivalent to a 15% (most recently adjusted to 8%) 3-month mortality, and T2 HCC (one nodule 2-5 cm, or two to three nodules all â¤3 cm) with a score equivalent to a 30% (now adjusted to 15%) 3-month mortality. Additional points equivalent to a 10% increase in pretransplant mortality are also given every 3 months until the patient is transplanted or no longer suitable for transplant. T3 HCC (one nodule >5 cm or two to three nodules at least one >3 cm) and T4 HCC (four or more nodules of any size or gross vascular invasion) are not eligible for listing.[3] There is criticism that this schema was made without much prior data on the pattern and rate of dropouts, and that liver cancer patients may have been unfairly given an advantage. Efforts to verify the fairness of the scheme suggest that further refinement is still needed.[27,28]

The problem with applying this to Jobs' case is that there is very little evidence to guide a valid method of estimating a MELD score for someone with metastases to the liver from a neuroendocrine tumor. It's essentially flying blind; actually, it's almost a pure guess. There is, of course, one case in which applying MELD to a patient like Steve Jobs, and that would be if his liver metastases were so widespread that they were causing liver failure severe enough to give him a moderate to high MELD score even without the correction for malignancy, which in the case of an insulinoma is nothing more than a guesstimate. Given that neuroendocrine tumors are usually fairly indolent and slow growing, it's hard to see how one can even estimate three month mortality rates. In any case, if it is true that Jobs had a high MELD score without consideration of malignancy, then before his transplant Jobs was much, much sicker than anyone had let on. He could very well have been near death's door. If this wasn't the case, then I have a hard time understanding how Jobs' doctors came up with a high MELD score for his neuroendocrine tumor. My guess is that Jobs really was in serious end stage liver disease, and, given the limited information, that's all it is--a guess. If that is the case, and his end stage liver disease was due to his liver being chock full of insulinoma, then I'd be very worried that it won't be long before it recurs in the new liver.

In the AP article, a surgeon whom I used to know (and wouldn't he be surprised if he ever found out that he actually knew an obnoxious pseudonymous blogger?) speculates:

Patients in such bad shape would get priority on any organ transplant list, and if Jobs did have a recurrence of cancer, that would give him even higher preference, said Dr. Roderich Schwarz a pancreatic cancer specialist at the University of Texas-Southwestern Medical Center in Dallas.

Liver transplants in such cases can cure the cancer, although patients remain at risk for another recurrence, Schwarz said. In addition, the powerful immune-suppressing medicine they must take to keep the body from rejecting the transplanted liver also can increase their risks for recurrence.

Either way, it's a bad situation. The best I can reconstruct it is that Jobs probably had bad end stage liver disease with liver metastases. His short-term prognosis after his liver transplant is most likely quite good. However, without knowing how extensive his liver metastases were, it's almost impossible to speculate about his long term prognosis, especially in the absence of so little data for the efficacy of liver transplant in producing long term survival when used to treat liver metastases of a neuroendocrine tumor.

As for the ethical issues regarding this transplant that I expressed a bit of discomfort with, that blogging private surgeon from my old stomping grounds from residency, Buckeye Surgeon, takes issue with such complaints. He's actually mostly right. Jobs did nothing illegal, even if he was listed for transplant in multiple states. Where Buckeye Surgeon goes a bit wrong is in asserting that it's not possible to game the system. True, in most cases it's not. The criteria are based on biochemical measures of liver failure; i.e., hard numbers. However, in the case of malignancy, physician judgment comes in as to how urgent the transplant is. For HCC, there are reasonable, albeit incomplete, guidelines. However, in the case of a neuroendocrine tumor, where there is so little data on whether or not transplantation can result in long term survival, whatever the surgeons decide upon for a MELD score is likely to be a guess more than anything else, especially if the transplant patient hasn't yet developed severe biochemical derangements from his liver failure yet. I'm not saying that's what happened in Jobs' case. Indeed, i rather suspect that the real explanation for his undergoing transplant is that he was much, much sicker than advertised, with a much, much worse liver than anyone had let on. Be that as it may, none of this doesn't change the fact that liver transplant for neuroendocrine tumors has relatively weak data to support it, all in the form of small case series. Indeed, the case series that Buckeye Surgeon cited even concluded:

OLT [orthotopic liver transplantation] can achieve control of hormonal symptoms and prolong survival in selected patients with liver metastasis of carcinoid tumors. It does not seem indicated for other NET [neuroendocrine tumors].

