Respectful Insolence

Let me begin this post by offering my sincere condolences to Fabio Lanzoni. His sister died about a month ago. As you might recall, she had ovarian cancer She was unfortunate, and she suffered and ultimately, apparently, died of her disease at far too young an age. If that were all there were to the story, that would be all there is to this post. Unfortunately, that is not all there is to the story; so that can’t be all there is to this post. You might recall that Fabio brought his sister Christina to be treated by Stanislaw Burzynski and, in doing so, allowed himself to be sucked into promoting the most recent propaganda film about Burzynski by Burzynski’s very own propagandist, Eric Merola. He appeared at a screening of the film in April, where he used the story of his sister to provide a testimonial of how awesome Burzynski is, how Burzynski is supposedly curing cancers that conventional medicine can’t, how he fully expected that Burzynski was the one man who might be able to save his sister.

I actually knew that Fabio’s sister had died not too long after it had happened, but I didn’t have any hard evidence, just anonymous reports. So I didn’t say anything, not being able to verify that it was in fact true that his sister Christina had died. Now I can, as Fabio has written a tribute to his sister and posted it on the website of his fan club entitled In tribute to my sister, Christina Lanzoni. It’s a simultaneously moving and disturbing tribute. It’s moving because, as I pointed out in previous posts, it’s very clear that Fabio loved his sister deeply. It’s disturbing because he still seems to be laboring under the delusion that Burzynski could have saved his sister. It’s written in a rather strange fashion as well, starting with describing the sense of loss and grief his family if enduring and thanking all the well-wishers who had sent their condolences. He then expresses his thanks to “doctors, nurses and staff at University General Hospital and at the Burzynski Clinic for their tireless efforts in prolonging my sister’s life and easing her pain.” This struck me as odd. I had never heard of University General Hospital before, and I found it odd that it was mentioned in the same breath, so to speak, as the Burzynski Clinic. So I did a bit of Googling.

University General Hospital (UGH) is a publicly owned 72 bed general acute care hospital in Houston. Its website, which is rather bare-bones, describes it as having been “designed from the ground up to suit the most exacting requirements of superb, state-of-the-art medical treatment while pampering patients and families with an inviting environment that encourages relaxation and healing” and advertises concierge services for visitors, luxurious private rooms with “five star” decor, flat panel televisions with 45 channels, wifi, free valet parking, and world-renowned physicians using the “most advanced technology available.” It also claims “patient care dedicated to excellence.”

All of this sounds well and good, but I took a look at its oncology doctors. Among them are Stanislaw Burzynski, Alejandro Marquis, Jose Valladeres, and Zanhua Yi, all of whom are doctors at the Burzynski Clinic. This struck me as very strange indeed. For one thing, none of these doctors, save Drs. Yi and Valladares, are board-certified or board-eligible in hematology and oncology. Indeed, Burzynski and Marquis aren’t even board-certified or board-eligible in internal medicine! It’s very strange that UGH would grant these two privileges in even internal medicine, much less hematology and oncology, but grant them it did. It’s also very strange just how bare bones the UGH profiles are on these doctors and pretty much every other doctor. In fact, I have yet to find a doctor profile at this hospital that is anything more than a name and medical school. Similarly, its Facebook page is minimally active.

More interestingly (and appropriately when it comes to Burzynski), UGH has been sued for fraud by joint-venture partners in an Alvin, Texas regional hospital project, and has been criticized for high Medicare expenses, while there have been complaints by patients about the facilities. These days, the hospital system seems to be doing quite well financially at least, although it had to pay down a $2 million lien placed on it by the IRS in 2009 for unemployment and quarterly withholding taxes and is apparently facing multiple other lawsuits, including a $1.4 million lawsuit by Kingswood Emergency Center, LLC for unpaid management and guaranteed fees, among several others.

Business concerns aside, I’d be very concerned about a hospital that would grant admitting privileges to doctors like Burzynski and Marquis, neither of whom could even be credentialed for managed care plans because they are not board-certified or board-eligible. From my reading, I gather that UGH started out as a bariatric surgery center and only more recently has evolved into a multispecialty general acute care hospital. It’s also obvious that it’s trying to appeal to the high end, at least as far as facilities go, in that it’s advertising all sorts of luxury accommodations, seemingly far more than its medical services. When a hospital system can’t even be bothered to put pictures and brief bios of your physicians, to me that’s an indication that it just doesn’t really care about its doctors and that medical care is not necessarily at the top of its list of concerns.

Be that as it may, unfortunately Fabio’s sister spent a lot of time at UGH in her last days. I say “unfortunately,” because it sucks for her that Fabio’s sister would spend so many weeks in the hospital at the end of her life so far from home instead of spending that time back at home in Italy with her family. In any case, the rest of the tribute to his sister reads as though it were fed to him by Burzynski and Merola themselves; it just doesn’t sound like the writings of a man whose only desire was to memorialize his recently departed sister. It’s a bunch of bullet points:

  • When I went to visit my sister in Italy in March, she ways literally days away from dying from dehydration. Her Italian doctors recommended giving her a multivitamin and said she had only 2 weeks to live;
  • I flew her out to my home in Los Angeles and made immediate arrangements for her to check in to the Burzynski Clinic in Houston;
  • She arrived at the clinic in a wheelchair. Right away the clinic addressed her infection that was causing discomfort and pain, her dehydration and severe electrolyte abnormalities, and began the diagnostic process. She had her tissue analyzed. She harbored a unique gene signature. They tailored her medicines appropriately. Within 3 weeks, she went from wheelchair bound to exercising on a treadmill. Within approximately 6 weeks of treatment, an important biomarker of her disease called CA125 went from the 6000 range to the 3000 range. This signified improvement.

