A guest post by Keir Liddle^
Skeptics and critics of Dr Burzynski’s antineoplaston treatment have been scratching their heads of late at the removal of all references to ANP on the clinics website.
Why did a reference to Dr Burzynskis miraculous brain cancer cure suddenly disappear? Was it because of an FDA letter regarding inappropriate and inaccurate promotion of the treatment?
That seemed the obvious explanation until @medtek on twitter discovered that the FDA had been doing a lot more than simply sending the clinic letters.
According to a Burzynski patient blog*, the clinic has been undergoing an FDA audit.
From the blog:
The Burzynski Clinic is going through some issues right now. They are in the process of getting audited for the past month by the FDA. The FDA has also gotten approved to continue their audit for another month.
But why has the clinic been prevented from taking on new patients? The answer is truly shocking and raises very serious questions over the standards of medical care being provided at the clinic. Again from the patients blog;
The FDA stopped new pediatric patients because a child had went into a tumor related coma and did not get enough water during treatment, thus spiking the sodium level to a fatal level
The risk of hypernatraemia arising from ANP treatment has been well documented during the investigations of skeptics and critics into the clinic. Concerns have been raised time and again about this potentially fatal side effect and the clinics response to it. I paraphrase slightly, but not much, when I state the clinic’s response to dealing with this side effect was to tell patients to “drink lots of water”.
That the clinic themselves, if this patient blog is to be trusted, cannot advise in more detail the amount of water required for patients and thus risk a child’s life is horrifying.
Here we have evidence that ANP treatment can and does cause harm. To the extent the FDA has had to step in and prevent more patients receiving the treatment. Prior to this all critics could conclude is that the weight of evidence did not support ANPs as a treatment or cure.
Now we can see there is a very real danger from ANP treatments and one that is not mitigated by any medical advice or treatment offered by the clinic.
One would hope this is finally the end game for Burzynski and that after 35+ years of abject failure to show ANPs are anywhere near useful as a cancer treatment he may now be forced to stop selling false hope.
In the late 90’s Quackwatch failed and despite the best efforts of many skeptics and scientists it looked like Dr B would be free to continue.
It’s a tragic shame that it may have taken the threat to a child’s life to finally stop Burzynski.
*The link to the blog has been removed to respect patient anonymity.
^ Keir usually posts at The 21st Floor, which has been offline following a complaint by the live blood analysis quack, Errol Denton. They came back online on 13th February and this post now also appears there.
Josephine Jones 
SS
You are either a liar or do not understand the word toxic, and have swallowed the Dr B line. The sodium levels begn elevated is a toxic effect. It is toxic. That is a fact. Unfortun\tely you say it isn’t without udnerstanding this.
On the idea that peole cannot say it doe nto work, true. However I can categorically state there is no evidence available that the ANP treatment has had an effect on cancer. Why? Well, Dr B refuses to publish any. From that position ther are 2 options.
1) Burzynski’s 35 years and 60+ trials has nto provided any, so he hasn’t published.
2) The trials did proove it worked, but he chooses not to publish and thereby stop the treatment from becoming available to more people.
The idea that he is prevented from publishing is frankly bollocks. He could publish in a low impact journal, and his studies woudl eb taken up. Of course a review of his work in the cancer letters showed that his studies are poorly designed, and uninterpretable. i.e. incapable of providing evidecne that it works due to the design of the trial. You woudl have thought in 35 years he woud have learnt how to do a trial that could show whether it worked or not, and that he woudl do so if he was actually tryignto prove it worked rather than just trying to keep flogging it to vulnerable people.
I will not quit commenting on Dr B, it all boils down to his refusla to actually attemtp to show it works whilst continuing to sel it to vulnerable people who are mostly nearing the end of their lives. If you think it ok to do so whilst making little or no attempt to prove it actually works then you are endorsing snake oil sales.
PS, you absolutely DO NOT know it works, despite knowing people who have taken it. You have NO evidence whatsoever that the ANP’s themselves did anything at all, please stop pretending that knowing someone who survived cancer whilst having ANP’s means the ANP’s did anything. No one has demonstrated a causal effect, that is why trials are structured as they are. Just believing Dr B or any of the patients in their unproven claims is a postition of willful ignorance, pushing people towards givign Dr B a small fortune for a completely unproven therapy is not a nice thing to do.
PS regarding the insurance comapny paying for it, as far as I can tell you are lying, They do not pay for ANP’s. There is no case on the interne of this happening that i can find at all, you appear to be confused with insurance companies payign for conventioanl treatments and pharma companies giving relief on their medicicne costs. I do not name patients, or contact them, and I most certainly have NEVER harassed anyone. PLease stop making such allegations as reasons to notprovide your evidence to me, using the word “you”.
Ok so are you saying the people that it worked for weren’t healed by the medicine but rather miracles. When they have done no other type of treatment. Talked to a person today who’s insurance is paying. Also they keep close watch on blood levels. They get blood draws several times a week. They have had to be taken off the medicine for illness do to illnesses like colds or flu more than dangerous sodium levels. If you keep track of your health while on the medicine, like you are suppose to, you can greatly help prevent any major side effects.
As I have said there are many other medicines and illnesses you must keep track of these things the same way. When blood levels are messes up you simply unhook the pump. When levels are back to normal start again. From what I am understanding it takes only a day or two.
