Respectful Insolence

“Just one more thing”

I’ve written quite a bit about Steve Jobs’ battle with pancreatic cancer over the years and, more recently, in the wake of his death nearly four weeks ago. The reason, of course, is that the course of his cancer was of intense interest after it became public knowledge that he had cancer. In particular, what I most considered to be worth discussing was whether the nine month delay between Jobs’ diagnosis and his undergoing surgery for his pancreatic insulinoma might have been what did him in. I’ve made my position very clear on the issue, namely that, although Jobs certainly did himself no favors in delaying his surgery, it’s impossible to know whether and by how much he might have decreased his chances of surviving his cancer through his flirtation with woo.

The other issue that’s irritated me is that the quackery apologists and quacks have been coming out of the woodwork, each claiming that if only Steve Jobs had subjected himself to this woo or taken this supplement, he’d still be alive today. Nicholas Gonzalez was first out of the gate with that particularly nasty, unfalsifiable form of fake sadness, but he wasn’t the only one. Recently Bill Sardi claimed that there are all sorts of “natural therapies” that could have helped Jobs, while Dr. Robert Wascher, MD, a surgical oncologist from California (who really should know better but apparently does not) claims that tumeric spice could have prevented or cured Steve Jobs’ cancer, although in all fairness he also pointed out that radical surgery is currently the only cure. Unfortunately, he also used the failure of chemotherapy to cure this kind of cancer as an excuse to call for being more “open-minded” to alternative therapies.

Amazon.com finally delivered my copy of Walter Isaacson’s biography of Steve Jobs. I haven’t had a chance to read the whole thing yet, but, because of the intense interest in Jobs’ medical history, not to mention a desire on my part to see (1) if there were any new information there that would allow me to assess how accurate my previous commentary was and (2) information that would allow me to fill in the gaps in the story from the intense media coverage. So I couldn’t help myself. I skipped ahead to the chapters on his illness, of which there are three, entitled Round One, Round Two, and Round Three. Round One covers the initial diagnosis. Round Two deals with the recurrence of Jobs’ cancer and his liver transplant. Finally, Round Three deals with the final recurrence of Jobs’ cancer and his decline.

Before I start, a warning: I’m going to discuss these issues in a fair amount of detail. If you want potential spoilers, don’t read any further. On the other hand, one spoiler I will mention is that there was surprisingly little here (at least to me) that wasn’t reported before; the only difference is that there is more detail. However, the details are informative. If there’s one thing I wanted the most information about from this biography, it was more details about Jobs’ initial presentation. After all, I had put my name on the line by arguing that his delay in surgical therapy probably didn’t make that much of a difference, and I was very curious to find out whether there was more information that would allow me to assess whether I should change my initial assessment. I was also interested in whether there was more information about what specific kinds of pseudoscience Jobs had pursued.

I was disappointed on both counts, but that’s not to say that the first chapter on Jobs’ illness, Round One, didn’t give me more information.

The first thing I learned was the reason Jobs was getting CT scans. Remember, the diagnosis of his cancer was actually serendipitous. It was, as we like to call it, an incidentaloma in that it was an incidental finding on a scan done for a different purpose. In this case, the purpose of the CT scan was to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. In October 2003, Jobs just happened to run into his urologist, who pointed out that he hadn’t had a CT scan of his urinary system in five years and suggested that he get one. He did, and there was a suspicious lesion on his pancreas. His doctors urged Jobs to get a special CT scan known as a pancreatic scan, which basically provides a lot more detail in the region of the pancreas. He didn’t; it took a lot of urging before he did it, and when he did at first his doctors thought he had standard pancreatic adenocarcinoma, the deadly kind that few survive. As has been reported before, though, Jobs underwent a transduodenal biopsy, and the diagnosis of neuroendocrine tumor was made.

Unfortunately, no further information is provided that we didn’t already know about regarding what Jobs did during the nine months he tried “alternative” therapies. He kept to a strict vegan diet that included large quantities of fresh carrot and fruit juices. (Shades of the Orange Man!) In addition:

To that regimen, he added acupuncture, a variety of herbal remedies, and occasionally a few other treatments he found on the internet or by consulting people around the country, including a psychic. For a while, he was under the sway of a doctor who operated a natural healing clinic in southern California that stressed the use of organic herbs, juice fasts, frequent bowel cleanings, hydrotherapy, and the expression of all negative feelings.

Unfortunately, the natural healing clinic wasn’t identified. I did a bit of searching, but I couldn’t narrow down the possibilities enough to hazard even an educated guess about which clinic Jobs might hvae visited. There’s a lot of woo in southern California. A whole lot of woo, with many of the clinics there affiliated with Tijuana cancer quackery clinics. Even so, as much as many of us here would like to condemn Dean Ornish, who was Jobs’ friend, apparently Ornish did try to do right by him:

Even the diet doctor Dean Ornish, a pioneer in alternative and nutritional methods of treating diseases, took a long walk with Jobs and insisted that sometimes traditional methods were the right option. “You really need surgery,” Ornish told him.

Ornish appears for once to have been right. Sure, it’s possible he might have been exaggerating how strongly he urged Jobs to have surgery or told the story in such a manner as to make him appear to be the responsible advocate of science-based medicine who tried to keep Jobs from making a huge mistake, but it’s also possible that this account is accurate. We have no way of knowing.

