Hello, Matt… We simply have to stop meeting like this…
Nothing personal, but I sure wish you’d stop making me do more and more advertising for Burzynski.
For those who haven’t been reading all the Burzynski posts and comments, I’ve posted Matt’s response to a previous post at the end of this article. You should read it. I post it out of respect for his perspective, and as an illustration of the paradigm that we are all educated into. In fairness to him, I will tell you that I had incorporated a previous comment of his into the article he is now commenting on. I couldn’t help it.. he represents the mainstream paradigm so well, and I was in a particularly intolerant mood.
If he’s who I think he is, he appears to be a Post-Doc Fellow who is working on HIV virus research at a university in the western United States.
(Post-Doc is short for Postdoctoral, and it is supposed to translate to non-post-docs as I’m mucho smarto…. Fellow means he’s working almost for free and at the mercy of whomever is funding him for as long as it takes to get smart enough to work on his own. Anyway, that’s the way us Pharmacists translate it. You know how it is – They’re smart, we’re smarter…. typical occupational bias.)
A large percentage of his work appears to be funded in part by the NIH (National Institute of Health). I’ve read a couple of his papers. He and the team he works with are actually pretty sharp.
Anyway, I’ve thought about his posting for a few days, wanting to find a way to make this conversation educational for ‘our’ readers.
So, I will answer your questions, Matt, but I’m sure you and I are simply going to have agree to disagree.
First, though, I’d like to say that I’ve spent a lot of time trying to figure out why in the world a Post-Doc Fellow working on HIV research would have any interest in reading, studying and debating Dr Burzynski’s papers and therapeutic claims. I did not come up with an answer. The Post-Docs I know are way too busy to mess around with anything other than their research. I remain puzzled. Maybe it’s because of the NIH connection, or a personal tragedy during which a friend or family member got taken advantage of by a huckster claiming to have a cure for cancer. If you are who I think you are I suspect the NIH connection is the most likely motivator, or maybe you’re just a really astute and curious person. But it really doesn’t matter.
In your questions to me you repeatedly reference peer reviewed work, as if the world stops working if a gathering of equally indoctrinated individuals having the power to approve or disapprove a work is ordained by God. I understand the importance of good solid peer reviewed works. But, I don’t interpret the lack of it the same way you do.
You see, I’m probably about twice your age – and over this long life I’ve done a lot of things. One of them was to work as the personal product engineer and troubleshooter for the President of a semiconductor company that manufactured many state-of-the-art integrated circuits that were believed to be technically impossible. All the experts said they could not work. But, I assure you, they shipped to the world in great quantity. The applications included cardiac pacemakers, devices sent into space in satellites, devices used to track submarines, devices used in the phased array radars of state of the art warplanes, and numerous other appications.
I never ceased to be amused when the President of the company would quietly slip out of the conference room when the customers’ ‘experts’ would start explaining the technical reasons the parts wouldn’t work or couldn’t be relied upon to perform as specified. I asked him what was going on the first time I saw him do this. His reply still rings in my mind. He told me that they did not want to learn from him, only to lecture, and that his time was too valuable to waste it sitting in a room with a bunch of overpaid people who had advanced degrees and knew nothing about true discovery.
I would also tell you that I was best known for fixing problems others couldn’t fix, and implementing applications that others had failed to get to work repeatedly. The key to my success was very simple. I didn’t listen to the people who had failed when they told me why they had failed. I followed the evidence I gathered myself, and figured out why what I had observed had happened later – and I learned to quietly leave the room when the ‘experts’ and intellectual purists started explaining why things weren’t working. Hell, if they knew what they were talking about I wouldn’t have had a job.
This is the approach I have taken on this website. I am not interested in intellectual debates that consume time and achieve no forward motion. Cancer patients do not have time to screw around. The fact is that few are cured. My objective is to provide them options that I believe have some reasonable probability of extending their lives.
As an engineer I knew that getting 95% of the products I was responsible for to work and ship to the customer was the minimum standard for keeping my job. Lower yields told the world I didn’t know what I was talking about.
Well, if you look at cancer patients as the products we’re supposed to be shipping the fact is that we can’t even claim a 5% long term success rate.