However, I also note that this study is 12 years old, and transplantation techniques have improved in the interim. In any case, though, any estimate for a MELD score for Jobs would have had huge error bars if it were primarily based on his neuroendocrine tumor metastases rather than cold, hard lab values indicating a dying liver.

There's one thing that I would hope to see from Jobs' case, and that's a discussion of the importance of transplantation and organ donation. UNOS and various state and regional organ sharing organizations do try to work to minimize disparities in waiting time for organs based on geography, but there is only so much they can do. Part of the reason for the questions and criticisms of how Jobs managed to use his wealth and power to improve his odds as much as is legally possible is that there are such regional disparities in wait times. If there were not, neither Jobs nor anyone else would feel as compelled to do something like move to Memphis temporarily in order to take advantage of Tennessee's shorter wait lists for liver transplant. The best way to overcome these disparities is to increase the number of organ donors. Far too many people still die waiting for organ transplants, and far too few people donate their organs. If the Steve Jobs case encourages more people to sign their donor cards, and, far more importantly given that the organ donor card does nothing except inform people of a person's intent and that permission for organ harvest still has to be given by the family, to tell their family that they want to donate their organs, it will be a good thing indeed.

ADDENDUM: It appears that Jobs probably died of recurrence of his cancer.

oracknows Thu, 10/06/2011 - 02:20

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It's probably a side effect of hanging around RI, but one of the first things I thought of when I heard of Jobs' death was how quickly a certain Celebrity Cancer Vulture would be descending to feast on the corpse. After Patrick Swayze, I figured it was a no-brainer. And indeed, today, it is.

NaturalNews has an article up proclaiming that Jobs' cancer treatment killed him.

"...his remaining life was stolen from him by the cancer industry and its poisons."

There's also a screed about Apple's evil corporate influence, plus at the end of the article Mike Adams solemnly promises that unlike others, he won't exploit Jobs' name for selfish ends.

Oops, sorry I didn't warn you to shield your irony meters. But regulars here should already have taken such precautions many times over.

@Dangerous Bacon

I had the same thought, and fully expected something from Orac on the subject.

I found this little doozy this morning:

http://eclinik.wordpress.com/2011/10/06/steve-jobs-died-of-cancer-at-56/

I expect the quacks will be out in force sooner or later.

I am told there is now the option to have a *partial* liver transplant. As a complete medical outsider I assume it comes with considerable risk, otherwise the liver donor shortage would mostly be a thing of the past...

Do you know anything about the state of stem cell research? Is this a strictly "science fiction" solution of organ shortage or is there some conceptual progress?

Sally Satel had the idea of making more kidneys available by making monetary compensation of donors legal. Any progress in the pipeline?

From one of the comments on hadr0n's link:
"You see so many people who should have known and are wealthy enough to pursue an alternative treatment."
And I thought it was Big Pharma who made big bucks out of cancer....

Vincent DeVita would be rolling in his grave, if he were in fact dead.

Birger--

A partial liver transplant is somewhat risky for the donor, as well as requiring recovery time because it's major surgery. Mayo Clinic, which requires donors to be in excellent health, estimates an 0.3 to 0.5 percent chance of death for the donor.

Many of us have a person or three who would take that risk for us: but what percentage have even one who is in excellent health and a good enough match for a donation?

Also (at least in the U.S.) there are financial issues for the donor: it's possible that neither the donor's nor the recipient's health insurance will pay for the surgery. They're very unlikely to pay the travel expenses, and the donor may lose significant income during the surgery and recovery. A few years ago some friends of mine were raising money to "get a liver for Deb": her brother was a matched donor, and had offered to do it, but they needed a large chunk of money to pay for it, which led to things like an online fundraising auction.

I saw a tweet that Simon & Schuster are "Mov[ing] Up Isaacson's Steve Jobs Bio to October 24," for what it's worth. No idea how much it might have to say about his health.