These first three bullet points give us more detail about Christina’s situation at the time Fabio first saw her after her treatment for ovarian cancer. First of all, if she really was that dehydrated, then simply treating her dehydration, even if whatever Burzynski did had zero effect on her cancer, would be guaranteed to rapidly make Christina look and feel much better. Now one thing that has to be remembered is that, as far as we can tell, Christina did not undergo treatment with antineoplastons, as she appears to have arrived in the US after the FDA had extended its partial clinical hold on pediatric antineoplaston clinical trials to adult clinical trials as well, as that happened in January or early February, and Fabio started appeared at the screening of Eric Merola’s movie in late April.

So what is being described above appears to be Burzynski’s “personalized gene-targeted cancer therapy” (for dummies, as I call it, or “making it up as you go along”). The first thing I wondered about was the CA-125 levels, which were off the charts. In the case of an ovarian mass, a CA-125 level of around 65 is highly suspicious for ovarian cancer, and a normal CA-125 is usually under 35. A value of 6,000 suggests that poor Christina’s tumor burden was massive indeed. Also, there are different kinds of CA-125 tests, a first generation and a second generation test, and these can produce different results. We don’t know when the two tests being compared were taken? Was one done in Italy and the other done after Christina had received treatment? Another important issue is Christina’s reported dehydration. If she were as severely dehydrated as reported, it’s possible that her CA125 level could be elevated. Finally, CA-125 tests is that they can fluctuate quite a bit over time; that’s why it’s the overall trend that matters. A single decreased level, although a hopeful sign, doesn’t necessarily tell a clinician much other than that things could be going in the right direction. Moreover, when the value we’re talking about is between 150- and 300-fold higher than normal, there’s a lot of tumor there.

Next up:

  • After the CA125 drop there was a setback. Due to her compromised immune system from prior therapies (27 rounds of chemo), she developed a major blood infection that thankfully was caught, saving her life, but forced her off treatment and back to a hospital. In fact, her last round of chemo was for sarcoma and not for ovarian cancer (This is the beauty of socialized medicine);

I wrote about Fabio’s account of Christina’s prior therapies before and how the chemotherapy that was likely used can be used for both sarcoma and ovarian cancer. Fabio’s harping on this reeks of a line fed to him by Burzynski and bespeaks an ignorance of cancer therapy. Of course, no one expects Fabio—or any other non-professional—to be knowledgeable about cancer biology and therapy. What I hate is how Burzynski is using Fabio, feeding him a line of BS, all to convince him that, if it hadn’t been for a couple of bad breaks, he really could have saved Christina. Given her tumor burden, there was no way Burzynski could have saved her. Sadly, there was no way anyone could have saved her, but Burzynski played on Fabio’s false hopes and convinced him that he, alone of all cancer doctors, might be able to save his sister. In any case, notice how Burzynski blames the infection on a compromised immune system from previous treatment, even though he had been treating Christina for over six weeks. That’s more than long enough for the immune system to recover from most chemotherapy. If Christina was immunosuppressed, it was far more likely due to the advanced cancer itself, the witches’s brew of chemotherapy and expensive targeted agents that Christina received courtesy of Stanislaw Burzynski, or a combination of the two than it was likely to be due to the chemotherapy Christina received in Italy.

This leads us to the final four bullet points:

  1. Even though there was success in treating the cancer as indicated by her CA125 drop as well as radiological scans, she still complained of pain in her abdomen. At that point she was seen by a surgeon who performed a laparoscopic procedure;
  2. The procedure revealed that the treatment was working. Then she needed to be rehabilitated in order to prepare for another surgery to remove adhesions, scar tissue and fluid that had solidified;
  3. During the second surgery, the surgeon found a lot of solidified fluid, and to his surprise noted that she had virtually no small intestine left due to a botched surgery that had been performed in Italy;
  4. This explained her malnutrition. She could no longer properly absorb any food;
  5. The final surgery she had, completely relieved her from any pain and allowed her to be taken off pain medication.

I would love to know what gynecologic oncologist or surgical oncologist operated on Christina not just once, but twice. More than likely, the pain in her abdomen was due to either tumor burden or a partial bowel obstruction due to the tumor. If indeed she was in such bad shape, I’d have to wonder why anyone would operate. What was the intended result?

Ovarian cancer is a nasty actor. In general, rather than metastasizing distantly (i.e., to the lung or outside of the pelvic and abdominal cavities), it tends to spread along the peritoneal surfaces throughout the abdomen. The treatment of ovarian cancer differs from that of most other solid tumors in that the goal is not to remove every last bit of visible tumor, as is the case for almost every solid tumor. Rather it is to debulk the tumor such that the smallest remaining visible nodules fall below a certain size and then to treat with chemotherapy to eliminate those nodules. No doubt that is what surgeons in Italy tried to do. Indeed, in my previous post, I discussed what Fabio said about his sister in April, noting that she had undergone surgery to remove her ovaries and uterus for her ovarian cancer but that she had developed a recurrence that had led to surgery that ended up requiring the resection of a “three foot piece of bowel.” Interestingly, back in April, Fabio matter-of-factly discussed this. Now he’s describing it as “botched surgery.” As a surgeon myself, I have no idea what the Italian surgeons found, but clearly they thought it necessary to resect a large chunk of bowel. Sometimes, as a surgeon, you have no choice, and sometimes you accept the risk of short gut syndrome because that much bowel has to be resected. I bet that’s what happened in Italy; Christina’s surgeons probably couldn’t adequately debulk her ovarian cancer without removing that much small bowel.

