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  • Health & Medicine

Hope or false hope?

by Kat Arney | Analysis

25 November 2011

27 comments 27 comments

New insight into how childhood brain tumours develop

Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all” Emily Dickinson

 

Note: we have edited this blog post to correct factual errors, and made changes to some of the language at the request of the family of a patient being treated at the Burzynski clinic. For transparency, these changes have been tracked.

We’ve recently seen an increasing number of stories in the media – such as this heartfelt piece in the Observer – describing how desperate cancer patients and their families are raising tens or even hundreds of thousands of pounds to go for treatment at the Burzynski Clinic in Texas, USA.

Many of us working here at Cancer Research UK have lost loved ones to this terrible disease (or, indeed, been through it themselves) and it’s what fuels our passion for the work that we do. So we have the very deepest sympathy with these families and understand the need for hope, however faint, in their darkest days.

Across the country, kind-hearted people – from local communities to big name celebrities – are understandably moved to raise money for these patients. But it is also important for them to know that the available scientific evidence does not support the clinic’s claims that their treatment (known as antineoplaston therapy) is effective against cancer. At the moment, Burzynski’s antineoplaston treatment has to be regarded as experimental and unproven. (Edited 3/12/11 KA)

And although we have no wish to extinguish the small flame of hope that these families carry, the current scientific evidence tells us truth is that the Burzynski Clinic’s treatment is not the miracle cure that the recent slick movie about the clinic would have you believe. (Edited KA 22/12/11)

There is nothing we want to see more than effective treatments for cancer, and to save families from going through the pain of losing a loved one to cancer. Some families may feel that a chance of a cure – however slim – is worth it, on the understanding that there are no guarantees. But we cannot stand silent while people are lured by promises based on an unproven therapy. (Edited 30/11/11 KA; Edited 5/12/11 KA)

What’s the evidence?

At the moment, there is very little solid scientific evidence to show that antineoplastons are effective at treating cancer, and virtually all the research in this area has been carried out by Burzynski and his team – a red flag to the scientific world (as we’ve discussed before).

To explain, scientists are not stupid – whether they work for independent organisations like a research charity or a pharmaceutical company – and they can spot a bandwagon rolling towards them from a great distance.  Once the evidence starts to fall into place about the potential effectiveness of a discovery, it’s guaranteed that the scientific community will start to pay attention and jump on.

The fact that no other labs have managed to replicate Burzynski’s apparent success with antineoplastons or are interested in developing the treatment raises questions. The fact that there has been little outside interest in developing the treatment, and that few others have managed to replicate his apparent clinical success, raises questions. (Edited 30/11/11 KA)

As a case in point, based on Burzynski’s claims about antineoplastons, the US government-funded National Cancer Institute (NCI) spent nearly a million dollars on an early-phase clinical trial of the treatment in the early 1990s. But the early results were not promising and the trial ended in disarray – a saga documented in this fascinating social science paper.

Although neither Burzynski nor the NCI is entirely blameless in the collapse of the trials, it is perplexing that since then thousands of patients have allegedly been treated with antineoplastons, yet there is not enough data to make a solid case for their effectiveness. And – more importantly – based on the evidence presented by Burzynski, the vast majority of the scientific and medical community remains unconvinced.

As well as the doubts around the effectiveness of antineoplaston treatment, the whole manner in which the clinic is offering treatment is unusual.

Antineoplaston therapy is not licensed as a cancer treatment by the US Food and Drug Administration (FDA), so the Burzynski Clinic is offering the treatment only as part of a clinical trial. However, patients are being asked to pay many tens of thousands of dollars for the privilege of being on the trial – a highly unusual situation in clinical research, and certainly not the norm for UK trials.

Furthermore, the scientific community expects the results of clinical trials to be published in the medical literature. As far as we can tell, Burzynski’s team have not published any results since 2006, which raises questions about exactly what kind of clinical trials they are running, and when we might expect to see the detailed analysis of their results.

There is no conspiracy

We’d like to add a more general note on alternative cancer treatments. As we’ve discussed before, Cancer Research UK is often accused of being part of some kind of “Big Pharma conspiracy” when we report the lack of evidence for the effectiveness of alternative cancer treatments.

These accusations are offensive to all of our scientists, doctors, nurses, fundraisers and supporters, many of whom have lost people to cancer and want nothing more than to see this terrible disease beaten.