There’s still more in this chapter. For example, the book states that on a followup CT scan showed that the tumor “had grown and possibly spread.” In addition, the operation that Jobs underwent was described as not being a “full Whipple procedure” but rather a “less radical approach, a modified Whipple that removed only part of the pancreas.” I can only speculate what Isaacson meant by that. A Whipple, standard or not, by definition removes part of the pancreas, specifically the head. Because of the anatomic constraints of the pancreas, that can’t really be done without removing a significant portion of the duodenum and the common bile duct. By definition, a Whipple operation includes removing the duodenum and part of the intestine; if that’s not removed, it’s not a Whipple. I suspect that what Isaacson probably meant was a pylorus-sparing Whipple, as I discussed before. In this operation, part of the duodenum is still removed, but not part of the stomach, as in a standard Whipple. The advantage is that a pylorus-sparing Whipple can often alleviate many of the digestive complications of a Whipple operation because the pylorus is preserved.

Finally, it is revealed:

During the operation the doctors found three liver metastases. Had they operated nine months earlier, they might have caught it before it spread, although they would never know for sure.

Or, on the other hand, chances are very good that those liver metastases were there nine months before. Insulinomas tend not to grow so fast that they can progress from micrometastases to metastases visible to the surgeons in that short a period of time. So, while on the surface this revelation would seem to the average lay person to indicate that Jobs’ delay very well might have killed him, in reality, thanks to lead time bias, it probably means that his fate was sealed by the time he was diagnosed. Certainly, it means that claims such as the one made by Dr. Robert Wascher is not based in science and in fact is irresponsible:

In a recent interview with Newsmax Health Wascher explained how the simple act of consuming turmeric, a natural spice popular in Asian and Indian food, may be enough to prevent and cure the type of pancreatic cancer that afflicted former Apple CEO Steve Jobs, as well as other forms.

The same goes for Nicholas Gonzalez’s claims that he could have saved Jobs.

What’s primarily interesting in the new information in this chapter are the details about Jobs’ being listed for liver transplant and how he ended up getting a liver in Tennessee. There has been a lot of speculation that somehow Jobs used his great wealth to “jump the queue” and get a liver more rapidly than he was entitled. As I’ve argued before, he did not, as you will soon see.

One thing I learned that I was right about is that a significant reason for Job’s emaciation in the wake of his surgery was what I had speculated: Complications from his Whipple procedure combined with his obsessive vegan diet. That is, that was the cause before his cancer recurrence. Isaacson described how, even after he had married and had children, he continued to have dubious eating habits. For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d go on fasts. His wife tried to get him to diversify his protein sources and eat more fish, but largely failed. His wife hired a cook who tried to cater to Jobs’ strange eating habits. Indeed, Jobs lost 40 lbs. just during the spring of 2008. Another thing I learned was just how sick Jobs was at this point. His liver metastases had led to excessive secretion of glucagon; he was in a lot of pain and taking narcotics, his liver apparently full of metastases.

It turns out that Jobs was listed for liver transplant in both California and Tennessee, as approximately 3% of transplant recipients manage to list themselves in two different states. Isaacson describes:

There is no legal way for a patient, even one as wealthy as Jobs, to jump the queue, and he didn’t. Recipients are chosen based on their MELD score (Model for End-stage Liver Disease), which uses lab tests of hormone levels to determine how urgently a transplant is needed and on the length of time they have been waiting. Every donation is closely audieted, data are available on public websites (optn.transplant.hrsa.gov), and you can monitor your status on the wait list at any time.

Regarding the multiple listing in California and Tennessee:

Such multiple listing is not discouraged by policy, even though critics say it favors the rich, but it is difficult. There were two major requirements: The potential recipient had to be able to get to the chosen hospital within eight hours, which Jobs could do thanks to his plane, and the doctors from that hospital had to evaluate the patient in person before adding him to the list.

Isaacson also reveals that it was a fairly close call. Jobs’ condition was deteriorating rapidly. If he hadn’t been listed in Tennessee, he very likely would have died before a liver became available to him in California. As it was, it wasn’t clear that he wouldn’t die before a liver became available to him in Tennessee. It might seem a bit ghoulish, but it’s the sort of thinking that everyone who’s ever undergone a liver transplant has a hard time avoiding. Isaacson reports that by March 2009 Jobs’ condition was poor and getting worse, but that there was hope among his friends that, because St. Patrick’s Day was coming up and because Memphis was a regional site for March Madness, there was a high likelihood of a spike in automobile crashes due to all the revelry and drinking associated with those events. We even learn that the donor was a young man in his mid-twenties who was killed in a car crash on March 21. It also turns out that Jobs had complications after his surgery. From what I can gather from Isaacson’s account (it wasn’t entirely clear to me) Jobs refused a nasogastric tube when he needed it and as a result aspirated gastric contents when he was sedated, developing a severe postoperative aspiration pneumonia from which at that point “they thought he might die.” Worse, although the transplant was a success, his old liver was riddled with metastases throughout, and surgeons noted “spots on his peritoneum.” Whether these “spots” were metastatic tumor deposits, Isaacson does not say, but it’s a good bet that they probably were.