It’s also hard to reconcile Fabio’s description of his sister’s surgery as having involved removing three feet of small bowel with his later description of her having “virtually no small intestine left.” The reason is that removing three feet of bowel should not in most cases cause short gut syndrome. What the surgeon at UGH appears to have found is adhesions from previous surgeries plus the “solidified fluid,” which could very well have been mucin from mucinous ovarian cancer. All of this is a sign of advanced disease, but then we know that already.

Finally, Fabio directs a comment that I can only view as being directed at me:

As for the so called doctors on the internet who discredit her treatment program, it seems shameless and irresponsible for you to offer any opinion without having met her, let alone having examined her first. Your actions do nothing to save lives or advance medical science. They are no more than simple marketing gimmicks and promotional tools. And that is something I do know a thing or two about.

I can understand why Fabio might lash out. Seriously, I can. He’s grieving, and he thinks that bloggers like me are attacking the person who, were it not for an unfortunate turn of events, would have cured his sister. That he’s wrong about Burzysnki’s ability to save his sister (he couldn’t) doesn’t make the intensity of his belief or his grief any less. Sadly, it is just these sorts of emotions that allow Burzynski to do what he has been doing for 36 years.

Comments

  1. #1 Pris
    The Dark Side of the Force
    September 16, 2013

    That poor woman. Cancer is a horrible way to die.

    Instead of dying surrounded by her family she had to die far away from home.

    All because of some quack.

    People like B., who defraud the sick and dying, really piss me off.

  2. #2 Darwy
    Røde grøde med fløde
    September 16, 2013

    I’m sorry to hear she’s passed; at least she’s no longer suffering. Those that she left behind will be for a while, though. It’s been 8 years since I lost my sister to cancer, and the pain hasn’t really lessened.

    Rest in peace, Christina.

  3. #3 Damien
    September 16, 2013

    Burzynski can never fail, he can only be failed. And as someone who is very close to his sister, I can sympathize with Fabio here, I’m so sorry that this happened.

    The victims of cancer are lamented, but those treated by the quacks doubly so.

  4. #4 DLC
    September 16, 2013

    My condolences to Mr Lanzoni and his family.
    That being said, it should be noted that Burszinski is rapidly heading down the road that has signposts labelled Gerson and Clark, and with routing to backdoor clinics in Mexico.
    By the way, is it me, or do the rest of you find “University General Hospital” to have the amusing initials “UGH” ?
    As in UGH, don’t go there.

  5. #5 Ren
    September 16, 2013

    Very sad for his loss. I’d go crazy if I lost any of my siblings. No further comment… Orac covered all the bases.

  6. #6 AnObservingParty
    September 16, 2013

    This is very sad, and it is unfortunately made doubly-so when those who have been taken in in moments of grief and hopelessness are so heartlessly used by quacks. It’s a terribly vicious cycle, and while we may get frustrated with them, the victims aren’t to blame.

  7. #7 Edith Prickly
    September 16, 2013

    I’m sorry for everything. Sorry for Fabio’s loss. Sorry that Christina spent her final days at Burzynski’s mercy instead of in palliative care surrounded by family and friends. Sorry that Burzynski scammed another person into letting him put a terminally ill loved one through hell and helped himself to a large chunk of Fabio’s fortune to do it. Sorry (and angry) that Burzynski is still using Fabio to promote his useless treatments after they failed to do anything to prolong his sister’s life. Burzynski is a ghoul.

  8. #8 Michael Finfer, MD
    September 16, 2013

    You should look in to the ownership of University General Hospital. It sounds like a doctor-owned specialty hospital. Could Burzynski be a part owner?

    I doubt the reference to sarcoma. She may have had a malignant mixed mesodermal tumor, which is an epithelial tumor with sarcomatous metaplasia, not a sarcoma. It’s hard to know without a pathology report.

    Third, this family should be referred for genetic counseling.

  9. #9 lilady
    September 16, 2013

    I’m sending condolences to Fabio Lanzoni and the entire Lanzoni family.

    I believe more needs to be stated here, however and my opinions are strictly my own and are directed at Fabio.

    Fabio, you promoted the second Burzynski propaganda film based on your decision to seek help for your beloved sister Christina, not based on any knowledge of chemotherapy or the other modalities used by real oncologists. We don’t know who directed you to the Burzynski Clinic…it certainly wasn’t a physician who practices medicine that is based in science.

    You have done a great disservice to your fans and other credulous people, who, for some reason, believe that a celebrity endorsement of a doctor or a treatment, is reliable.

    I hope that you will seek the advice of an oncologist who is associated with a large cancer treatment center to interpret the appropriateness of the treatment that Dr. Burzynski provided to Christina, as well as the articles that Orac and other science bloggers have written about the Burzynski treatment protocol.

    Your actions do nothing to save lives or advance medical science. You were used by Burzynski and the Burzynski P.R. team. And that is something I do know a thing or two about.

  10. #10 lilady
    September 16, 2013

    @ Dr. Finfer: More on UGHS…its finances…its corporate officers.

    http://ir.stockpr.com/ughsystem/quote

  11. #11 Scared Momma
    September 16, 2013

    @Darwy, I am very sorry you lost your sister. My sisters are my heart.

    I.don’t.understand. Is it all for money? Contempt for science and medicine? Why make people suffer needlessly? Isn’t there enough pain in the world to add on more?

    Very very sorry for this family’s loss and her pain. If only all resources were put into stopping cancer, instead of needless waste . . . I can’t imagine. Thank you to all of you here, and of course Dr Orac.

  12. #12 Denice Walter
    September 16, 2013

    Because Fabio ( is that short for ‘Fabrizio’?) is well-known, it’s easier for us to observe and track how a chartalan mis-uses family members like him as well as the patient.