The truth is that these alternative treatments have not been shown to cure cancer, and those who say they do must provide credible scientific evidence to support their claims.

Also, it is not true that certain alternative treatments are being ignored by the pharmaceutical industry for financial reasons. The issues around what pharma companies chose to invest in are complex. But it’s not the case that ‘unpatentable’ cancer drugs or treatments are suppressed by the pharmaceutical industry.

For example, the drug aspirin has been out of patent for many years, yet it is currently being investigated in clinical trials for preventing cancer – experts believe this humble drug could significantly cut cancer rates. Furthermore, cheap off-patent drugs including statins and beta-blockers are also being investigated by our researchers for their cancer-fighting potential.

In addition, there are ways that companies can patent pre-existing or reformulated compounds if they show genuine promise against cancer, so they can make them widely available to patients on a commercial scale. And Cancer Research UK also works to secure rights to investigate and market shelved drugs or drugs for rare cancers that could benefit patients – so-called ‘orphan’ drugs – such as fenretinide for childhood cancer. (Edited for accuracy 25/11/11 KA)

If any of the so-called ‘miracle’ cures for cancer showed genuine, reproducible benefits for patients, they would be jumped on by doctors and scientists who are desperate to find better ways to treat the hundreds of thousands of people who are diagnosed with cancer every year in the UK. The fact that they are not speaks volumes.

We believe that we will beat cancer through scientific research, and the progress we’ve made over the years stands as a testament to the effectiveness of this approach. Survival from cancer has doubled in recent decades, and more people are surviving than ever before. For example, more than three quarters of children now survive cancer when back in the 60s only a quarter would make it.

Yet we are all too aware that we still have a long way to go. Cancer still causes more untimely deaths than any other disease, and it’s understandable that people will cling to any hope look at any option, however slender, when faced with a terminal diagnosis (edited 04/01/12 HS).

But we would ask people to stop and carefully consider the benefits of pursuing unproven experimental treatments. treatments that do not appear to be effective at treating cancer, despite the hefty price tag. (Edited HS 0401/12)

Kat

 

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Image from Wikimedia Commons


    Comments

  • Henry Scowcroft
    10 January 2012

    Hi everyone,

    Regretfully we’ve decided to close comments on this thread. Please direct any future comments on this topic to the blog team at: [email protected]

    Thanks,

    Henry Scowcroft
    Cancer Research UK

  • Wyn
    8 January 2012

    30 minutes of research and some rational thinking would put this to bed.

    Until results are published and reviewed this is (at best) an experimental treatment.

    The clinic has had 30 years to collate data over dozens and dozens of trials – none of which have reported at phase 3.

    Even the case studies that are printed show the ue of standard oncology medicine (eg chemotherapy) along side the antineoplastons. How could we ever know what is actually working?

    The cost is obscene, the data weak and the spin dizzying.

    Hope is good, ambulance chasing is not.

    Shame on you Burzynski.

  • Callum J Hackett
    5 December 2011

    Michael, when you start to talk of conspiracy theories, you immediately lose credibility. Scientists, doctors, and researchers are not different from the rest of us – they care about people, and they go into their jobs, taking years longer than anyone else to master their profession, in order to help people. Even if there were a few bad eggs, there simply isn’t even a financial incentive to suppress information about ‘successful’ alternative treatments. We should be singing the praises of people like the volunteers and researchers at Cancer Research UK because they are saving lives. People who push alternative treatments very often cause death by convincing people to not have conventional (i.e. effective) treatment.

    Your argument also doesn’t rest on science and facts. Instead, you are convinced that treatments that sound nice ought to be the ones that work. Well that’s just not how medicine functions – if it did, then a lot of nice-sounding medieval treatments ought to work, and they don’t.

    Yes, compared to treatments and therapies a few decades and centuries from now, the way we often deal with cancer in the 21st century seems barbaric. But the fact remains that fewer and fewer people are dying from cancer, and that’s because they are successful treatments. They are proven to work. They’ve been through rigorous, randomised, double-blind, controlled and peer-reviewed trials – ‘alternative’ medicines have none of this because they are just money-making machines that take advantage of the misinformed and vulnerable.