Assuming Isaacson’s report is accurate and if those “spots” on the peritoneum were indeed metastatic insulinoma, this new information leads me to question more strongly than I did in the past (actually, I didn’t question the decision much at all) whether a liver transplant was a reasonable course of action in Jobs’ case, given that Jobs’ tumor burden in his liver seems to have been much higher than previously reported. If the spots were not cancer, then the transplant, although not contraindicated, was still high risk. In retrospect, it is not surprising that Jobs’ tumor recurred fairly quickly, less than two years after his transplant. Even Isaacson notes that by characterizing Jobs’ transplant as “a success, but not reassuring.” That’s because extrahepatic disease (disease outside of the liver, which peritoneal implants qualify as) is usually a contraindication for liver transplant for cancer, at least in the case of hepatocellular cancer, because the chance of recurrence is so high. I make the analogy to adenocarcinoma of the pancreas, the much more lethal pancreatic cancer that is far more common than the insulinoma that Steve Jobs had. Often, surgeons will perform laparoscopy before attempting a curative resection (the aforementioned Whipple operation). If nodules are noted on the peritoneum, they are biopsied, and if the frozen section comes back as adenocarcinoma, the attempt at curative resection is aborted. The same is true when undertaking a curative resection for liver metastases from colorectal cancer, which can result in long term survival 30-40% of the time, but not if there’s even a hint of a whiff of extrahepatic disease. Although evidence is sketchy for insulinomas, because they’re such rare tumors, it’s hard not to conclude that the same is likely true for them and that extrahepatic disease is a contraindication to liver transplant.

This chapter was, as you might imagine, a depressing read. In actuality, there wasn’t much new there or even much in the way of medical details that add much to what we know about Jobs’ course, aside from one revelation that I’ll discuss. First, to begin, in late 2010 Jobs started to feel sick again. Isaacson describes it thusly:

The cancer always sent signals as it reappeared. Jobs had learned that. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear. But he knew better. The cancer and its signaling pathways, and a few months after he felt the signs the doctors would discover that it was indeed no longer in remission.

Another such downturn began in early November 2010. He was in pain, stopped eating, and had to be fed intravenously by a nurse who came to the house. The doctors found no sign of no more tumors, and they assumed that this was just another of his perioic cycles of fighting infections and digestive maladies.

In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases and was in a lot of pain before the end.

The other issue discussed in this final chapter that is of interest to SBM readers is that Jobs was one of the first twenty people in the world to have all the genes of his cancer and his normal DNA sequenced. At the time, it cost $100,000 to do. This sequencing was done by a collaboration consisting of teams at Standford, Johns Hopkins, and the Broad Institute at MIT. Scientists and oncologists looked at this information and used it to choose various targeted therapies for Jobs throughout the remainder of his life. Whether these targeted therapies actually prolonged Jobs’ life longer than standard chemotherapy would have is unknown, particularly given that Jobs underwent standard chemotherapy as well. It is rather interesting to read the account, however, of how 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. Isaacson reports:

By the end of the meeting, Jobs and his team had gone through all of the molecular data, assessed the rationales for each of the potential therapies, and come up with a list of tests to help them better prioritize these.

The results of this meeting were sequential regimens of targeted drug therapies designed to “stay one step ahead of the cancer.” Unfortunately, as is all too often the case, the cancer ultimately caught up and passed anything that even the most cutting edge oncologic medicine could do. It’s always been the problem with targeted therapy; cancers evolve resistance, as Jobs’ cancer ultimately did.

So what can we learn from Jobs’ losing battle with cancer? Even now, nearly four weeks later, there remains considerable discussion of Jobs’ cancer and, in particular, his choices regarding delaying surgery. Just yesterday, a pediatrician named Michele Berman speculating How alternative medicine may have killed Jobs. The article basically consists of many of the same oncologically unsophisticated arguments that I complained about right after Jobs’ death, some of which are included in another blog post on her blog. Clearly, an education in lead time bias is required. Does any of this mean that it was a good idea (or even just not a bad idea) for Jobs to have delayed having surgery for nine months? Of course not. Again, surgery was his only hope for long term survival. However, as I’ve pointed out before, chances are that surgery right after his diagnosis probably wouldn’t have saved Jobs.

Although it’s no doubt counterintuitive to most readers (and obviously to Dr. Berman as well), finding liver metastases at the time of Jobs’ first operation strongly suggests this conclusion because it indicates that those metastases were almost certainly present nine months before. Had he been operated on then, would most likely would have happened is that Jobs’ apparent survival would have been nine months longer but the end result would probably have been the same. None of this absolves the alternative medicine that Jobs tried or suggests that waiting to undergo surgery wasn’t harmful, only that in hindsight we can conclude that it probably didn’t make a difference. At the time of his diagnosis and during the nine months afterward during which he tried woo instead of medicine, it was entirely reasonable to be concerned that the delay was endangering his life, because it might have been. It was impossible to know until later–and, quite frankly, not even then–whether Jobs’ delaying surgery contributed to his death. Trust me when I say yet again that I really, really wish I could join with the skeptics and doctors proclaiming that “alternative medicine killed Steve Jobs,” but I can’t, at least not based on the facts as I have been able to learn them.

Steve Jobs’ eight year battle with his illness is remarkable not so much because he had a rare tumor or because he flirted with alternative medicine for several months before undergoing surgery. Rather, I see Jobs’ case as providing multiple lessons in the complexity of cancer, the difficulty of the decisions that go into cancer care, and how being wealthy or famous can distort those choices. I’ve said it before, but now is as good a time as any to say it again: In cancer, biology is still king. Perhaps one day, when we know how to decode and interpret genomic information of the sort provided when Jobs’ had his tumors sequenced and use that information to target cancers more accurately, we will be able to dethrone that king more than just part of the time and only in certain tumors.