Ralph M. Steinman, one of the winners of the 2011 Nobel prize for Nobel Prize for Physiology and Medicine died of pancreatic cancer 3 days before the prize was announced. The Nobel committee was unaware of his death so he became a rare posthumous Nobel Laureate. Steinman survived for over 4 years after being diagnosed.

I'm not an Apple fan but believe that Jobs was an important person in our culture- so we all experience his loss.

@ Dangerous Bacon: Sometimes I suspect idiot woo-meisters are having a great day because they can yap," See! See! Jobs died anyway!" I'll probably tune in the other idiot to hear his nonsense if I'm not too nauseated.

About chemotherapy and pancreatic cancer: I know 2 people who died fo pancreatic cancer without any chemo- I know neither was for woo-entranced reasons either. One was my brilliant cousin- who lasted 3 weeks from first symptom ( jaundice) until his death. The other was a tennis player who lived nearly a year, playing about half of it: she said she would take chemo - for some reasons the doctors delayed- I don't know the full story of her demise.

Woo-meisters - who preach the "Toxins cause cancer" doctrine like to frighten people off of therapies that may be difficult but give them *additional* time like that which Mr Jobs received- this option wasn't open for my cousin. He would have taken it.

@Birger Johansson

I'm not a doctor, but my understanding of partial liver transplants is that the transplanted portion has to be at least 30-35% of the full liver size for it to work. That means that you can really only divide a liver into 2 parts for transplantation. There's also the fact that it takes time for the transplanted liver portion to grow to full size, so hepatic function is still limited during the growing phase. Add to that the normal risks associated with surgery that the living donor incurs, and it really isn't going to utterly revolutionize the transplant surgery field. It's certainly useful, but only to a limited extent.

Here's an analysis that focuses on Job's use of alternative therapies for 9 months before having Whipple surgery:

http://www.thedailybeast.com/articles/2011/10/05/steve-jobs-dies-his-un…

RIP Steve Jobs Thanks for the iDevices
and for Modern Medicine thanks for the iAtrogenesis. Boooh

Thingy. shut your fucking mouth, you ghoul.

I find the news sad too but don't know why. Not an apple fan at all (least computer-wise). Maybe just admiration for someone who accomplished so much and would love to see what else he might have done in his life. Or maybe recognition that Steve went where we'll all go someday--i.e. we're all mortal. Whatever the reason, we (my better half and I) are sad. RIP.

Until now there's no cure for cancer and aIDS. But wait how about this one?

I wonder if Job's cancer spread because he was into woo. I don't see any documentation that he did anything other than surgery, which he consented to after 9 months of trying to treat his condition with alternative methods. What would have been his survival rate had he had chemo before or after the modified whipple procedure?

If he did refuse chemo/and/or radiation, he would fit the profile of the altie loving women I know with breast cancer...they embrace surgery, but see chemo, radiation and hormone therapy as very harmful threatments and poison to their bodies.

To reiterate what many have said on the web: Jobs gave us Star Trek. (Look at your iPhone/smartphone. Doesn't it look like a tricorder?)

Pancreatic cancer is a terrible disease, and I hope that he did not suffer.

ed:

Until now there's no cure for cancer and aIDS. But wait how about this one?

That is the most stupid thing I have seen since first reading about what Hulda Clark claimed caused all cancers (a liver fluke that lives in Indonesia). That patent application is from 1990, where it that device being used and what is the scientific literature if its efficacy?

I knew when he stepped down that it couldn't be a good sign, but I was still shocked when I saw the news last night (on my iPad). I knew I was a FanGirl, but I am still surprised at how genuinely sad I am.

When I heard about his death last night I immediately though about another recent cancer death, Jack Layton. It felt like a similar situation. He was the Federal NDP leader and was diagnosed with prostate cancer in 2010. In July this year he took a temporary leave of absence but expected to be back for the fall session but died on August 22. For some reason, while I knew it was not good news when both of them stepped down from their positions, I just did not expect them to die and the news came as a shock.