You keep saying the same thing over and over. You never have any different info to back up your points. I state a different fact and you can only come up with the same rebuttle every time.
You keep proving you have never been around the medicine or a patient. Where I can explain everything about the process, the care needed and equipment used.
And I do know the skeptic group attacks patient. I have seen it. Telling the family this doctor is going to kill them. Really nice and shows how evil some people can be. The reason I keep saying I will not give names or links is because I have been asked to “prove it”. I will only show my proof by replying with educated answers. When I repeat myself I state “as I said before”. You could get away with copying and pasting you response every time.
When I say “you” I am referring to all that are commenting on here. I am using its as a general term. If I was pointing out just one person I would reply to the individual comment. I am not trying to inform one certain person the info they need but all in general.
Please respond with better info. We all know you are worried that you can’t read his patients study info. We also know you are freaked out about sodium levels. I also know that you have no idea how patients are billed and how insurance works.
@SS – based on the patient chronologies detailed at:
http://theotherburzynskipatientgroup.wordpress.com/
It directly contradicts your claims about patient billing & insurance. In fact, I can find no patient information or case stories that say anything about ANPs (or other Dr. B treatments) being covered by insurance.
Also, based on the track record we’ve seen thus far, it does seem that these patients are being given incorrect information regarding the status of their disease by the individuals at the clinic (we also seen numerous instances were Dr. B seems to be intimately involved in patient care and recommendations, even though he claimed to be completely aloof in his case with the Texas Medical Board).
A lot of us here have down quite a bit of research into Dr. B’s clinic and the unfavorable outcomes that seem to typify the vast majority of those patients that utilize his “treatments.”
You are the one that seems to not understand how medical research is performed today & how Dr. B has circumvented or ignored all of the basic tenants. Again, he could put all of this controversy to rest if he would just release his data (not patient records on individuals, but the actual results of all of those clinical trials he’s been running for the past 35 years).
Don’t you find it just a little odd that Dr. B, above all other ethical researchers out there, refuses to publish anything amounting to results from this trials? How can you possibly claim that he is curing people when he won’t put anything in the public domain for scrutiny.
If a drug company like Merck or Pfizer did the same thing, would you find that acceptable? What he is doing is saying, “Trust me, this works.” But he refuses to tell you why, how or show any proof that it does….again, you don’t find this odd?
And maybe, just maybe, we’re freaked out by sodium levels because patients have died…..again, you don’t see a problem with that?
Again you repeat yourself. So just refer to my prior post so I don’t have to do the same.
Kinda odd that you send me to “the other” crap link again. I find my info in different ways than you. Not a biased blog that is also from WordPress.
People go to this clinic after they have been diagnosed by usually a local doctor. Most people get many opinions on their treatment options. One i have Spoke to talked to 4 doctors that specialized in the field. You do not go to Burzynski and say “something is wrong, what is it and fix me”.
If you knew anything you would know that usually a patient has at least 3 other doctors spread around the country read the MRI results. Patients don’t get info from only the clinic. All doctors involved, yes even those at St Jude look over the patients charts and results of tests. Patients aren’t even allowed to leave the clinic till it is confirmed their doctor at home will help with care. Usually it is very easy for your local doctors to want to be apart of your recovery from the problem weather it be cancer or non cancerous tumors.
Of course you won’t find positive info you need on your link. You will also not get a chicken recipe on PETA’s site.
We all know you want documentation of it helping people. Keep reading your one link and live by that. You remind me of a commercial where the lady meets a man in the Internet and believes he is a French model.
Yes I see the problem of someone not staying on top of their care and getting their blood levels checked. One simple test will tell you all sorts of answers on what is going on with your body. That is why I suggest you tell people that you are concerned for on the treatment to please keep a close eye on the blood levels. It is sooooo easy to fix if done right.
You want his data.
You want his data.
You want his data.
You want his data.
You want his data.
You want to scrutinize him.
(That should help with your next 5 posts and I made it a short simple statement because I KNOW YOUR COMPLAINT)
I have told you many times how he can claim that it works. Please go meet someone in person who is on the treatment. You may change your mind.
Which unbiased sources do you use for information about Burzynski? I use Cancer Research UK, the American Cancer Society, MSKCC, the Mayo Clinic, FDA and the like. They have a good record of dispassionate analysis.
These reliable unbiased sources don’t seem to support your interpretation. In act, your interpretation seems rather closer to that found on manifestly biased sites. The last patient I had any interaction with, her parents were told the tumour was dying, but actually it was growing aggressively and had outstripped its blood supply. Unfortunately the little girl died.
There is no doubt that Burzynski makes misleading claims for ANPs. There is also no doubt that he has been using the figleaf of clinical trials to do an end-run around lack of approval, and he has been doing this for a long time. His IRB acts in the best interests of the business, not the patients. These things do not necessarily mean that ANPs don’t have any effect, but they are big red flags that any ethical doctor and competent research scientist would address as a matter of urgency.