Comments

  1. #1 Fred Magyar
    October 31, 2011

    Perhaps one day, when we know how to decode and interpret genomic information of the sort provided when Jobs’ had his tumors sequenced and use that information to target cancers more accurately, we will be able to dethrone that king more than just part of the time and only in certain tumors.

    Not likely to happen unless by some miracle humanity becomes a whole lot wiser and learns to control it’s ever burgeoning population. I can’t even imagine the devastating consequences if 7 plus billion rabidly consuming humans were to all suddenly have access to such medical treatment. Of course since such access is elitist and depends on the unjust accumulation of resources and wealth by a small minority we probably don’t have to worry much about this particular scenario. We will all just continue on our merry ways as we head on over the cliff into oblivion. It’s been quite a ride!

  2. #2 Brian
    October 31, 2011

    A bit off-topic, but are those direct, correct quotes from Isaacson? If so, it seems like it’s a poorly-edited book, cynically rushed out of the publishing house in order to be timely.

  3. #3 anarchic teapot
    October 31, 2011

    The Isaacson book is already translated and on sale here in France, which doesn’t help my rampant cynicism and misanthropy one little bit.

    Thanks for wading through it, Orac. I updated my own post on the woomasters trying to cash in on Jobs’s death to moderate my irritation and link through to this article.

  4. #4 Anthony McCarthy
    October 31, 2011

    Well, good. At least the attempt to float a rumor here that Dean Ornish was professionally negligent resulting in death might be suppressed. Though it shouldn’t have been raised without evidence in the first place.

    How many people who have suspicious spots here or there don’t get them looked at because they don’t have insurance? Jobs made a stupid choice but he was filthy rich and had a choice. How many of them don’t get to the point where someone sees a suspicious spot because they can’t see a doctor before they have to be taken into an emergency room? There are millions of Americans who don’t have insurance, don’t have adequate medicaid or medicare and don’t get timely medical care. I’m a lot more interested in that than in a small number of rich folks with medical superstitions.

    Jobs was obviously kind of nutty all on his own, in a lot of ways. That he might be in denial over the necessity for an operation could have as much to do with that as any misplaced belief in unproven remedies.

  5. #5 Anthony McCarthy
    October 31, 2011

    By the way, if his wife was trying to get him to eat “more fish” he wasn’t eating a vegan diet. Nor a vegetarian one. From the rest of the description, he had nutty eating habits that could have only been improved by eating a balanced diet, vegan or other kind. He doesn’t seem to have had much use for science in his personal life.

  6. #6 Bill Sardi
    October 31, 2011

    Who are you calling a quack? I cited scientific references to my assertions. And you speak off the top of your head and cite what? And you don’t know modern medicine has no cures for cancer? Get your head out of the sand. Cancer patients had better look for alternatives from the first day of diagnosis.

  7. #7 Gray Falcon
    October 31, 2011

    And you don’t know modern medicine has no cures for cancer?

    Mr. Sardi, is cancer a single condition, or a blanket term covering a large number of conditions? If you don’t know the answer to that, any further references are meaningless.

  8. #8 Raging Bee
    October 31, 2011

    Well, good. At least the attempt to float a rumor here that Dean Ornish was professionally negligent resulting in death might be suppressed. Though it shouldn’t have been raised without evidence in the first place.

    Still despeerately trying to cling to that lie, asshole? As has been pointed out to you more than once before, that “rumor” was discussed as a possibility to be considered, something that hasn’t been proven and might soon be disproven; not as a charge that could presently be supported by a preponderance of evidence.

    Stop trying to pretend you’ve been vindicated. Your statements have been proven false, and you have no credibility.

  9. #9 Reuben
    October 31, 2011

    And you don’t know modern medicine has no cures for cancer?

    Oh, crap. I have to tell my coworker who just got over Hodgkin’s lymphoma. Heck, this is what the NIH says about it:

    Hodgkin’s disease is considered one of the most curable forms of cancer, especially if it is diagnosed and treated early. Unlike other cancers, Hodgkin’s disease is often very curable even in late stages.

    So either Hodgkin’s is not a cancer, or it is and you’re WRONG. (My money’s on Hodgkin’s.)

  10. #11 Jud
    October 31, 2011

    Orac -

    Haven’t been here in a while, and hadn’t got the chance to call the Jobs topic to your attention, then saw you’d given it your usual thorough going-over from a science-based medicine point of view. Really a pleasure to read informative, intelligent stuff that avoids jumping to conclusions, obviously a danger and an all-too-common occurrence among publicity-seekers when a celebrity like Jobs is involved.

    Contrast Dr. Sardi, whose comment here and discussion of the Steve Jobs case at his web site is full of the sorts of excessive claims and absolutist language that uses citations and science-y sounding terms, but is not by any means science-based.

    Regarding turmeric specifically, the American Cancer Society’s discussion, more sober and balanced than Dr. Sardi’s, is here:

    http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/HerbsVitaminsandMinerals/turmeric

    It mentions drugs that suppress the immune system and non-steroidal pain relievers as contraindicated due to potentially dangerous interactions with turmeric. Think Jobs may have been taking chemotherapy (any chemotherapy regimen can suppress the immune system) and popping a few pain relievers? It also says turmeric made certain anti-cancer drugs less effective in animal and lab studies.

  11. #12 Denice Walter
    October 31, 2011

    As you may know, I wade through the miasmic effluvia that is alt med on a regular basis and notice trends and catch-phrases as they go in and out of fashion: “citing scientific references” is one I with which I often collide.
    I think it is part of the reason we call “cargo cult!” as often as we do: it involves adorning your “research” with the trappings of science while simultaneously not conforming to the methods and standards of science. “How is this done?”, you might ask.