Not really any room for Mad Mike Adams to complain, as Jobs regretfully chose woo-therapy for the first 9 months after his diagnosis. He was reputedly a vegan and a Buddhist as well, if that means anything. personally, I don't care. eat and drink what you like, and I suppose if one must espouse some kind of magical thinking, Buddhism is as good as the others. But the foray into magical cures may have just shortened his life. Too bad, really. Jobs influence on the technology industry goes far beyond his creation of the apple line of products. He will be missed by many, and no doubt remembered by all.

@DLC:

Not really any room for Mad Mike Adams to complain, as Jobs regretfully chose woo-therapy for the first 9 months after his diagnosis.

Au contraire, Mike Adams will claim that if Jobs had kept with the alt-med therapies he'd still be alive.

I wonder if the transplant rates vary in states by income? In richer states are there longer waiting lists than in the poorer states where people will die as they can't afford the surgery? I'm from Australia, so I really have no idea, I just was wondering why the waiting length would vary so much from state to state.

@ Emma: Many of the prospective recipients of organs are on Medicaid because of their debilitating chronic organ failures. Each State does not offer the same type of coverage for organ recipients covered under Medicaid. Each State is required to offer "mandatory medical services" and other services are considered "optional services" and Federal Medicaid Statutes consider organ transplants as "optional services".

I know for a fact that New York State and Oregon among the States offer very generous "optional services", yet other states have very few of the "optional services" as part of their Medicaid plan...this may account for the wide range of "wait time" for organs between states.

During the last Presidential election, when Barack Obama and the Democratic party proposed sweeping health insurance coverage reforms to offer insurance to many of the 45 million Americans without health coverage, part of the new services was a proposal to reimburse doctors for "end of life counseling" to their patients. Alaskan governor Sarah Palin the Republican Vice-Presidential candidate labeled this proposal as "the institution of death panels"...which received wide media attention because of her efforts to plow under Obama's health care reform and to scare elderly and chronically ill Americans.

Meanwhile, another Republican Governor...Jan Brewer of Arizona...actually proposed and pushed through legislation to eliminate the "optional coverage" provision of that state's Medicaid program that covered organ transplants. Several people died as a result of this callous Arizona legislation. Partial funding has been restored, but the full restoration of organ transplant funding will not be restored on 2013.

Several countries have quite successfully implemented an "opt out" organ donation program rather than the traditional "opt in" program...where prospective donors actually have to sign a donor donation card. It has resulted in much discussion but has resulted in more organs becoming available to be harvested at the time of death.

In Western Australia an "opt out" program was implemented this year and Queensland is giving careful consideration to this "opt out" program to make more organs available.

I too was sad to read about Steve Jobs, especially as a friend is currently battling kidney cancer with pancreatic metastases.

The part above about assessing patients for a liver transplant interested me. I worked in clinical biochemistry in the UK in the early 80s when Prof Sir Roy Calne was working on liver transplants and the use of cylcosporine. I did quite a bit of blood work on dogs and pigs and then on humans. Blood would be sent up at each stage of the surgery and two of us would be on duty (they were always done at night and took about 8 hours) working as fast as we could to get a bank of blood chemistry results back to theatre ASAP. It was an exciting time.

In the early days the only patients considered suitable for liver transplant were very sick, and in liver failure that means they bled spectacularly (as I witnessed when I went to watch one of these early transplants) and at first survival was very poor. The children with congenital liver disease were particularly heart-breaking, as their only hope was this high risk procedure. It still amazes me to think these transplants are now practically routine. Liver failure is something that no alternative therapy can make any claims to cure.

I do love the Apple IIe. Kind of ironic that I have to get an Android phone to run an Apple II emulator, unless I wanna jailbreak.

The only people shocked by Jobs "sudden" demise should know only how well crApple are ethically challenged,shady, deviously scheming,secretive if its for their own advantage EVEN with the TERMINAL END STAGE state of their creator.