    And I do believe that he has been sorely mis-treated at a time when he was ( and is) very vulnerable- as all of us are when a family men is grievously ill.

    So it’s not only the patient who is abused. He has my sympathies doubly.

  13. #13 Denice Walter
    September 16, 2013

    edit: when a family MEMBER is grievously ill.

  14. #14 Bob
    September 16, 2013

    I talked to a few people in the know, including a GYN surgeon, and they said that you could not prognosticate on the basis of CA125 levels. Another person wondered if the type of test that was being used was reliable at those levels of CA125. Fabio was and is being used. He should be appalled and he should disavow himself from the Clinic. They did nothing meaningful for him or his sister.

  15. #15 Mike
    Latham, NY
    September 16, 2013

    “They are no more than simple marketing gimmicks and promotional tools. And that is something I do know a thing or two about.”

    Then you really should’ve noticed what Burzynski was pulling on you…

  16. #16 Todd W.
    http://www.harpocratesspeaks.com
    September 16, 2013

    My condolences to Mr. Lanzoni and his family. So sorry for your loss and the suffering your sister had to go through away from home.

    On the topic of UGH, it was started by former stockbroker Kamran Nezami. Michael Finfer is correct that it is a physician-owned hospital venture. Their last JCAHO survey came back as meeting overall national patient safety goals, but fell below targets on infection control. Patient experiences were not all that stellar, either.

  17. #17 TBruce
    September 16, 2013

    Once again, my observation is confirmed that wealth and fame can get you the worst health care that money can buy.

  18. #18 Eric Lund
    September 16, 2013

    DLC @4: Yes, I also noticed the hospital’s unfortunate acronym. Unfortunate but quite likely appropriate: I don’t think it’s normal for a hospital to have had the kind and extent of legal difficulties this one has had. That’s aside from marketing themselves to high-end patients while neglecting the sort of quality control that would keep a Dr. B off your core staff (I could understand them giving him admitting privileges, but letting him be on staff when he isn’t even qualified as an internist, let alone in oncology? WTF?).

  19. #19 AnObservingParty
    September 16, 2013

    I want to know why they didn’t meet the national average for colon SCIP measures and if it affected their infection rate. SCIP is pretty basic. Especially since colon procedures are soon up for NHSN reporting for CMS. I doubt a place like this would be PPS-exempt (in fact, I know they aren’t), although even that’s going away.

  20. #20 Ander Elessedil
    Italy
    September 16, 2013

    @Denice Walter.

    Fabio is a normal name in Italy, distinct from Fabrizio.
    It isn’t a short for no other name.

  21. #21 Denice Walter
    September 16, 2013

    @ Ander:

    @ Grazie!

  22. #22 herr doktor bimler
    September 16, 2013

    On the topic of UGH, it was started by former stockbroker Kamran Nezami.

    Link was borked, Todd W (as is the way of the Scienceblogs interface). The Great Gazoogle led me to a story about UGH’s struggling finances.

  23. #23 Rose Taberner
    Sydney, Australia
    September 16, 2013

    Condolences to the Lanzoni family.

    This story touched me!. I am Italian and I have HER2 Breast Cancer.
    I am now angry..very angry. I cant comprehend how the likes of Burzynski, Charlotte Gerson, Gonzalez and all the other quacks can still ‘practice’ and get away with it. I have even come across some ‘wellness’ sites requesting money for patients to attend these clinics. God help them!
    Yep, I have been poisoned, cut (breast and all lymph nodes) and burnt – and still having Herceptin. I have complete faith in my (science based) medical team and I would do it all again. Dr Slamon is my hero!
    I pray for the day that these quacks are stopped and people can return to enjoying their good Italian espresso coffee – orally!

  24. #24 elburto
    September 17, 2013

    The best of luck to you Rose, and you’re right, doctors who use science-based medicine are heroes. I’d be long dead if it wasn’t for medical science, hell- I wouldn’t have made it out of my humidicrib!

    I’m so sad for Fabio’s family, that they were deprived of a proper farewell to their beloved Christina. I’m angry that once again Count $camula has fed on the hope and desperation of a dying woman and her family, and despite failing them (as ever) has been hailed as a hero.

    Sick. He robs people of their time, dignity, family, and money. People spend their dying days shuttling back and forth to his chamber of horrors, hooked up to his bizarre concoctions, and end up dying in a strange place surrounded by people they don’t know. It’s a disgrace.

  25. #25 Todd W.
    http://www.harpocratesspeaks.com
    September 17, 2013

    @hdb

    Grr. Hate when my links get borked. Let’s try again.

  26. #26 ronald jones
    Houston
    September 17, 2013

    I feel that it is truly funny how little people know of a profession or a person and can base their entire understanding of a situation on a 7-point thesis written in true blog form. At no place during this rant did he provide any information that was actually given firsthand and also never did he speak with anyone in concerns to what was actually being performed on the patient. There are no medical records cited at any point and the only source other than a webpage containing very little information, a facebook, and some public records concerning pending suits against the hospital there is nothing to truly support his ideas other than himself. Its all a bunch of propaganda founded on assumptions. In fact, the only truths here are that the hospital has been and is currently dealing with legal trouble and that a patient died from cancer.

    • #27 Orac
      September 17, 2013

      Gee, Ronald, you wouldn’t happen to be affiliated in some way with UGH or Dr. Burzynski, would you? Just wondering…

      In any case, it’s really very silly of you to castigate me for not having medical records, given that what I’m discussing is how Christina Lanzoni’s tragic death is being spun by her brother as praise for Burzynski and a defense of his practices.