    One of the “usual suspects” might cart in a study that is only vaguely related to the topic of interest while another might jump from *in vitro* to *in vivo* as though the only difference were that of spelling; conclusions are jumped to, assertions made, and aspersions cast; *un-related* studies that have only words in common are tossed in to pad the lengthening array of “sources” on the burgeoning reference list; speculative and anecdotal sources are added with pomp and ceremony. They even talk about “statistics” (( I shudder)).

    Our woo-meisters want to convince an *audience* rather than critics who have knowledge of the topic: audiences *buy* stuff. Usually the information presented “supports” the woo-meister’s whimsy-based idiosyncratic belief system about physiology, treatment, and life style. Vitalism and deification of “natural” ( usually plant) substances go hand in hand with demonising pharmacological products as though supplements grew on trees springing forth from the earth like the life energy of Mother Earth herself, then packaged for your convenience.

    If you were to follow a diet plan based on this “science-based” treasure trove of “phyto-nutrients” you would need to ingest various home-made green juices ( or smoothies) several times a day as well as highly specific plant-based compounds in supplement form ( the nearly endless list includes EGCG, carotenes, iso-flavones, flavinoids, antho-/ proantho-cyanidins,etc etc etc) and the usual vitamins and minerals in more “natural” forms, “not like those store-bought atrocities”. Plus a mostly raw, possibly vegan organic diet ( with a great variety of vegetables and fruits daily) and “pure” water would be required. Sounds like a full time job to me.

  12. #13 Anthony McCarthy
    October 31, 2011

    Raging Bee, I’ve given enough minutes of my life to answering your illiterate, psychotic manifestations. Anyone who is interested can go back and read the record, I’m going to hope that any rational people who aren’t interested will figure you out by your continued manifestations of irrationality.

  13. #14 Jud
    October 31, 2011

    Sorry, called Sardi “Dr.” because I managed to conflate Mr. Sardi and Dr. Wascher somewhat, since they both push turmeric.

    Dr. Wascher, whose resume indicates he should have a fair amount of science/medical cred, may (1) sincerely believe turmeric “couldn’t hurt” those currently without detectable disease, as well as those for whom surgery can’t be done or where it’s been unsuccessful (but see the contraindications for drug interactions at the American Cancer Society page I cited above); and (2) wish to take the opportunity to garner some publicity for his book, which again I’m sure he feels may help some people and at least couldn’t hurt.

    That sort of “end justifies the means” argument to legitimize excessive, premature claims such as his statement about turmeric curing Jobs, however, is a damned slippery slope. Wascher ought to take note of folks like Mike Adams quoting him liberally and decide whether he wishes to be a rich and famous author or try to remain a real doctor.

  14. #15 Raging Bee
    October 31, 2011

    Hit a nerve, did I, Anthony? Did someone say “thin-skinned character-assassin?”

  15. #16 Mrs. Woo
    October 31, 2011

    Of course it’s a full-time job. That’s why they have to convince everyone else on earth that they’re right and you HAVE to live on THEIR supplements to survive. How else are they going to make a living? (okay that’s a joke)

    I have realized rather recently (this past year) as hubby has continued to push woo at me that when I finally get past all of the alternative sites parroting what was said on whichever one started it that any real studies are at most in vitro and possibly (but not always) suggesting further investigation – at [b]best[/b].

    If it’s something that has been around longer and I can find later studies they end up with disappointing or conflicting results in further studies and drop the research. However, when you confront a true believer with this it’s just “Big Pharma” doing its best to suppress the truth – or they end up proving that there is a modest/mild effect at best, nowhere near what is suggested by the people marketing their wares.

    The true believers in alt med are the most frustrating. There is a group of people with my illness who insist they have been cured by adopting the “raw food smoothie” lifestyle. Strangely, the one pushing it most deleted all of her FB friends because she had been being too honest with them, describing this weekend here where she was too sick to get out of bed, the other two days there… She then created a FB group to further peddle her breakthrough, has her own internet radio show, etc., and everything posted publicly now is always only positive and glowing with the joys of recaptured perfect physical health.

  16. #17 Ted
    October 31, 2011

    Just when you thought laetrile was done and dusted. I hear travel to Mexico these days is dirt cheap.

  17. #18 Denice Walter
    October 31, 2011

    @ Mrs Woo:

    Although we may not be ablte to change the minds of the adamant true-believers, we can certainly cause fence-sitters to re-examine claims so cavalierly brandished on websites, in literary efforts, and even FB entries by showing *how* and *why* there is distortion facts and data as well as manufactured creations.

    I always bring it back to questions along the lines of: ” How likely is it that *one* person** found something entirely contrary to the consensus of thousands arrived at by ‘debate’ ( i.e. peer reviewed research) over decades?” , ” How likely is it that the ‘Truth’ is being obscured by the concerted efforts of thousands of dedicated Pharma/Governmental/ Institutional operatives over decades and that *one* person** enlightened us despite the efforts of the many to conceal their crime?” or ” How likely is it that this scenario keeps on happening over and over again- or so we’re told- by the same source**?”