So, I tell you without reservation that we don’t know what the f…k we’re doing when it comes to conventional cancer treatments.
You asked me what the relevence of my reference to the article that showed that chemotherapy only added something like 1.4% to the long term survival of cancer patients. Well, it is – for all practical purposes – illegal to treat cancer using anything but chemotherapy and radiation in all 50 of the states that comprise the United States of America. I repeat, we don’t know what we’re doing.
Matt, I work in a hospital that treats many cancer patients. We only use conventional treatments, but I assure no costs are spared.. our patients get access to the most cutting edge treatment regimens that exist in America. But, unfortunately, no one gets well unless their cancers are discovered when they are small enough to be cut out.
I know you might not believe this. I really don’t care if you do or not. I am the one who watches them die every week, not you, and I don’t know any way to convey what I see happening every day to someone who resides in an academic environment.
You asked me what treatment alternatives patients might consider incorporating into their treatment plans to increase their survival rates. Are you blind? Take a look at the directory for this site. It’s a listing of multiple treatment options that have evidence that supports possible usefulness.
I do not guarantee they will work, and I do not encourage trying them without physician involvement and support. But I guarantee you that I would try them if I had cancer. I strongly believe that for many cancers you have as good a chance with these alternatives as you do with conventional treatments.
So, it really comes down to this… I am busy trying to get info that I have critically evaluated to people who might be able to use it. I do not care why the information about these options has not been checked out and/or formal studies haven’t been performed, and I do not believe people should wait to die without trying something different just because no one has funded a clinical trial that meets the standards we normally expect from approved medications.
People will have to decide for themselves whether I know what I’m talking about or not. If they want to try other options I have provided the detail they and their physicians need. If not, that is their choice.
In the meantime, I’m going to quietly slip out of the room. I have work to do.
“I believe the exchange typifies the difference in perspective between those who are willing to critically analyze and search out data and those who support the mainstream approach.”
Steve, please tell me what I’m failing to analyze critically; what peer-reviewed paper I have failed to read? Aside from Burzynski’s 2006 Pediatric Drugs paper which, I will say again, uses questionable methods and a very small cohort, what evidence of efficacy has he presented? Where is this evidence?
Despite your claim to be “a very skeptical pharmacist”, you seem not to see that data is only as good as the method used to collect and analyze it: If you omit drug failures from a clinical trial, you will always get a positive result. If you use a small patient cohort, even the most impressive rate of improvement may not be statistically significant. If you don’t use a placebo group, you can’t say how many people would have improved without therapy. Method is the most important and persuasive argument for any claim.
“conventional therapies [do not work] if not augmented by non-traditional concepts”
Please provide a reference for this statement and what, exactly you mean by “non-traditional concepts”.
You say that “…the reviewers hid behind the fact that they didn’t like the way Dr Burzynski structured his trials and quantified his data.”
As I understand this, you would propose that the data collection and analysis method has nothing to do with what the outcome. Put another way, the data quality and means of subsequent analysis has no influence on the results of that analysis. Is that correct?
If so, that makes no sense. I know that, in my own work, I could show a false positive, negative or neutral result, depending on how ethically flexible I am in analyzing the data. And, if I am selective about the data I collect, well I could support or refute any hypothesis I want.
Regarding the Barton et al.: I’m not sure why that’s relevant. A lot of Burzynski supporters seem to use a common straw man argument: If you’re don’t support antineoplaston chemotherapy, you must support standard chemotherapy. I find this a bit troubling because I only wish to discuss antineoplastons and evidence of their efficacy. Straw man arguments assume a false pretense – that I must necessarily approve of B simply because I express my disapproval of A.
I’m going to go out on a limb here an say that a big reason you think that Burzynski’s antineoplastons work because you FEEL he is an ethical doctor, but that’s not evidence, that’s a feeling.
I’m willing to accept that you support Burzynski because you felt he gave you good care – I cannot argue with that, and no one should. Cancer is horrible and it ruins lives. Anyone who has gone through the illness and the treatment, win or to lose, is a hero in my book, and should be allowed to pursue whatever treatment they like. But saying that unproven drugs work is a different argument entirely. There just isn’t any evidence.