    And, for reference, I have had three operations in the past year to combat a genetic cancer syndrome, so I’m educated on the issue too. For my particular type of illness, cutting out all the tumours is the only course of action that can be taken. In the future, there might be the option of gene therapy, but we don’t have that now, and I’m not going to go searching for alternative remedies simply because I don’t like the sound of the most effective current treatment. I am quite happy to put myself in the hands and expertise of experienced NHS doctors because they work with the scientific method. And, at the end of the day, no matter how romantic and poetic it is to think of alternatives, it is that same scientific method that has brought us countless medicines, vaccines, transport, technology, communications, and the computer you’re using to make false accusations against a well-meaning charity.

  • Michael Marten
    5 December 2011

    The vitriolic hate and suppressive rage of scientists religously defending their dogmatic fundamentalism never fails to amaze me.
    Especially when their paycheck is involved.

    You guys are a rabid unimpressive bunch who have watched tens of thousands die from injecting poisons and irradiating with deadly frequencies, hoping the persons immune system can recover and save the person and not let them die. And you scream that that is a cure? And slicing off bodyparts is a cure? And that’s 21st century?

    I personally will watch and hope that applying multiple therapies will cause healing of diseases, switching off mutagenic genes and re-installing the ultra-efficiency of the body’s immune system (I am a trained biochemist and food engineer who has studied “alternative” to mainstream sciences). My mother has had cancer twice, so don’t lay on me that I’m either uneducated or couldn’t imagine what it’s like to have someone close to you with cancer.

    I’ll be reading both sides of the story, looking for cures and seeing the money in everyones’ eyes…..

  • JLI
    4 December 2011

    @ Stacy

    I think it is easy to understand why all those testimonials sound convincing. That is what they are meant to. But we don’t have to look through all 100 testimonials to form an opinion if they are reliable or not. Three of these testimonials were used in a movie, which was made to promote this clinic. And furthermore the documents that allegedly back these testimonial up have been published. It is a fair assumption, that the reason those thee testimonials were presented in the movie was, that they were the most convincing and best documented examples. Please try and compare what these testimonials claim with what is explained here: http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

  • Callum J Hackett
    3 December 2011

    Stacy: “I just don’t get it. If the treatment is uneffective, then why are there so many Burzynski patients who have beaten all odds of so many terminal cancers?”

    Conversely, if the treatment *is* effective, then why are there so many well-qualified and well-respected scientists who say that the treatment is bunk?

    To understand the answers to these questions, you need to familiarise yourself with research and the informed opinions of professionals. Our intuitions as laymen often deceive us.

    Of course, if any one us of us does not have the requisite time or expertise to understand the scientific literature, then the most reasonable thing for to do is trust the conclusions of the academic community, and there is a consensus that Burzynski’s treatment doesn’t work.

    It’s counter-intuitive, but anecdotal examples – not matter how many – are not an example of good evidence.

  • Stacy
    3 December 2011

    ….yet there’s over 100 testimonials on the Burzynski patient group web page of people who have survived various cancers thanks to Dr. Burzynski. This includes a long list of terminal cancers, and if I’m not mistaken, DIPG as well. Are we to believe these are just lucky occurances?

    Laura’s positive tumour reduction is seemingly right on track with many of the Burzynki “trials”. My guess is it will continue to shrink and will be undetectable within a year- just as so many of his other successful trials have done.

    I just don’t get it. If the treatment is uneffective, then why are there so many Burzynski patients who have beaten all odds of so many terminal cancers?

    On the issue of cost, I believe that radiation, chemotherapy and all of the doctor’s visits (including MRI’s, PET’s, CAT’s, etc.) involved in traditional treatment would actually be much more expensive than Dr. Burzynski’s treatment, if insurance were not accepted for the traditional treatment.

  • beatis
    2 December 2011

    @Kat Arney,

    I read that Burzynski puts his patients on chemotherapy. Then how can he claim that improvement is caused by his antineoplastons?

  • beatis
    2 December 2011

    @Anon,

    I don’t think it is the fear or jealousy of pioneering research new that has ignited the discussion on Burzynski’s treatments, but the genuine concern that cancer patients will be taken in by having to pay a huge amount of money out of pocket for a treatment that is less than promising.

  • Callum J Hackett
    1 December 2011

    Anon (interesting that you should hide your name behind such an impassioned speech), you make the whole thing sound very poetic, but in doing so completely undermine the scientific process and everything that has brought us where we are today in modern medicine.