    ** or is it more likely that that person might be lying/ compromised by a COI?

  18. #19 Stwart Jenssen
    October 31, 2011

    My husband of 30 years is alive and very well today after his pancreatic cancer diagnosis at the age of 37. We were told at the time he would not see his 38th birthday. He is now 55 years old. At the time of his diagnosis, only one surgeon was willing to help us as all our other avenues told us it was too late. After surgery, my husband elected not to have any chemo or any other radiation therapy. He battled for 12 months in recovery and slowly but surely he regained enough strength to go back to work full-time, very rarely having a sick day off. We were given a 1% chance of having anymore children and now have a grand 16-year-old boy. He has remained cancer-free to this day. When he is asked why he thinks he survived, he says, “It’s all in the mind.”

    Stwart Jenssen
    Findrxonline.com/blog

  19. #20 Calli Arcale
    October 31, 2011

    McCarthy:

    By the way, if his wife was trying to get him to eat “more fish” he wasn’t eating a vegan diet. Nor a vegetarian one.

    As I understand it, he was a pescetarian, which is a person who is vegetarian for the most part but will also eat seafood. Eggs and dairy are often also permitted, but not the flesh of any other animal, though I’m not sure where exactly Jobs was on that spectrum. There’s no official governing body for these sorts of terms, so different people define them slightly differently.

    I agree that from what is referenced in this article, he had a very bad diet that would have been helped by eating a balanced *anything* diet.

  20. #21 Mrs. Woo
    October 31, 2011

    @Denice -

    Sadly, I’m stuck with a “true believer,” and he seems to get worse the older he gets. He even believes in the NWO stuff, even though I pointed out to him that human nature being what it is that it’s kind of hard to believe there are a half dozen people who are manipulating the entire world – if they were that evil how would they trust each other?

    What is frustrating to me is that my disease has no really “good” treatment options and I hate seeing other patients, desperate for relief, willing to chase one promise after another while making themselves miserable in the process. I think one contributing factor to this is that some patients who latch on to something and try it either experience some relief through placebo effect or spontaneous remission (usually there is at least one) that happens close to the time they try it. Then they write and sell books about their “cure” (based only on their single experience), etc., and, of course, sell them by the truckload. Frequently the most appealing woo is the one that is created by “someone who has been there themselves and is now better.”

    Though I try to assure myself this is an HONEST wish to “help” others, the high dollar price tags and aggressive marketing on any blog/support group about the illness really make me wonder.

    When I was first diagnosed hubby bought one “ebook” about a cure for almost forty dollars. As I read it I discovered places that it discussed the wrong illness. When I googled the author’s name I found out this woman had a cure for just about every autoimmune disorder on the planet. She literally just went through and changed the book repeatedly putting in the different illness.

    More frustrating was that when I pointed it out to hubby instead of demanding a refund, etc., my spouse insisted I had to try the program anyhow since there “isn’t anything else.” Even finding out that this person was taking advantage of any desperate person she could think of was not enough to dissuade him regarding whether or not the woo would be effective.

    I try very hard in my online support group to encourage the patients to only use therapy that makes sense, PREFERABLY something well-researched and if not, at least something that sounds rational (i.e., improved diet can always make you healthier, regular exercises within the limitations of your disability can maintain and improve coordination, etc.). Whenever a “have you heard of this?” comes up I go out and research as much as I can and if I find nothing that really supports trying it I tell them so. If there is something rational behind it I refer them back to their doctor to be sure that it will be okay and/or to find out if the doctor might have better information.

    Woo makes most of its money from fear though, when you really look at it closely. You have to wonder how the ones who AREN’T true believers (thus at least doing it from the motive of helping someone else) sleep at night.

  21. #22 Vicki
    October 31, 2011

    Mrs. Woo:

    I am reminded of a line from an R. A. Lafferty story: “There is a society of seven men who run the finances of the world. This is known to everybody, but the details are not known. There are those who believe it would be better if one of the seven were a financier.” (From memory, so approximate.)

  22. #23 Kathy
    October 31, 2011

    I’m no doctor, but I think his strange cravings were a symptom of the evolving disease, even as a teen. His strange eating habits and cravings began while he was still in high school.

  23. #24 Calli Arcale
    October 31, 2011

    Kathy,

    I’m no doctor either, but although this is a slow moving cancer, I wouldn’t think it would be *that* slow-moving. He was 56 when he died; can a cancer take 40 years to kill you? I’m doubtful. I suspect his eating habits didn’t have very much to do with the cancer, one way or the other, but may have left him weaker due to inadequate dietary intake. (He lost 40 pounds, according to what Orac cited above. That’s pretty serious, especially since he was never particularly fat.)

  24. #25 herr doktor bimler
    October 31, 2011

    I am reminded of a line from an R. A. Lafferty story

    In which we also learn that “There is a secret society of only four persons that manufactures all the jokes in the world. One of these persons is unfunny and he is responsible for all the unfunny jokes.”

  25. #26 Roadstergal
    October 31, 2011

    She literally just went through and changed the book repeatedly putting in the different illness.

    Oh, god, I shouldn’t laugh – it sounds like those cover letters sent by high school students wanting to go to University X, explaning what a fantastic match for them University Y is. Only she is, you know, trying to bilk the sick, which is fucked up.

    or spontaneous remission (usually there is at least one) that happens close to the time they try it

    While listening to Tim Minchin on YouTube, which I find to always be time well-spent, I came across this brief introduction to logical fallacies (including ‘post hoc, ergo proper hoc’). (NSFW, of course.)

  26. #27 Dianne
    October 31, 2011

    Has anyone sent you a link to this example of alternate literature yet?