Here are the independent impartial links for you:
http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/what-is-antineoplaston-therapy
http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/
http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/antineoplaston-therapy
http://www.mskcc.org/cancer-care/herb/antineoplastons (also has the Mayo results)
Click to access UCM326631.pdf
SS
Yes you keep replying weith absolutely no evidence what soever that the ANP’s have had a positive effect. I coudl not care less in this discussion what equipment is used, that has no bearing on effectiveness, it is a diversion. I could not care less in this dicussion about whether people stop treatrments for a while (although nice blaming patients/carers for not following complicated instructions, it is apparently thier fault if the levels rise to high levels rather than being the toxicity of the medicuation, yes that’s right IT IS TOXIC, despite you repeatedly saying it isn’t). that does not show effectiveness. NOTHING you have done has demostrated effectiveness, and ALL of what you have written since teh start is a distraction from that. You simply have nothing ot offer, and keep repeating the nothing that you have, and saying it shows you are right and everyone else is wron. You claim to be trying to inform everyone, well, you have no actual information pertinent to the efficacy of this treatment, but post other information (technically that woudl make it disinformation).
SO do you actually have ANY information that relates directly to whether or not the ANP’s themselves have had any effect on cancer……if you do it woudl be amazing, because despite selling this to vulnerable people Dr B has not provided ANY. THAT is the crux of the matter, and one you continually obfuscate.
Stating it is not toxic is not a distraction. Just as you saying it is. That could also be described as a distraction. I have actually got the medicine in my hand and didn’t have to call poison control. When people are trying to back up their argument with information that is incorrect is just more proof that you are wrong. Acting like you know everything then describing treatment processes wrong is a sign to me how much you really know. i have seen it works and is working. Just because I describe things different than you think they are doesn’t make me distracting you. Guess if you are easily distracted…. Stoping meds is not complicated at all. Sorry you would have difficulty not being on a medicine for a day.
I am completely right. Until you have been around patients you know nothing but what you have read on your wacky link. Never said it is a patients fault if their bold levels are off, just simply that they are suppose to keep close track of the levels. And requested since you are so concerned, tell patients to keep close track of their levels. Not a hard task. My spouse is on meds for a totally different type of illness and he must keep track of his levels. When the doctors realized the meds were making an ulcer. Guess what he stopped the medicine and started a different. Same thing you can do on this medicine. Just because you put a few big words in your statement doesn’t make yours anymore true than mine.
The link you try to get me to believe has the heading staring with “The Other”. Does not say “All patients”. Why would that be? I will tell you cause just like all meds some work for certain people some don’t.
If you are saying you are trying to inform everyone with your “I”ve heard” statements you are wrong. When have you been around the medicine? When have you went to a patients home to talk with them and help them with whatever they need? When have you actually tried to support anyone with any major medical problem? I have seen emails sent to patients from one of your skeptics, Bob Blaskiewicz. Never would I want to be associated with him. He totally makes your skeptic group look like a bunch of bullies. I don’t know if he was turned down from treatment in some way or what his problem is but he is a terrible person. I usually don’t want to put people’s names out there but if he is going to, I guess I could call it, cyber bully patients he wants to be known. So there is another warning for patients, this man will attack you. It is almost a definite thing that is going to happen.
And as you know I am not a peer of this doctor. He has no need to disclose anything to me. I can tell you are not a doctor either so why would he care to tell you anything either. I just see proof with my own eyes, in person. Guess what I have even hugged patients, gave them a kiss on the cheek and made sure they know if there is anything they ever need I will do whatever I can to help. As I have suggested before you should try to support people that have any type of illness. I know it will be a stretch for you but it will make you feel really good. I can tell that someone not believing your theories really upsets several of you. Try to make yourself feel good with being positive. Yes when I started on this blog I was pretty mad. I said stupid sorry about that. As I have said I just feel it was very wrong for a group of people to attack a baby.
I can tell you all are getting upset during the conversation. I did start on here pretty mad but more recently have read posts where I have personally been called names on here. As you can see it doesnt bother me, heck i was owning the names and putting them in my title name. Some of these post I read I can just hear the person screaming and can see how frustrated somone with a difference of opinion upsets you all. Why so hostile if I am just an idiot that knows nothing?. I believe I know. I make valid points. If not you wouldn’t try to tell me how wrong I am with the same argument every time. I am personally glad I started on here, I made me reach out to patients more and them letting me spend time with them is very sweet.
If you have any further questions about the care or equipment I will be happy to answer. If you have a different argument than people on your link it didn’t work for or sodium levels can be messed up it would be nice to discuss different points. Oh and I am sorry that you can’t read the doctors work progress. Meet someone and learn that way. If you just want to support people that have lost family members there are way more people that would like it than just burzynski patients. Hopefully you already do that. If so please send me to the links of those sites because I want to support people too.
Your reference to “poison control” is fallacious. I can buy mercury, isopropanol, lead and numerous other toxic substances without informing anyone. Burzynski’s ANPs are indeed toxic. They have very high levels of sodium, and hypernatremia is a well known complication experienced by a very high proportion of patients, 65% in one study discussed by the FDA – and this is probably compounded by the fact that Burzynski has no idea how much water is needed to offset this effect, according to the evidence we have.
As with everything in science, the burden of evidence lies with Burzynski to prove that his product is safe and effective, through the accepted mechanism of peer-reviewed publication in reliable journals, followed by independent replication. That is the only thing which will ever settle the issue. Do please ask him to pull his finger out – 61 trials registered is extraordinary for a single researcher, zero published is, I believe, unprecedented.