    If we treated the scientific method in such a fashion, we would not have the treatments and therapies that we do – it would be a torturous free-for-all dominated by witchcraft and wise-women.

    And as for just one patient, or even two, three or more showing signs of improvement under this treatment, any basic knowledge of proper scientific conduct informs us that anecdotal evidence does not mean anything. You have to look into ALL the possible surrounding factors, and I doubt that you have looked at Burzynski’s research or delved into exactly what medicine he uses. I haven’t done so fully myself, but I am aware that he possibly uses traditional chemotherapy medicine under the cover of his antineoplastons, thus getting the job done while giving his pseudo-treatment a good name. That’s deception.

    Again, you have to look at everything surrounding the issue and look for the rational explanation. If you think you hear a ghost, you don’t just assume it is one because there is no evidence whatsoever for any such phenomena – it’s based on a human fantasy. Instead, we trust our scientists who deeply care for their fields of research but also know how to research properly and effectively.

    In this case, it is beyond doubt that Burzynski’s treatment does NOT work.

  • Anon
    1 December 2011

    I just read this:
    @HopeForLaura Ben
    Official MRI report – 36% decrease in tumour size since last scan
    6 weeks ago! Hell yeah!!! #Burzynski

    http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day

    I am deeply ashamed of the British attitude to this.

    If only one patient has had an incurable tumour, which the NHS has
    not been able to help be reduced, let alone disapear. The we
    should be more resepectful and not feel the need to jump on the
    bandwagon of the nasty need we have here to get a thrill we have
    developed in this country of people who get a gleel out of damming
    anything new.

    We used to pride ourselves on dignity and celebrate pioneering
    steps vs get ourselves in the way to allow the outcome to occur
    before judging.

    This clinic ‘seems’ as if has been at the effect of the goverment
    and pharma in the USA. People like New York Times and Antony
    Robbins speak positively about someone in their own country and
    the FDA are allowing trials. Why are you speaking out now and
    getting involved?

    It makes you look like the conspiracy theories have some basis
    surely?

    I am deeply disapointed because as a cancer patient wishing to
    learn about what is in the world having watched the hounding of
    laura who this country can not help who has had a 36% ruduction in
    a tumour when the UK can not produce this is digusting
    behaviour..

    She should be let to make her choices, empowered and we should be
    celebrating with her. It makes anyone who wishes to consider
    something new be under the threat of bullying and a stress that i
    can tell you straight, is harmful to a cancer patient to have this
    kind of hounding be allowed by the quack attack community who can
    actually impact someones mental and physical well-being when their
    life is literally at stake is shameful.

    What happened in this country that we became so free in speech we
    think this right out balances respect, compassion and overides
    moral compasses to do this.

    I am shocked quite frankly at your timing and that you have jumped
    on the media bandwagon just to make a point.

    Are you exploring personalised gene targeted therapies in any of
    your trials or new ideas like this .. answer me this? Probably.
    Just because you can not replicate something does not give you the
    justification to not be repectful of others research that ‘seems’
    to be having any kind of postiive effect at all?

    Isnt it so that even the NHS are now starting trials in gene
    targetted realm? If the NHS feel the value to explore and do
    trials then we need to make it easier for people to be open to
    them and not make patients frightened to say they are doing
    something that is in trials in the US.

    Why has the government in the US not stopped the trials, denied
    the film and allowed the patients to have a petition if there is
    nothing worth exploring?

    When you do campiaigns to raise money for yourself to find a cure
    and get so much support i find it really bad taste to write this
    blog now in the middle of a situation where a patient who IS
    getting good results in the UK is left unprotected from people who
    to be quite frankly have no respect for those who’s life is at
    stake.

    I am sorry, whilst i am interested to hear your view, i am ashamed
    to have raised money for you.

    I want the freedom to not fear progress.

    We used to be a country that led the way in new ideas and have
    compassion and care about patients.

    I am distressed by your lack of support for Laura and all patients
    who have tired it your way and lack of moral standing.

    I think you owe cancer patients an apology for jumping in and
    seeming to support people who are harrassing patients for their
    freedom to choice treatments that quiet franlkly are in regulated
    tirals and having some success.