  27. #28 Ken
    October 31, 2011

    Isn’t this a simple counterfactual fallacy? “If my cure had been tried it would have worked.” I’ve noticed that it gets used a lot, usually only after there is no way to actually try the proposed solution.

  28. #29 Gutless Wonder
    November 1, 2011

    Having had a complete gastrectomy and two subsequent repairs of major diaphramatic bowel herniations, I’ve built up a lot of scar tissue which makes eating very difficult. Jobs had had pretty major rearrangements inside, no matter what the extent of his Whipple,and it just may be that he no longer felt hunger or had the inclination to eat. It happens when every mouthful is a major effort.Basically I can only eat small bite after small bite, slowly, throughout the day, and hope that the majority stays down. Contrary to popular assumption, even taking liquids can be difficult, and malnourishment with its attendant problems soon ensues.

  29. #30 Ian
    November 1, 2011

    When I am confronted by those pedaling the tiresome notion that there must be a conspiracy of conventional medicine suppressing the real cures for cancer, all in the name of profit, I try to avoid arguing the evidence, as generally their minds are made up. I however can’t help but note that this surely must be the greatest conspiracy of all time, making the mafia look like they can’t keep a secret. However, the truly amazing thing is that when cancer touches us personally, not only do we let our wives and children die, but make the ultimate sacrifice and go to our own graves, refusing these “cures”, all to protect the “secret.”

  30. #31 Ivan
    November 1, 2011

    Awesome post I really enjoyed it and hope to see more, keep at it.

  31. #32 Calli Arcale
    November 1, 2011

    Gutless Wonder — thank you for sharing your experience. People often underestimate how bad a lack of appetite can be. They think “oh, I wish I had that problem; then I wouldn’t be so fat!” but it’s really not something to want. I hope that you are able to find more ease of eating at some point.

    Steve Jobs had poor eating habits even before his surgery, though. Long before. He was a picky eater, basically. I wonder if this made it even more likely he’d develop serious problems eating enough food post-surgery than an average person.

  32. #33 ChemoMan
    November 1, 2011

    Bill Sardi said

    “And you don’t know modern medicine has no cures for cancer?”

    Gee that’s news to me Bill. Considering ‘modern medicine’ has given me 3 years of complete remission from an aggressive blood cancer I find you statement ridiculous. There are legions of people around the world who like me are enjoying many trips around the Sun thanks to ‘modern medicine’ The evidence is overwhelming and for you to ignore it and state that ‘Cancer patients had better look for alternatives from the first day of diagnosis.’ proves to me that you are indeed a quack

  33. #34 DLC
    November 1, 2011

    Anybody here remember the fellow who fell from a great height of medical research to the great low of vitamin C quackery?
    Proof that the great can fall for nonsense.
    Despite his line of work, Steve Jobs was much more of an artist than a scientist. Not saying it’s a bad thing, but just that artists tend to have their fads. They tend toward impulse over careful deliberation. I can’t say this cost Jobs his life. by the time they found the tumor on his pancreas it may have been too late. Perhaps acting sooner could have gained him more life, or perhaps not. Either way, it’s an iron-clad certainty that going to one of those quack scammers like Gonzalez would have severely limited his life — been worse than no treatment at all, in fact.

  34. #35 lilady
    November 2, 2011

    @ Stwart Jenssen: Was there any reason that your posting at # 19 referred us to that “particular” blog…that exclusively sells Schedule II and Schedule III drugs on line? It also appears that there is a lot of misinformation posted about addictive and abused drugs from a Florida Pain Clinic.

  35. #36 lilady
    November 2, 2011

    @ Stwart Jenssen: I have another question for you. On Orac’s blog “Mike Adams vs the flu vaccine” you posted at # 76 where you claimed to be quite desperate to get the influenza “jab” that recently was denied to you by your G.P., in spite of sleep apnea, an immune compromising condition and COPD.

    Your “British” spelling led me to believe that you reside in the U.K. and were denied the flu “jab” by the NHS.

    I provided you with two postings from the NHS about eligibility for the “jab” based on your COPD diagnosis. Unfortunately, I didn’t key in the “Pharmaspider.com” beneath your name, which I have now done.

    Pharmaspider.com is another online drug dealer that advertises it can sell Valium without a prescription and it “specializes” in selling all the benzodiazapine-class of drugs in addition to specializing in selling opiate-class drugs.

    Would you care to respond to my questions about you “shilling” for on-line drug websites specializing in drugs that are frequently abused and implicated in overdose deaths?

  36. #37 joyce morrell
    November 2, 2011

    Our data suggests the risk of duct cell dysfunction was doubled in patients who smoked compared to non-smokers,” said Dr. Vivek Kadiyala, in a statement presented at the American College of Gastroenterology’s annual scientific meeting in Washington, DC, this week. http://bit.ly/vTRAyV

  37. #38 lilady
    November 2, 2011

    @ Stwart Jenssen: Is there a reason why on Orac’s Blog “Mike Adams vs the flu vaccine” you posted about not being able to get a flu “jab” even though you have COPD?

    Not realizing that you again “added” another internet drug seller, and assuming that you were from the U.K., I provided web sites for the NHS to prove you were qualified.

    The internet site you provided on that post advertises sales of Valium without prescriptions as well as other benzodiazapines, Schedule II and Schedule III drugs for internet purchases.

    Care to comment on these sites that you have posted here?