Never said you can’t buy poison. Again another example of not reading what is wrote. Again I know the sodium problem you are concerned with and have explained numerous times how to manage it. I am also aware that a patient I have recently talked to does not have the main concern with sodium levels in the blood counts but something else. Again all meds effect people different. Different people have different situations. But I am sure you realize that.
Again, I will tell you I do not talk to the doctor so I will not have the opportunity to tell him your request. I still am pretty sure he could care less any of my or your opinions. He is far to busy.
Also you are another person who has not told your relationship with know patients. Just keep repeating what all your other buddies have said. I would like you to personally meet a patient or two. This whole blog has gotten me more involved with some and I am glad of that. I like having proof with my own eyes. I have not become more negative but more involved in helping people.
I read what you wrote, I pointed out the first of your fallacies. The idea that ANPs are “non-toxic” relies on using a definition of toxic specifically crafted to exclude the toxic effects of ANPS.
I am not going to tell you about my relationship with patients and families because using patients as a human shield is despicable, as well as a classic bit of emotive bullshit.
What matters is good quality evidence published in reliable sources. You know, like those 61 trials, if Burzynski had actually published any of them. Did the consent forms say “we have no intention of publishing this trial”?
A note about theotherburzynskipatientgroup.wordpress.com. The reason that it is called the “other” is because the original patient group is designed in a way that is inherently misleading. Basically no matter how many people go to the clinic, untold thousands, they draw a circle around only a few dozen survivors. There could be (in theory, not fact) millions of people for whom the treatment failed, but you’d never know that by looking at that site. It’s what’s called the Texas Sharpshooter fallacy, drawing your bullseye around the bullet holes (in this cases, apparent “successes”). So, I wanted to give a fuller picture of the patients who go to the clinic. We have about 30 patient stories–in their own words– up right now and hundreds more ready to be written up. We can’t have patients write, obviously, because they are almost all dead, so we need editors to let their voices be heard. Also, we can put these stories in context. So, when a patient is told that worsening symptoms is a sign that they are getting better, we can let them know what that line has meant to other patients in the past (it’s not good) and that he has been giving that line for decades, we let readers decide whether or not he is knows what he is doing. (See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, or Chase S. where patients report receiving this advice.) Also, we make sure to link back to patient pages so you can check our sources and read the stories without commentary. So we’re trying to be as forthcoming and transparent as possible about what we’re saying and where we are finding it.
RJB
Problem with this I have seen way too many times where people’s words get twisted to say whatever you want. It has happened to me several times in this one individual blog. So know that you have pointed out that your group actually writes the blog yourselves makes me even more “skeptical” of your intent. I have seen where this group has upset people very much by changing the content. Several on here told me I watched too many YouTube videos about this when I haven’t seen one. So know I have watched some and have seen the actual patient or their family complain how their info was misinterpreted. Maybe you should contact them and tell them how you are right about their lives.
So you do know that saying patients can’t write this because they are nearly dead is very fishy. You can guarantee if anyone was to publish anything about my family, my family would be the author. Never a story teller. I would want the truth. The person who runs this blog said I was saying she was the only person commenting on here. Apparently had not read what I wrote or something I think I will keep to myself.
I have said before the patient is monitored by their own personal doctors. Patients do not run across the country to the clinic to see the doctor every time something goes wrong. They go to their local doctors. I guess because the people I have talked to have several different doctors watching over them helps out a great deal. I have suggested if people are terminally ill they get many opinions and keep close track of their care.
If you are the man that is threatening people with death shame on you. I am only assuming because i mention a Bob and all of the sudden a new person jumps in the conversation Named bob .You should never harass people the way you do. These people are going through difficult times and can use support. Maybe you should change your delivery methods because you do know the patients are all aware of your crudeness.
For like the 20th time I will say not all meds work for everyone. If this medicine isn’t working for someone they simply stop and try something different. You have even harassed people that are getting good results. It shouldn’t take long to known if it works. I would say no more than 6 months into treatment. That would be like 2 MRIs. nobody i have talked to have ever heard of someone saying “since you are getting sicker thAt means its working”. Anyone that would even believe that needs to think a little and talk to a different doctor because their doctor obviously does not have time for them. Must be an example of people that are not able to get all the care they need while being treated. Sorry it didn’t apparently work for someone you know. If this person had tried something different would you harass all people that try the different method?
Projection, much?
SarahSmith,
Can you share with us how you’re associated with the Burzynski Clinic?
Ha! I was told I would be asked that. I have to call the person that told me that right now. Just keeps proving to me the tactics people will use to try to discredit someone. If you would have read you would have seen I make 0 dollars a year. So i am totally free to give support where it is needed. I was lucky to marry a hard worker. My only true association with anyone is with patients of the clinic that I know personally. Should have read that too.
It’s a fair question, isn’t it? You appear to be a strong advocate for the Burzynski Clinic, with personal relationships with multiple patients there, and you claim to have detailed knowledge of the treatment and clinic. I think it’s reasonable for us to wonder exactly how you’re associated and what kind of support you give. You defend Burzynski so vigorously, but can’t be bothered to tell us why you’re such an advocate? Why all the secrecy?
Also, in the spirit of being honest about our intents and motives, I’m a cancer patient myself, so I have a huge personal reason for learning about cancer treatments.