  27. #28 ronald jones
    Houston
    September 18, 2013

    I simply feel as though if you were to make a case against a medical professional you should at least have medical records and/or the opinion of another or an opposing medical professional. It seems as though you have very strong feelings towards the hospital and are not backing this up with much more than your own logic and bias. Also, to blame Burzynski as the cause for her untimely death when she was already very sick and under his care began to show signs of regaining health. Cancer is a serious thing and allegations founded on one’s own understanding of a particular situation, one which you are obviously detached, having no knowledge of the circumstances other than those which her brother professed. This makes your story short of a well-rounded interpretation of actual events. To put it plainly, it makes it hard for me to see this as anything other than slander and defamation without those types citations and sources. I understand how some people may feel a certain way about a thing, but this haphazard style of blogger journalism isn’t journalism at all, its something totally different, its gossip. If her brother felt that Burzynski did all he could and did better for her than previous practitioners so be it. Furthermore, people die from cancer every year, quite a few I might add, and yet why is it only Burzynski’s name on this entry, why not add a few more and give those others that fell victim to the disease their day as well. Everyone who has ever had a bout with cancer knows the risks and they all weigh their options. For some the wildcard seems like a much better option than some others. Its their choice to make and its not for us to criticize their choices. it is their life on the line and to mettle in their affairs is to say the we know what’s best for them when we, who have no understanding of their situation, do not. I feel that is amoral to harp on this or any other tragedy for that matter, especially if you cannot be bothered to look outside yourself for source material.

  28. #29 Alain
    September 18, 2013

    Ronald Jones,

    By your account, no one should comment about medical professional. Period.

    I’m sorry but that’s not the way it work because only a stupid person would take at face value anything said by a person of authority (among other person too).

    Did you decide to be stupid? In any case, not me and I welcome careful investigation of claims by the burzinski clinic and I suspect, no one here decide to be stupid.

    Alain

  29. #30 Woo Fighter
    September 18, 2013

    Mr. Jones,

    I suspect you are new here and have never taken the time to peruse some of Orac’s writing. Burzynski is not his only target, although he has dedicated tens of thousands of words worth of blog posts exposing, analyzing and explaining what Burzynski is up to.

    After almost 40 years of making wild claims, Burzynski has yet to prove anything in a scientifically-valid way, all the while raking in millions upon millions of dollars from desperate cancer patients and their families.

    Rather than rehash all the usual “talking points” I’d recommend you type “Burzynski” into the search box and catch up on two years worth of posts. I’d also recommend you check out Josephine Jones’s archive of material about Burzynski. That should get you off to a good start in understanding why Orac, and science bloggers all over the world, have been shining the light on the unethical practices going on in Houston and trying to stop him.

    I’d also recommend you check out who Orac really is. Just click on his name in blue at the very top of this article.

  30. #31 AdamG
    September 18, 2013

    it makes it hard for me to see this as anything other than slander

    That word. I do not think it means what you think it means.

    it is their life on the line and to mettle in their affairs is to say the we know what’s best for them

    But you don’t have a problem with Burzynski taking advantage of patients through false hope and pseudoscientific treatments?

  31. #32 Woo Fighter
    September 18, 2013

    AdamG,

    The way I forced myself to remember the difference is that “slander” and “speech” both start with the letter “s”. “Libel” and “literature” both start with the letter “l”. Once one applies that simple mnemonic device, one never makes that mistake again.

    Of course none of what Orac has written about Burzynski is libellous either. I suspect that’s what you really meant in your message to Mr. Jones, and that’s what Mr. Jones doesn’t understand.

  32. #33 Young CC Prof
    September 18, 2013

    @ronald jones: Let me explain this simply.

    No one blames Burzynski for this woman’s death. It sounds like her cancer was too advanced for anyone to treat.

    Orac DOES blame him for promising that a cure was possible, demanding large amounts of money, causing her pain and suffering, and (as always) not actually curing.

  33. #34 lilady
    September 18, 2013

    Did someone mention “mettle”?

    “Its their choice to make and its not for us to criticize their choices. it is their life on the line and to mettle in their affairs is to say the we know what’s best for them when we, who have no understanding of their situation, do not. I feel that is amoral to harp on this or any other tragedy for that matter, especially if you cannot be bothered to look outside yourself for source material.”

    Okay. I will agree that mettle is exactly what Orac has:

    http://www.thefreedictionary.com/mettle

  34. #35 Woo Fighter
    September 18, 2013

    Ha ha! Good catch, lilady!!

  35. #36 lilady
    September 18, 2013

    Just for you Woo Fighter…just for you. :-)

  36. #37 Militant Agnostic
    September 18, 2013

    @Todd W

    Patient experiences were not all that stellar, either.

    Neither are creditor experiences it would appear. This looks like the tried and true business model of collecting cash up front from your customers and paying your suppliers and subcontractors with talk.

  37. #38 Erin (aka EEB)
    k ////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////
    September 18, 2013

    A couple thoughts…

    First, I have short-gut syndrome myself (I have a little over 3 ft of small intestine left) and if his sister really did only have 3ft left, it’s understandable how she could become so dehydrated, especially if she was feeling sick from the treatments or the cancer itself. Keeping hydrated and making sure I’m meeting my nutritional needs is pretty much my job right now, and it doesn’t take much for me to land in the hospital to get fluids (and sometimes supplemental IV nutrition…if I’m lucky, a bag or two of potassium, but if I’m really sick, a few days of TPN).

