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View Diary: Monday Night Cancer Club: What Are We Getting for Our Money? (86 comments)

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  •  Absolutely not. (7+ / 0-)

    I am not going to go into a lot of details here.  This could -- and should -- be a diary of its own.  I'd rather not write it, but I suppose I will at some point if I must.

    Burzynski does not cure cancer.

    A few days ago, there was a front-paged diary about how the Cancer Treatment Centers of America weren't really the great deal they look like in their commercials.  They cherry-pick their customers, they massage the data on their success rates, and they make a LOT of money in the process.  There's actually a lot of other problems there, too, including leaning on "integrative medicine".  But at least, to CTCA's credit, they do also treat their patients with real standard-of-care practices.

    Burzynski?  Makes CTCA look like saints.  The whole thing is quackery.  His "treatments" cost a fortune, even though most of them are ostensibly drug trial studies -- studies that he's kept open for years, or in some cases over a decade, because FDA drug studies don't have any technical closing date requirement and, hey, loophole!  What little science has actually been published on his work pretty much reveals it to be pointless at best, and when he does actual treat with real medicine, he overcharges for that, too.  The very small number of "success" cases he's had have been people with types of indolent types of cancer prone to spontaneous remission; most of his patients do not improve or survive, and there have been a number of his relatively high profile cases who have died here recently.

    Look, more than most people, I understand what an awful, awful thing cancer is.  My fiancee is going to die from it here very soon now, almost certainly in a matter of weeks, and things are already kind of rough for her.  I understand the desire to reach for anything that gives a glimmer of hope, to try to save the life of a partner or a child.  I understand.

    Burzynski does not offer that glimmer of hope.  He's a fraud and a predator of people at their weakest moments.  Don't be taken in.

    "All opinions are not equal. Some are a very great deal more robust, sophisticated and well supported in logic and argument than others." -Douglas Adams

    by Serpents Choice on Tue Mar 19, 2013 at 07:06:19 AM PDT

    [ Parent ]

    •  I'm not saying support the guy (2+ / 0-)
      Recommended by:
      peregrine kate, ZenTrainer

      I'm saying do independent research on antineoplastons.  It's worth taking a look at, even if he does own all the patent rights.  We are paying for research for much more ridiculous things in cancer treatment, why not have an independent look at his treatment.

      So I'm not saying anyone should go to his clinic or give him money.  I am saying some research scientists should do independent studies to attempt to replicate his results, with his exact protocol.

      •  That research exists (5+ / 0-)
        Recommended by:
        RubDMC, Sylv, cv lurking gf, slouchsock, Avila

        Well, more or less.

        I'll skip the organic chemistry background here.  Burzynski's antineoplastons aren't novel compounds.  They're a pair of normal metabolites, phenylacetic acid and phenylacetyl glutamine, along with the prodrug (that the body turns into those two), sodium phenylbutyrate.

        And, surprise!  There's actually real science about these things, dating back to the 1950s!  Sodium phenylbutyrate is treatment for some obscure metabolic disorders, and has actually had real studies as an oncology drug.  It's in a class of drugs known as histone deacetylase inhibitors; other HDIs, including Vorinostat and Romidepsin, are in use as therapy options for a specific form of lymphoma. Sodium phenylbutyrate itself has been the topic of a bunch of studies, which have been sort of a mixed bag.  For most cancer types, it doesn't seem to do anything at all.  For promyelocytic leukemia and malignant glioma, there's at least some evidence that it might.

        None of which makes Burzynski less of a quack. He's still abusing the drug trial process, charging tens or hundreds of thousands of dollars for what are at best described as experimental therapies (and, note, in legitimate clinical drug studies, you aren't charged fees like this...). And his dosing protocols are very hazardous, at times 10 to 100 times the tolerance threshold established for sodium phenylbutyrate by real science (this has caused significant medical issues for some of his patients in its own right).  Not to mention the fact that he espouses his product as treatment for forms of cancer where we know it's not, and that he wraps it all up with salesmanship of the worst order, which you can see in everything from the "targeted gene therapy" claims (it's not) to the fact that he can't seem to publish a single paper after over a decade, but he's got the time for not one, but two, PR movies.

        Burzynski is not a heroic crusader.  He's a quack and a fraud, and his work tarnishes the reputation of legitimate medical science and muddies the waters for real potential treatments.

        "All opinions are not equal. Some are a very great deal more robust, sophisticated and well supported in logic and argument than others." -Douglas Adams

        by Serpents Choice on Tue Mar 19, 2013 at 07:38:59 AM PDT

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        •  again, I'm not saying he's a heroic crusader (1+ / 0-)
          Recommended by:

          I am saying the fact that his treatment (and you can add air quotes if you like) has caused remission in childhood brain cancer, even in a handful of cases, where the prognosis is generally so horrible, is worth independent research.  If his stuff might help treat malignant glioma, WE SHOULD BE RESEARCHING IT.  Not him, other scientists.  Researching it.  But we aren't.

        •  I think this is also true of our standard (4+ / 0-)

          treatment for cancers.

          For most cancer types, it doesn't seem to do anything at all.  
          He charges fees because the FDA has blocked all sources of funding. I think you can disagree with him but I feel it's unfair to call him a quack.

          I am a little uncomfortable with his notion of owning patents but hey the US has been busily snapping up his patents, there must be a reason.

          I just think that you shouldn't be able to patent things that will save lives. They should be public domain. But, I am a socialist living in a democracy.

          Tracy B Ann - technically that is my signature.

          by ZenTrainer on Tue Mar 19, 2013 at 09:27:28 AM PDT

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    •  I meant to reply in your last diary, S C, (6+ / 0-)

      but got distracted.
      I hope that these next few weeks can be as peaceful and pain-free as possible for your fiancee, and that she will remain lucid enough to have some good moments with you and her children for many days to come.
      This most difficult gift of love you are providing for her, keeping company during her last days, takes my breath away. Blessings to you all.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Tue Mar 19, 2013 at 08:20:19 AM PDT

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    •  He has a pretty good success rate for a fraud. (3+ / 0-)

      And years ago when I first heard of him what grabbed my attention was the absurd lengths that the FDA went to try to stop him.

      I am planning a diary on him alone but I suspect it will have a slightly different slant than your might so I welcome your coments in it.

      It took an act of congress to allow him to continue his research. Notice that the FDA isn't trying to shut down CTCA? They are a politcal body and this is just a part of the politics of cancer.

      I cried when I watched the documentary Burzynski just recently. Thinking of all the people who could be helped if his research were funded.

      The politics of cancer. A friend of mine who is a biochemist and spent 20 years looking for a cure for cancer walked into work one day to find that the whole research department was closing down. More money in the pharmaceutical side. 52 researchers laid off.

      At the same time another big research company did the same. Only they laid off 150 researchers.

      As with anything, follow the money.

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Tue Mar 19, 2013 at 09:21:52 AM PDT

      [ Parent ]

    •  somebody (0+ / 0-)

      ought to write about Burzynski, and it can be entirely factual (investigations, false data, etc).  i completely agree with you, SC.  

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