    Why should we believe you were looking for a free influenza “jab” and why should we believe your story about your “husband’s” long term survival from pancreatic cancer?

  38. #39 Mrs. Woo
    November 2, 2011

    lilady, after a google of “stwart jenssen” and finding a profile on Facebook that also has links to buy drugs online I’m assuming that this is a spammer attempting to get paid for click throughs of people who are searching for ways to get narcotics on the internet. :-|

    I noticed that everything also has “Florida pain centers” in it. Sadly, Florida has become “known” as an “easy” place to get drugs. The sad thing is that the better doctors now know this and new patients can’t get access to narcotics at all, regardless of the medical condition and documentation of it. Another thing that makes me kind of cranky about the selfishness of a lot of the general population. You have the cranks offering false cures, the addicts and party kids that want to illegally use narcotics… all of these people affect real people in need and they either don’t care or don’t want to know.

  39. #40 lilady
    November 2, 2011

    Thanks Mrs. Woo. I guess I’m too gullible and fell for the first story of the person supposedly in the U.K. looking to get the flu jab.

    I’m only too aware of those that “game” the system with phony injuries to get the government goodies of early Medicare disability then get doctors who operate “pill mills” to prescribe tons of opiates, that are sold on the street for extra cash. There are also medical suppliers who operate out of a post office box, bill for phantom medical supplies and split the “take” with the patient.

    We desperately need to hire Medicare/Medicaid fraud staff to stop these scammers.

  40. #41 Mrs. Woo
    November 2, 2011

    @lilady

    You are so right. The issue is that it can be very difficult to tell genuine pain patients from ones who are “milking it,” so to speak. I was very fortunate that when I got sick I had an existing seven-year relationship with my primary care doctor. I was also uninsured at the time and he provided pain management at probably a third of what it would have cost at a specialist. In return I am VERY “good” about prescriptions from maintaining a single source pharmacy to calling in for prescriptions with only small amounts of lead time (enough to be sure that it’s ready the morning I want it around what I might know of his schedule, like his Wednesday volunteer days when he isn’t in the office).

    Legitimate pain patients often feel helpless in the current situation. There is all too much awareness of the ones gaming the system (they get plenty of press), but the ones doing everything right and obeying the rules are invisible and uncounted. I subscribe to the American Pain Foundation’s updates, both the paper and internet, and regularly read of new ways that the government tries to get control of the problem, and it often causes further difficulties for the innocent, with doctors that have been doing their pain management announcing they are discontinuing doing so (usually with a month’s notice) and no one willing to take the sudden glut of patients for fear of drawing law enforcement attention. I know it is anecdotal, but I also know a few who this has happened to personally.

    One of my biggest shames in being disabled by my condition is the awareness that all of the ones who have figured out how to “game” the system creates the prejudice by many that I am probably also doing so.

    I’m guessing your work brings you into contact with a lot who are gaming the system? I wish the people who aren’t doing anything wrong were more visible sometimes. Sadly, we don’t show up much because we’re not bothering anyone.

  41. #42 lilady
    November 2, 2011

    @ Mrs. Woo: Actually I worked as a public health nurse, mainly in communicable disease case surveillance…I’m retired now. I did see TB patients in public health clinics, some of which were in some dicey areas, where there were some “pill mills” in storefronts nearby.

    Years ago, patients with “drug-seeking” behaviors were some of the “frequent fliers” who showed up in hospital E.R.s. Now with the availability of “pill mills” and the ability to get opiates on the streets, it is easier to purchase a stash of one’s favorite prescribed drug.

    I also know a lot of doctors and nurses who work in County offices that “qualify” patients for disability, who have shared stories of patients (who are in the minority of those seeking to qualify), who try to “game” the system. A close friend who is a medical doctor and has quite severe asthma tells some hilarious stories of patients whose respiratory function is far better than hers…on her “best day”.

    I hope you didn’t infer from my posting that I lump all patients who take medicines for chronic painful conditions as “scammers”. Nor did I mean to state that pain management doctors or family practice doctors who also at times prescribe opiates for pain for their patients, are in any way unscrupulous. IMO, if a doctor doesn’t prescribe and treat a patient adequately for pain, that physician has failed to provide appropriate care.

    Hubby is a retired lawyer and his close buddy from law school “busted” nursing home owners/operators in New York State for billing and bilking Medicaid out of tens of millions of dollars, for services that were never provided or not warranted. It “made” his career in public service.

    Mrs. Woo, I’m all about bringing health care costs in this country under control toward balancing the budget. I am firmly in the camp of those who want a national health care plan in place. The first priority of government is to investigate the few “gamers”, their pill doctors and everyone else who enable them, so that vulnerable disabled people in our society are provided for under our Medicare/Medicaid system.

  42. #43 B.Dav
    December 18, 2011

    Bill Sardi said

    “And you don’t know modern medicine has no cures for cancer?”

    Childhood ALL Leukaemia has cure rates of ~ 90%
    Cure rates on AML adult Leukaemias in has also dramatically increased over the last few decades ~70% for certain the lower risk cytogenetics. Prior to modern medicine Leukaemia prognosis was virtually 0% survival. I have seen this in my working life making & administering chemotherapy to patients who where on the brink of death (white cell counts exponentially higher that normal)given much longer to live and often with difficulty in treatment – but most say its worthwhile. Yes there is a 5% or so chance of complications from fatal chemotherapy induced infections – however the alternative is 100% no survival. For those who are not cured and they can get a few months extra of reasonable life – which for many is still fortunate.

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