    And if she was that dehydrated before going to Burzynski, and he was the one of oversaw the treatment, I could easily see she and Fabio believing he was a miracle worker! Now that I’ve been dealing with this for a couple years, I know when I’m dehydrated, and I know when I’m potassium deficient. But when it first started happening, I thought I was dying. (Well. To be frank, I was. One ER doc told me that I had the lowest potassium level of anyone she’d ever seen–my fault, because I didn’t want to go to the ER, even though I knew I was sick. But because I put it off, instead of an evening getting a couple bags of fluid, I ended up spending several days in a cardiac ward until my levels were better.) Very few things feel as miserable as dehydration, and especially potassium deficiency! It’s like the worst flu you can imagine. Body aches, face (and other body parts) go tingly and/or numb, light-headedness and vertigo to the point that you can’t stand up or walk. And then added to that, your heart is beats super fast and sometimes does that “skipping a beat” thing–except it’s NOT cute and romantic, it’s fucking terrifying! (And painful,) It also induced a seizure for me.

    But the nice thing is that it’s a relatively easy fix where you start feeling worlds better instantly. It’s absolutely tragic, but it seemses ro bbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbnnbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnn

  38. #39 Erin (aka EEB)
    September 18, 2013

    Um. Wow. I have no idea what happened there. I was working on the comment, stepped away from my computer, and came back to see that it had posted. I’m assuming either my dog or on of the kids mashed the keyboard. (I’m sorry, Orac. Could you delete it, maybe?)

    What I was attempting to say…

    First, I have short-gut syndrome myself (I have a little over 3 ft of small intestine left) and if his sister really did only have 3ft left, it’s understandable how she could become so dehydrated, especially if she was feeling sick from the treatments or the cancer itself. Keeping hydrated and making sure I’m meeting my nutritional needs is pretty much my job right now, and it doesn’t take much for me to land in the hospital to get fluids (and sometimes supplemental IV nutrition…if I’m lucky, a bag or two of potassium, but if I’m really sick, a few days of TPN).

    And if she was that dehydrated before going to Burzynski, and he was the one of oversaw the treatment, I could easily see she and Fabio believing he was a miracle worker! Now that I’ve been dealing with this for a couple years, I know when I’m dehydrated, and I know when I’m potassium deficient. But when it first started happening, I thought I was dying. (Well. To be frank, I was. One ER doc told me that I had the lowest potassium level of anyone she’d ever seen–my fault, because I didn’t want to go to the ER, even though I knew I was sick. But because I put it off, instead of an evening getting a couple bags of fluid, I ended up spending several days in a cardiac ward until my levels were better. Now, my Mom knows to just drag me to the hospital when I get to that point, because I can’t make good decisions when I’m that sick.) Very few things feel as miserable as dehydration, and especially potassium deficiency! It’s like the worst flu you can imagine. Body aches, face (and other body parts) go tingly and/or numb, light-headedness and vertigo to the point that you can’t stand up or walk. And then added to that, your heart is beats super fast and sometimes does that “skipping a beat” thing–except it’s NOT cute and romantic, it’s fucking terrifying! (And painful,) It also induced a seizure for me. You can’t think, you’re scared, you hurt, you can’t move, all you can do is sit and be utterly miserable.

    But the nice thing is that it’s a relatively easy fix where you start feeling worlds better instantly. It’s absolutely tragic, because (to me, and just based on what Fabio has said and written; obviously) it seems like Burzynski gave basic treatment (on top of the other stuff) that made her feel worlds better, and so they both assumed that it was working. Which would their hopes, raise their willingness to put up with continued treatment, instead of starting palliative care and going home to be with family. And give Burzynski a dedicated supporter at the end, who truly believes that the “conventional” doctors killed his sister, and Burzynski would have saved her, if only they had gotten their quicker. All of which puts more money in Burzynski’s pockets.

    He is pure evil.

    From this, and from other posts I’ve read (especially with that little girl who had the tumor, the one Burzynski told the family was getting better when it was obviously–to an oncologist–getting worse), it seems clear that Burzynski knows what he’s doing. He isn’t honestly confused and causing harm out of ignorance (which would be bad enough), he is deliberately lying and manipulating patients. Maybe he thinks the ends justifies the means, and he’s securing the ability to help other patients, which is the best light I can put him in, and it still makes him scum. I hope it’s not all about the money, I truly, truly do, but. *sigh*

  39. #40 lilady
    September 18, 2013

    @ Erin: Orac commented that he found it hard to believe that Christina prior history of the resection of 3 feet of her small intestine caused dehydration and or short gut syndrome (Typical women have 20 feet of small intestine remaining, after a 3 foot resection).

    He went back to listen to Burzynski movie premiere and what Fabio had said about his sister’s condition prior to leaving Italy, and found some inconsistencies. I too, found inconsistencies…but then my expectations of what Fabio knows about his sister’s condition are not that great. He had “stuff” fed to him by Burzynski. Of course Stan would never lie//sarcasm…and Fabio has the capability to understand complex medical details//sarcasm…without allowing his animus directed at oncologists to befuddle him//sarcasm.

  40. #41 Pareidolius
    The Law Offices of Metal, Mettle & Meddle, Esq.
    September 18, 2013

    Orac is the king of Heavy Mettle.

  41. #42 Calli Arcale
    September 18, 2013

    I would not expect Fabio to have the exact details right, especially right after her death. What we can expect is to see him recount whatever doctors have most recently told him, since that is what people generally do, and the doctor he most recently would have spoken to about his sister would be Burzynski. Ergo, I think Orac is correct in his suspicion.

    My aunt died about ten years ago after a long battle with ovarian cancer. Fourteen years from diagnosis, which is very unusual; her case has wound up in a number of studies, and probably will continue to do so; coming from a medical family and married to a surgeon, she was happy to allow samples to be donated for scientific purposes.

    She had many remarkable periods of remission, where she was able to enjoy life, traveling the world, getting to know her first few grandkids, and more. But eventually the disease claimed her anyway.