Either you listened to brainwashed crApple fanbois victims of crApple propaganda (who many still believe Jobs was "cured" from his cancer :D) who were in TOTAL denial(live their lives fact free as show by their consumption of iCrapple) about the ANYTHING BUT FAKE TMZ ( + related) PHOTOS in Jobs very own garden FFS released a few weeks ago OR they have just passed you buy(along with his couple week premature(?) death announcement sourced from a twitter to web wide?), from the events/the environment in the photos (morphine drip, patients mobility ending wheelchair/nurse support,grim/anxious face on family member) to the knowledgeable comments (ie NOT the rabid fanbois) of people who have experienced close ones/patients go through the same PALLIATIVE stage where all HOPE of TREATMENT is gone instead the focus in on reduction of suffering associated with death from such an AGGRESSIVE cancer (thanks to his greedy + illogical decision to extend his life via ($$$ GAMED) Liver transplant - thank god Jobs $$$ can't protect him from the natural laws AKA karma)

GRUESOME photos showing BLATANT TRUTH of Jobs imminent demise:

http://forums.macrumors.com/attachment.php?attachmentid=300988&stc=1&th…

http://www.tmz.com/2011/08/26/steve-jobs-apple-photo-resignation-ceo-si…

Stay Hungry. Stay Foolish.

grrlscientist — Mon, 12 Apr 2010 04:59:56 +0000

Stay Hungry. Stay Foolish.

tags: PiXar, NeXt, Apple computers, technology, follow your passion, education, advice, Stanford University, Steve Jobs, streaming video

Steve Jobs demonstrates tremendous tunnel vision as he talks about his life in his 2005 commencement speech at Stanford University. Unfortunately for the rest of the world, this white man with a loving family makes a huge and very basic error in logic: because he somehow managed to "make it" doesn't mean that everyone does -- or will. Most of us fail, and fail miserably, and fail publicly, and we fail repeatedly until the day we die as we strive to do what we love.

grrlscientist Mon, 04/12/2010 - 00:59

Tags

Most of us fail, and fail miserably, and fail publicly, and we fail repeatedly until the day we die as we strive to do what we love.

Yeah, that's true, but I'd suspect Steve Jobs is aware of it, as well - it's probably just that he was giving a commencement speech. A commencement speech is a little bit like a funeral eulogy - you're generally expected to restrict yourself to the palatable part of the truth.

Samuel Beckett had a more realistic take on the issue:

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better.

I'm inclined to give him a sort of a pass since the genre of commencement address is such an empty one, but yes, you are completely right.

Sharon

What would you have him do at a commencement- tell the kids something that would de-motivate them? While it's unarguably true that most of them will "fail" no matter how hard they work, that is no reason to not strive to achieve their goals. Though "success", as in doing everything you wanted to do without fail is very very rare if not non-existant, without attempting to "succeed", you are absolutely bound to fail. And falling short of one's goals doesn't have to suck either.

Samuel Beckett's quote is quite appropriate on this issue.

What would you have him do at a commencement- tell the kids something that would de-motivate them? While it's unarguably true that most of them will "fail" no matter how hard they work, that is no reason to not strive to achieve their goals. Though "success", as in doing everything you wanted to do without fail is very very rare if not non-existent, without attempting to "succeed", you are absolutely bound to fail. And falling short of one's goals doesn't have to suck either.

Samuel Beckett's quote is quite appropriate on this issue.

I still think that a better message is to teach students that success is finding a "fit" that works for you. I've words to that effect in a blog post as advice to students starting university (linked on my name).

The try and try again message is good, but only if it's coupled to other things to round it out.

(I haven't watched the video; haven't time. I confess to being a winner of one of Appleâs âCrazy Onesâ T-shirt. Similar sentiment I suspect as to his speech.)

It's Stanford - you have to pretend no one can fail. Hell, just look at Harvard (well, that MBA mill, the 'business school') and Yale and the Bushes. See, it's not *what* you know, it's *who* you know. To be fair to Jobs, he did have some ideas that weren't bad and yet he lost a fortune on them - but like any good businessman he didn't let that stop him from trying again, and he's found himself in a profitable business.

unfortunately, we are not all businessmen, we all do not and will never "know" someone who can give us a leg up and even when we do find our heart's desire, we often are barred from pursuing it. in short, in this "winner takes all" society, we can't ALL be "winners," regardless of how hard we strive to achieve this. i think a more realistic speech would have been more appropriate.