The only secret I am keeping is people’s names. Glad someone is realizing how much I know about the treatments. Proves I am looking like I am making more sence to you. I ask if anyone has been around patients and everyone ignores my question or says they don’t have to tell. Again proving my points. I support the patients I know who are going through this treatment just as I do people with other illnesses that need support. This site is just proving how wrong people really think the treatment works. My support for this clinic has been explained several times by me since Feb 8th. I have more to say than the same stuff over and over. Please take time to help anyone you can in your area going through any type of terrible illness. I am ashamed there are people in the world who would treat people and threaten people the way I have heard and seen this group do. I will always back up someone who I feel is attacked for no other reason but a hate group has pointed them out. I am seeing this work. This whole page was started about a baby that had no other options.
I am glad that you have concurred your cancer and hope it never ever comes back. But I challenge you to think about how you would feel if a group of people were attacking you for whatever option you chose to use.
All I am trying to get people to do is be postive for seriously ill patients. Saying he won’t show records or blood levels get messed up is no reason to harass innocent families who are going through one of the most difficult times in their life. I am sure you really appreciated all the positive support you received. Make these blogs saying your opinions, it is a free country. Just stop attacking patients personally. Unlike your group believes these patients know what all the risks are and what to watch for.
@SS – where have we here attacked patients? Please show the post or comment that does so…..because I’m attacking the doctor for not showing that his treatment is actually effective or going through the regulatory process to PROVE that it is safe.
And lastly, I’m attacking the doctor because until he can actually prove that his treatment works, he’s giving people false hope and charging hundreds of thousands of dollars (and we’ve got a growing list of his patients that are now dead). That’s what I’m about – I feel for his patients, because they deserve better.
Skeptic group people have done the attacking. If you are part of the group you are part of the bad behavior.
That is a reversal of the facts. Skeptics have asked for evidence. The response has been to attack critics. Needless to say, some of the critics have replied in kind, but the root of the problem is, and always has been, the behaviour of the Burzynski clinic and its shills. They are not interested in civilised debate, so they are not in much of a position to complain when the debate they insist on having anyway, is not always entirely civilised.
Please stop repeating the claim that skeptics have been attacking patients or their families, unless you can provide evidence that this is the case.
As I mentioned, I know people who have been treated and cured by this doctor, in the past and the many currently on the treatment doing very well! Everyone is welcome to their own opinion, it’s America! But for all the full time “haters” (who are probably paid to raise suspicions against Dr. Burzysnki) trying to get the FDA to suspend his work or close his clinic….has it crossed your mind what will happen to those who are doing well and their cancer is shrinking or not spreading because of this treatment? Their lifesaving treatment will be stopped and delayed because of your nonsense. Sometimes patients have to stop treatment briefly for various reasons and often their tumors start to grow again. This doctor and his cure may not work for everyone, but there are many variants of cancer, and for some, this absolutely is saving their lives. What about them? If you want to put your effort to good use, urge the FDA to monitor our cosmetic and food industry…..now that is where companies are making BILLIONS in profit while putting known carcinogens in “beauty” products. Many of these “ingredients” are banned in Europe, but our lovely FDA does not regulate them. So many other things and causes you could spend your time on…
Sarah, I don’t see where you’ve mentioned your role, other than “supporting patients.”
In any case, I don’t think anyone is “attacking” patients, but certainly I’m not! Dr. Burzynski and his “treatment” is the target of our frustration, not his patients. He’s had more than enough time to show whether his treatment works, and yet he still refuses to do so. Why is that?
Being “positive for seriously ill people” is well and good, but it’s not a substitute for legitimate cancer treatment.
OMG. I said I don’t have a role. Only supporting people. Please READ stuff. When your skeptic group threatens patients and their families it is attacking and harassing. Tell you group to leave them alone and only use blog crap like this. You complaining about treatments not working helps nobody in any way. Go to people in person and show support. That is what I do.
This is just to warn you that if you continue to repeat the same points and to make false claims against skeptics (or indeed anyone), I will prevent you from making further comments.
If Burzynski’s treatment is all it’s claimed to be, has the thought crossed your mind that the patients who are doing well could continue to have the treatment and lots more patients could benefit as well? Plus it would likely be covered under insurance, so families may not be bankrupted in the process of treatment? Plus Dr. Burzynski would be rich and famous beyond belief! What’s to lose by publishing the results?
SS and/or WithMyOwnEyes, where’d you go?
Tried to wait for someone make a different post than repeating the same thing the other 4 people keep saying.
Truly not interested in debating further about this Dr. If you have cancer or your child has cancer, and you do not want to go to this doctor, then just don’t go. For those that I know personally……they are eternally grateful for the option because it saved their child’s life. Same thing for current patients who are responding very well. NCI lists clincial results. I really hope all the drama that groups like this are stirring up does not interrupt care for his current patients.
Does NCI list results of Burzynski’s clinical trials? Actually, I *do* have cancer, so my life could well depend on the treatment I choose, so I’d love to see evidence that somebody, ANYbody (!) has a new, unique, safe, and efficacious cancer treatment! It’s not a debate I’m looking for. Just publication of trial outcomes. Why is that so difficult? I really hope all the pre-release advertisement drama that the Burzynski shills are stirring up does not endanger any more cancer patients, who deserve to know the truth about their treatment options.
Meet people on the treatment in person. That is how I see with my own eyes.