    One place she never tried was the Burzynski Clinic. If she were still alive, I’d ask her why, but she was a pretty shrewd lady; I’m sure she was able to tell what looked fishy and wasn’t worth trying.

  42. #43 herr doktor bimler
    September 18, 2013

    Orac is the king of Heavy Mettle.

    Put the petal to the mettle!

  43. #44 Woo Fighter
    September 19, 2013

    Not totally off-topic:

    Eric Merola just tweeted that randomized controlled trials of ANPs are “now complete” and suggests results are soon to be published. I’m holding my breath.

    Burzynski Movie‏@BurzynskiMovie
    #Antineoplastons – Randomized Controlled Trials complete. What will happen when a peer-reviewed journal publishes it? #burzynski – Thoughts?

  44. #45 Krebiozen
    September 19, 2013

    Woo Fighter,

    I’m holding my breath.

    Procedure is not recommended.

    I can’t wait to see this publication or publications. Either:

    1. Burzynski will be vindicated and a new effective cancer treatment will become available, albeit a few decades and several thousand dead cancer patients late or

    2. The results will be equivocal, barely statistically significant and generally underwhelming, but hailed as a huge success by Merola et al.

    My money is on scenario 2.

  45. #46 Woo Fighter
    September 19, 2013

    From Merola’s Facebook page (The Burzynski Movie page):

    just want to ask a random question – what do you think will happen when the Japanese Randomized Clinical trials of Antineoplastons (ANP), showing double the survival rate in the ANP group – hit peer-review publication?

    Do you think the National Cancer Institute and the American Cancer Society will update their materials documenting that randomized studies are complete, peer-reviewed, and published? Do you think the paid Astroturf campaign who own the Wikipedia page will allow Wiki to be updated? Do you think those same people will boycott the medical journal who publishes it? Will oncologists, after reading the peer-reviewed randomized study finally accept it as the proven therapy it is? Will the FDA allow ANP to enter the so-called “free market” – finally?

    Share your thoughts.

  46. #47 Lawrence
    September 19, 2013

    Hmmmmm…..I think a simple “nothing” because the Japanese study isn’t going to be published……

  47. #48 Woo Fighter
    September 19, 2013

    I’m surprised Merola is under the impression his followers have the ability to think…

  48. #49 MedTek
    September 19, 2013

    Actually the “trials” have been “complete” for some time. The Burzynski fans (including Eric) have been saying he’s going to publish “imminently” for months. Fabio said that Burzynski had submitted “2 million” pages of data for publishing (to whom?). I was told in December by @burzynskisaves (not the Sheila incarnation) that publishing was going to occur in a couple of months. This has not happened and I doubt it will. Given that Burzynski’s own lawyer states that the trials were pretty much a sham, I wouldn’t recommend breath holding to anyone.

  49. #50 Krebiozen
    September 19, 2013

    MedTek,

    “2 million” pages of data

    That sounds like a gishgallop in study form. Someone should invent a method of summarizing large amounts of data. They could name it something like “statistics”.

    This has not happened and I doubt it will.

    One might demand that they put up or shut up. If Merola is a true believer in Burzynski, as appears to be the case, I would expect him to be pushing for publication to shut up the skeptics. I wonder how he will rationalize the reluctance he will doubtless encounter.

    That’s a question I often ask myself, in one form or another. How does someone with a large investment in a belief system deal with the cognitive dissonance of finding out it isn’t true?

  50. #51 Woo Fighter
    September 19, 2013

    I knew about the “two million pages” of research but Merola is now claiming it’s a Japanese ANP study to be published. See my post, quoting his recent Facebook page, at comment #46. I think Merola is referring to the Japanese doctor from the second movie (the one who says in the promo blurbs “it’s not anecdotal anymore…”)

  51. #52 Woo Fighter
    September 19, 2013

    I checked back to some of my posts under my old ‘nym here, and it was actually “two-and-a-million” pages of data that Fabio claims Burzynski sent to the FDA in the video.

    Someone on Twitter estimated that would be a stack of paper 800 feet high!

  52. #53 Woo Fighter
    September 19, 2013

    That should have read “two-and-a-half-million” pages.

  53. #54 MedTek
    September 19, 2013

    Apparently the Japanese study was rejected by the Lancet so they gave up, or something. Theatre of the absurd.

  54. #55 herr doktor bimler
    September 19, 2013

    publishing was going to occur in a couple of months. This has not happened and I doubt it will.

    Can’t Burzynski spare $900 or so for a journal from SCIRP or one of the other vanity-press publishers?

  55. #56 grp
    September 22, 2013

    Is this the Fabio that is famous and has the long hair? WHY is it that these stars all seem to get suckered into believing people like this? It seems they are the same crew that also get sucked into the alien “religion” of Scientology. Seems like nothing but a bunch of morons out there in LA LA land!

  56. #57 Khani
    September 22, 2013

    Plenty of smart people *do* get suckered, and there are a number of psychological tricks that work *better* on smart people than stupid ones.

    I’ve read a lot about various types of scammers and I would caution everyone, *especially* people who think they would never fall for such a thing, that *anyone* can indeed fall for such a thing, particularly if it hits them at a vulnerable time, in a vulnerable area.

    Also, to be fair, rich and famous people are going to be targeted far more than ordinary people for these sorts of things. They have money.

    Fabio is the victim here. Let’s not get into victim-shaming.

  57. #58 try again Khani
    September 25, 2013

    @ Khani-well then using your logic should the people who worship and follow Kim Stagliano, Jenny McCarthy and others be considered “victims?” Sorry, but Fabio and the others who follow snake oil salesman like this have their owns brains. They just choose not to use it. I don’t feel Fabio is a victim at all. His sister was but he most cetainly is not.