I contacted a patent in person (oor rather, her parents); they were cruelly misledby Slippery Stan. Fortunately, Orac had some sound advice and they were able to get competent diagnostic information. Sadly this did not leave them long to prepare for the death of their cherished little girl but they were at least in possession of the full facts about the progress of her disease, rather than the deception they received from Burzynski.
@Curious – SS / Sarah/ Whatever she wants to call herself now, reminds me of people that claim that faith healing works, because they’ve seen it with their own eyes….despite the fact that no actual evidence exists that it actually works or that it is has never been tested or they continue to make the claims even after it has been proven that the people “healed” weren’t actually sick or didn’t actually get better….
See, SS, over the past hundred years or so, we’ve come to realize that you just can’t take things on “faith” you should really provide actual evidence that something works. It is quite possible that there have been patients that have responded to ANPs at Dr. B’s clinic – but we’ll never know, because unlike every other Cancer Research institution, which happily publish both positive and negative results of clinical trials (that’s where we learn what works and what doesn’t, so positive treatments can be utilized by oncologists across the globe to treat tens of thousands of patients or more), Burnzynski has patently refused to publish any of his results – either positive or negative (besides Youtube videos and online testimonials).
And you are worried that the FDA is going to shut Stan down? Well, actually it is his own fault – any patients that are “forced to stop treatment” because Stan is shut down (and currently, it looks like ANPs are off the table anyway for any new patients), can blame the clinic itself for not providing any real evidence to the outside world, that the hundreds of thousands of dollars they routinely charge patients, is for a treatment that has any evidence that it actually works.
It is the FDA’s job to make sure that the medicines that we take are actually safe and effective – if Stan had actually proven that his work, we wouldn’t be having this conversation and we’d be ecstatic that a new and revolutionary Cancer treatment had been found. Instead, he’s used loopholes, opened up numerous clinical trials (and if you feel he doesn’t need to publish, then why open up all those trials – 70+ at last count, if he never intended to publish his results – could he be using them as a loophole to continue to charge patients without having to prove his treatment works?), and relied on people like you to continue to champion his cause, without really having to do much of anything at all.
And asking if you worked at the clinic – well, I believe you’ve accused opponents of Dr. B to be paid “Pharma Shills” or the like, so if you can’t turn that around and look at your own conflicts (because of your emotional attachment to the clinic – you don’t seem to be able to look at the other side of the issue or consider legitimate questions about the operations there, treatment effectiveness or the various red flags that exist that don’t happen at legitimate medical facilities).
All anyone wants is for these Cancer patients to actually have a chance – to be provided with medical care and treatments that are safe, effective, and done at a price that doesn’t bankrupt the families – unfortunately, Stan has not given us any reason in the world to think that his “revolutionary” treatment is any of those things. It seems like “emotional” support is the only thing these patients receive – emotional support to continue their treatments through Dr. B – regardless of the outcomes, so the cash keeps flowing, all the way to the inevitable end.
It’s what ever you want to call me. Remember there was also moron and idiot.
Thanks for putting words in my mouth again. Anyone looking into this treatment please read what I have actually wrote not what that say I feel or said because it is usually changed to fit what these people want to argue about.
Never even heard of the word pharma shills. Sorry wrong person or just your putting words in my mouth again. See the treatment working and seen it has worked on others.
People don’t go bankrupt. So the initial visit is 30000 I know of other doctors that charge 200000 up front for other forms of cancer treatments. Insurance is paying. That is what it is for.
I am not concerned your group will shut him down. Again like me we are nobodies in the medical field. Just people that should try to help people with whatever decision they make. Sorry you don’t want people to be able to make their own decision. As said before nobody must use this clinic. You choose what you want. I am saying you cannot post on here anymore. Are you going to listen. NO. Because you can do whatever you want and I am not going to attack you for actually posting on here.
@WithMyOwnEyes: The fallacy in your argument is obvious. You are working on the assumption that the observed results are due to ANPs, not to random variations or the chemo that Burzynski also uses. In order to justify the substantial additional costs, let alone the ridiculous hyperbole with which ANPs are promoted, there must be proper independently verified evidence of this differential effect.
That means Burzynski has to publish full results from his trials. 61 trials by a single researcher in a single area is extremely unusual. 61 trials with not a single published result is, I believe, unprecedented.
There are many ways that people, including doctors, can fool themselves into thinking something works even though it doesn’t. You have only to look at the continued popularity of homeopathy and the hysterical disbelief which the scientific consensus provokes among its adherents.
Cherry-picking single results from scattered places serves only to highlight the absence of what should be the core of Burzynski’s case, published results from his own clinical trials.
Can you point out a single accepted, legitimate therapy which has been brought to market via propaganda films, unpublished trials, strident shills, and against a backdrop of near-unanimous consensus that there is no credible evidence the treatment works? Do feel free to cite any such case, I am genuinely interested in finding out.
@ChapmanCentral – It has also been noted that the new Clinic PR Director is now claiming that the “Vast Majority” of patients treated at the clinic aren’t part of the clinical trials….if this is the case, then those patients could not be treated with ANPs – since the FDA forbid the use of ANPs outside of the clinical trials…..so what the hell has Stan been treating the “Vast Majority” of his patients with?
I note that supporters keep saying the “trials” have come to an end. Does this mean Dr B will be publishing data for ALL of the trials, or cherry picking?
I’ve been away from home and have been finding it very difficult to keep up with these comments.
There are, however, a few points I’d like to make:
Nobody is “attacking patients”, “attacking a baby” or harrassing patients or parents. Not me, not Bob, not Keir (who wrote the post above). Nobody. The decision to take down the link to the parents’ post was made jointly by Keir and myself to protect patient anonymity and was not as a result of a complaint from anyone.
Keir’s post does not concern decisions made by patients or parents to go to the Burzynski Clinic. At the risk of reiterating the whole post, it is reporting the news that (according to a patient blog) it seems that the Clinic are undergoing an FDA audit and are being prevented from taking on new patients (for ANP treatment). The patient blog suggested that the reason for this was that a child went into a coma and had fatal sodium levels. As Keir points out, hypernatraemia is a well known and well established side effect of ANP treatment (which was reported by the FDA decades ago). It is worrying that this seems to be being played down by Burzynski (you just need to make sure you drink plenty of water seems to be the advice given).
This treatment has been used for decades on thousands of patients, many of whom were treated as part of FDA approved clinical trials. There is no reliable evidence that it is safe or effective. If someone got better while they were on the treatment, this does not mean they got better *because* of the treatment. The dearth of published evidence would suggest they did not.
I have 3 emails that have been forwarded to me that “Bob” was very cruel to patients. Horrible. I could prove it by posting his email address on here but i wont stoop to that level. I was able find what I think was the blog this whole post started from and it was concerning a baby. To me if you post any type of info concerning a child you should make sure you no body can find ways to see the info. I can see if you wanted to attack an adult. They can fight back but a baby? How stressed this family has to be and I hope they never see this.
Again how are we suppose to believe this patient was actually a patient and not one of the crazy sites made up? Even if this was a patients blog how are we to be sure where they got the info. And we are suppose to believe the person making these statements has all the correct info. I doubt the clinic would call all patients and update them with all other patients info. If that is the only place you can find the info maybe it is untrue.
I have also seen someone comment on here a patients name that happens to be a baby. If that family had not been attacked yet someone just opened the door for that and even told people where to find pics. (That would of been a few post I wouldn’t let be posted.)
Watching blood levels closely is also “advice”. All patients get all the info before being treated. I am communicating with some patients telling them what is said on here that the clinic supposedly doesn’t inform patients of and they already know. It is all part of what they went over before they even started the treatments. How can a group of people that have never been thru the treatment tell people the process? They guy that says he writes that “the other” group page has changed my words for his benefit so many times I would never believe anything thing he wrote. Especially concerning medical care.
Posting someone’s email address would of course prove nothing. Also, if the address is not already public then it would be wrong of you to make it so and your comment would therefore be redacted or deleted.
May I also warn you that making false statements about someone in order to discredit them is potentially libellous, and since I am publishing your comments, I could be held responsible.
I’m leaving your comment unedited for the time being as I think it unlikely anyone would take you seriously – but I warn you that I may have to delete or edit it (or any similar comments) in future.
If you are as close to patients and the clinic as you are implying then you probably know that the patient blog is genuine. If anyone doubts this they are welcome to contact me privately for further details.
@SS – since we already know where to find Bob, why don’t you post the emails you say are “attacking patients?”
Also, if you clicked on the links provided at “The Other Burzinski Patient Group” you would see exactly where the information is coming from, in the patient’s or their families on words.
If you won’t take primary sources, then how are we to believe anything that is posted by Ole Stan either?
Again, I ask you why Dr. Burzynski is allowed to operate differently than any other legitimate Cancer Researcher in the world?
Once again I don’t want to post the emails because the children’s names are used in the email. If you feel it is okay for people to know and direct people to your children pleas post the names of your children, nieces nephews and and other minors. Also please let us know and give us links where to find pics of them.
Perhaps you should be contacting the parents who run the patient blogs bigging up Slippery Stan’s Snake-Oil. It would not be necessary to promote the other side of the story if Slippery Stan gave the full picture himself.
He doesn’t.
When have I ever attacked children? I really want to know.
Sorry mister but I have three emails. Like I said leave children out of it and quit threatening families that the doctor will kill the children. People are using the web for support and to keep family and friends updated and you take advantage of that. They all know you will find a way to get at them. Your threats to the family mean nothing. They are not going to stop doing something that is working because you don’t believe. I will tell you also, if you feel it is fine to contact people about children please let us know the children in your life’s names, where we can find them and how to get ahold of them.
I am so going to sue you, JJ! :LOL!
I go through life expecting someone to threaten to sue me at any moment, but I honestly never expected it from you!
I do think it’s important though to remind people that I have to draw a line somewhere. I also think some people need to bear in mind that certain online behaviour is unacceptable and could have consequences.
Reminds me of Mr. Treason on Wikipedia: “I will sue you in a court of law in Trenton, New Jersey”.
Like I have said as long as you keep the stuff on your blogs then whatever , but I really think allowing links to minors and listing names is terrible. Just opens up more people to harass these families and believe me they already know of your group and how you feel.
You will notice that I never list names. I do everything that I can to scrub names from my posts. My thought is that I don’t want someone who enters a patient’s name into Google will end up with my page in the results. That’s deliberate. Now, I source things. The links are real links so you can see I am not making things up, and anything put up on the web is there because the families or patient already put them there. So show me where I threatened people, or shut up.