  58. #59 Woo Fighter
    September 26, 2013

    After months and months of DJT begging for a “debate” about Burzynski, Bob Blaskiewicz has decided to indulge him in online this Saturday morning at 10 a.m. ET on Google Hangouts. As the end seems to be looming for Burzynski, and as DJT is becoming more and more unhinged, there should be much hilarity ensuing (as Orac would say…)

    I’m not sure how to join Google Hangouts yet but maybe Bob can chime in here to tutour us in how to watch the fun in real time. Of course Bob will wipe his ass but it should be entertaining to watch DJT twist in the wind. to use an overworked boxing cliche, DJT is punching out of his weight class.

  59. #60 Sherri Kilpatrick
    United States
    October 24, 2013

    I’m sorry to hear about his sister. My husband’s sister died from the same disease at the age of 49. She went to a hospital in Houston for clinical trials, but I don’t know if it was the same place. Her cancer spread to her lungs as one point, which you say is rare.

    In one procedure at the Houston hospital, they opened up her abdomen and inserted a hot tube of some sort of chemo or other drug. The idea was to burn away the cancer. Not long after that, she died.

    It was later found that her type of ovarian cancer, when put in a petri dish and subjected to all the known types of treatments, was resistant to everything. That was when she opted for the clinical trial.

  60. #61 Divine
    November 4, 2013

    I miss her. My medicine lies within the memory of how much laughter we shared in one sole sunshiny afternoon. Words cannot express how much I cherish that experience. Often, lately, I will reflect on a tidbit of conversation and giggle. Until we see each other again,… Ciao beautiful bella.

  61. #62 Divine
    Heaven
    November 21, 2013

    I am going to leave this here, for you Christina.
    http://www.youtube.com/watch?v=DDDlxmsciqY
    LA PACE E LA GRAZIA

  62. #63 Milly
    Italy
    December 2, 2013

    Why was an extremely ill hospitalised woman in such a state of dehydration? If this is the kind of ‘care’ offered then its not worth much.

  63. #64 Milly
    Italy
    December 2, 2013

    Unfortunately cancer sufferers go to this Burzynski clinic as a last resort after being ‘treated’ by chemo and radiation. There chances are already very low. I had a brother diagnosed with brain tumour at age 21. He died at age 38. His survival due to the fact that he never did any chemo.

  64. #65 lilady
    December 2, 2013

    @ Milly: We only have Fabio’s statements about the care his sister received in Italy and while undergoing treatment at Burzynski’s clinic.

    Perhaps you would like to pose those questions on Fabio’s fan page?

    http://www.fabioifc.com/

  65. #66 Mephistopheles O'Brien
    December 2, 2013

    Milly – you state that your brother survived for 17 years after being diagnosed with a brain tumour and that the reason he survived so long was that he did not have chemotherapy.
    - How do you know that his life was lengthened by not having chemotherapy?
    - What treatment did he have?
    - Was chemotherapy indicated but refused?

    Sorry to hear of your brother’s death.

  66. #67 Divine
    CIELO
    December 3, 2013

    FRATERNO AMATO SORELLANZA

    http://www.youtube.com/watch?v=VpNOoq0kFds

  67. #68 Divine
    CIELO
    December 5, 2013

    Suspicious am I of the intent concerning the “maker” of comment #66. First name originating out of German folklore being a derivative of the Devil. And last name Irish
    .
    Therefore Jesus said again, “Very truly I tell you, I am the gate for the sheep. I am the gate; whoever enters through me will be saved. They will come in and go out, and find pasture. The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full. John 10:7, 9-10

  68. #69 Lawrence
    December 5, 2013

    @Divine – actually, MoB asked a very good question….perhaps you should answer, rather than resort to religious platitudes…

  69. #70 Mephistopheles O'Brien
    December 5, 2013

    Divine – I really don’t understand how my intent could be so suspect in my questions. Does my ‘nym’s Irish last name really raise that many red flags? In this case, Milly made some statements and I’d like to understand what she knows and how she knows it. I asked in the nicest, most respectful manner I could.

    What that has to do with sheep gates is beyond me.

  70. #71 herr doktor bimler
    December 5, 2013

    First name originating out of German folklore being a derivative of the Devil. And last name Irish

    I harbour lingering doubts as to whether “Divine” at comment #68 is really an emanation of the Godhead.

  71. #72 Mephistopheles O'Brien
    December 5, 2013

    I assumed Divine was Harris Glenn Milstead, or an homage to same.

  72. #73 Khani
    December 5, 2013

    Well, you know those terrible Irish people, always spreading their horrible diseases, like Phytophthora infestans.

  73. #74 Divine
    Here
    December 6, 2013
  74. #75 Renate
    December 6, 2013

    Just reading some comments under the video, makes me think we still have a long way to go.

  75. #76 Divine
    Serendipity
    December 6, 2013

    Vain is the chiming of forgotten bells
    That the wind sways above a ruined shrine.
    Vainer his voice in whom no longer dwells
    Hunger that craves immortal Bread and Wine.
    Light songs we breathe that perish with our breath
    Out of our lips that have not kissed the rod.
    They shall not live who have not tasted death.
    They only sing who are struck dumb by God.
    ~ Joyce Kilmer ~

  76. #77 Divine
    Synchronicity
    December 6, 2013

    Chances are more probable than possible that Milly’s brother’s best intuition, or “hunch” if you will, was to live out his best life with cancer, instead of suffering through various other treatment options available to him at that point in time.
    http://www.flowpower.com/What%20is%20Synchronicity.htm