It’s always the one you don’t see coming. 🙂
I think that recently a lot of blogs are realizing that they are responsible for the tone and timbre of their comments. It will only raise the level of discourse.
When you tell people they will die I consider that a threat.
@SS – you seemed to have learned quite a bit from your time at Dr. B’s clinic….make a bunch of unsupported accusations & or assertions of facts without evidence & expect us to just believe you?
The families themselves are putting their personal information out for the whole world to see, some would say encouraged by the Clinic as a means of advertising their services without breaking the FDA ban on false marketing of ANPs…..again, if you have “proof” there are plenty of ways to redact personal information (even Adobe will allow you to do it) to give some sort of credence to your claims.
Again, you’ve learned your lessons from Dr. B very well – make a bunch of allegations (or claims of success) without providing a single shred of proof….Dr. B would be very proud of how well you’ve swallowed his story, hook, line and sinker – he should be paying you.
Sorry I have said numerous times I haven’t been to the clinic ever. But I am very honored that you are pointing out the fact that I do know a lot more than you thought about treatments and patients.
@Ss – Nobody is allowing links to minors. Nobody is listing names. Nobody is harrassing or threatening families. I now notice that in an earlier statement, you claimed Bob has threatened people with death. That is untrue and utterly unacceptable. Your more recent comment claims that Bob had threatened that the doctor would kill children. That would not be a threat from Bob – he is not responsible for Dr Burzynski’s actions.
It would be perfectly true to say that antineoplastons carry side effects that could be fatal and, as the post above mentions, there is genuine concern that the clinic are not making patients adequately aware of risk. The fault here lies with the Burzynski Clinic, not with those people who point out their failings.
I think I should also point out that asking us to list the names of our children and to explain where you can get hold of them is uncalled for, unacceptable and potentially intimidating.
Ok so if nobody has named names or posted links, what is it that you consider the post that marcstephensisinsane wrote on Feb 12th at 4:38 and another at 4:42? You did respond to them. I was saying put your child’s name on here to prove a point and you helped me with that. I am sure these people didn’t approve of mention of their child’s name on here or a link to find pics just as you don’t want your child’s name on here. There is just certain lines that shouldn’t be crossed especially when it comes to children. Links like that give the bob guy access to info that he uses to contact families. Yes these families may have blogs that are on the web and the world can see, but it can be very hard to find these and most people do what they can to make these private.
As I have said before all meds have side effects. These patients don’t live at the clinic. I am not saying it is the patients fault if they become too ill. These people need support from as many people as possible just as anyone else going through illness. I do really like that if a person does become ill from the meds they just simply stop taking it and can either start again when better or if it is not working can move on to something different. No patients that I have talked to were forced to stay on the meds or told that them getting worse would be a sign of getting better.
I have met patients personally. Not by working at the clinic or even ever being there. I will help them in anyway just as I do for people with other illnesses whatever treatments they choose.
@SS – yes, none of the patients told you that, because as we have seen, the patients that were told they were getting better, when in fact they were not, are dead….the dead don’t talk.
Let’s see what the result of the FDA audit is – hopefully we will finally get some real evidence as to whether or not this “treatment” actually works.
Since these are alive and happy I will tell them you told them that. For one of them the MRI is first read at local hospital and sent to burzynski, st Jude, and St. Louis. Since all come back with same positive decrease results they are going to stick with it. I believe I have said this like 10 times. You don’t just work with burzynski . Your personal doctor is a major person involved in your care. There are actually 4 doctors spread around the country helping with the health of one patient. I have no idea where you get that burzynski is the only doctor giving info. I really wish you could meet a current patient and be able to understand how everything works. Now of course if you get all your info from people that didn’t survive you are only getting an upset families point of view you are missing a lot of info and getting a lot of bad talk. Sorry I am making you so mad. It’s just that I look at both sides. People are writing wrong info on this blog about treatment and i just want to help educate. Again not all meds work for everyone.
Anyone interested in this treatment please read this entire blog. Shows many perfect examples of who to watch for. I have explained several times a little about the treatment. There are patients using this medicine in my town and are seeing good results. Not “getting worse means getting better” as these people would like you to think. Never have they told me they have talked to a real patient in person. Meet some people for yourself before you start. You will see they are not laying in a bed rotting away. They are up walking around, laughing, and enjoying life. There are negative sites for all forms of treatment. This is just one that happens to be against this type.
@SS – did you just blame the families for passing along information after their family members died? Certainly sounds like you did…..
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I am a family member of a toddler on Dr Burzynkis treatment. The child has been on the treatment for quit a while and we are having great success. The insurance company pays for all the supplies. St Jude has paid for all little surgeries that has been needed. None of the surgies had to be for something that was because life was in danger from the treatment, just some convince that anyone would need for having these types of illnesses. I wish I could thank in person the Dr and St Jude for doing everything they have for our sweet baby. I just donate money and participate in lots of St Jude fundraisers. The child sees several local doctors and they are all working together with each other and Dr Burzynki and St Jude. It is great to hear all the positive thoughts from the local specialist and see how amazed they are with this young child’s progress. So glad we found this miracle treatment and hope others are able to get approval to use this treatment.