    How low can you get?

    a cancer patient who does not wish to get attacked or hounded by
    the hysteria being created by people who just don’t have any
    respect for life.

    thank you

  • reply
    Kat Arney
    1 December 2011

    Dear Anon,

    Thank you for your comment, which unfortunately got stuck in our spam trap due to the link in it.

    We are pleased to hear Laura is doing well, and wish her the very best. As we point out in our post, we have no wish to extinguish the hope that Laura and her family – and others in her position – are holding out.

    We would like to make it clear that this post is specifically voicing our concerns about the scientific evidence surrounding antineoplaston treatment. We feel it is important to put forward the scientific facts about this treatment, particularly given that it is held up as a “cure for cancer” by certain internet sites. All we ask is that people considering pursuing this treatment are aware of the facts and go into it with their eyes open.

    As things stand, there is very little solid scientific evidence to show that antineoplastons are effective against cancer. So at this moment in time it must be regarded as an unproven, experimental treatment, offered at a very high price.

    Please be assured that we share your concern for people with cancer, and patients are at the heart of everything we do. But, as a research-based organisation, we feel it is important that patients are fully informed about the existing scientific evidence for the benefits antineoplaston treatment.

    It is always great news to hear about individuals beating the odds and surviving cancer. We eagerly await the publication of the results from Dr Burzynski’s clinical trials of antineoplastons – which have been running for many years – in a peer-reviewed scientific journal, so scientists and doctors around the world can see and judge his results for themselves.

    Best wishes,
    Kat

    Dr Kat Arney, Science Information Manager

  • Kevin
    29 November 2011

    The alternative medicine market is billions in dollar in size as well, and many companies making alternative medicines are owned by the same big pharma companies making real drugs, just in factories with no quality control.

    This guy in particular is just using standard big pharma drugs for purposes they’ve shown to not work for.

  • Callum J Hackett
    28 November 2011

    Kevinmetcalfe, you don’t specify your illness so, apart from saying that you don’t have cancer, it’s difficult to assess why any ‘alternative medicine’ might help you (again difficult because you don’t say what the ‘medicine’ is).

    Some people benefit from alternative treatments because they don’t have very severe problems that require proper medicinal action. A complex interaction of various factors that induce a good placebo effect can certainly improve a person’s well-being, and this is a good thing.

    However, if one ‘alternative medicine’ helps some people with minor illnesses, that doesn’t mean we should be endorsing all ‘alternative medicines’. Homeopathy is an absolute disgrace. These antineoplastons seem quite obviously a rip-off.

    I would agree, being a sufferer of a life-long genetic illness, that patients face difficulties with doctors in this country. However these are difficulties with the people – with lack of communication, lack of interest, lack of active help. The actual treatments that the NHS provides are tried, tested, and the best possible thing for you.

    As I said before, any ‘alternative medicine’ that works is actually just ‘medicine’. And if these things really, truly did work, pharmaceutical companies would be all over them making money off their success.

  • kevinmetcalfe
    28 November 2011

    people seem to think that alternative treatments don’t work (or help) don’t forget medicine is a multi-billion industry and anything with that level of money will have politics attached, I have sufferd with an illness for 4 years now and if I did everything my doctors said i wouldn’t be able to get out of bed, but im leading a fairly normal life because of alternative medicine, granted you can’t compare my case to someone with cancer but anything that strengtens the body will have a positive effect, something doctors never seem to tell you.

  • JLI
    27 November 2011

    [These accusations are offensive to all of our scientists, doctors, nurses, fundraisers and supporters, ]

    In this case offensive behaviour doesn’t stop there. This is what someone claiming to represent Burzynski wrote to a cancer patient who chose conventional treatment, and has been cancer free for the last 7 years, and expressed criticism against Burzynski:

    “Go drink a glass of chemo..on the rocks. You are psycho but at least you have an excuse. Radiation and chemo turned you out..you no longer think with logic.”

    We know that he is a marketing person person for a Burzynski supporter group, and that The Burzynski Clinic links to this group on their website. We don’t know if this person really represents Burzynski, but unless the clinic refutes the connection, we have no choice but to assume that the clinic shares the same contempt for cancer patients.

    The full disgusting E-mail exchange is presented here: http://anaximperator.wordpress.com/2011/11/26/is-marc-stephens-really-a-representative-of-burzynski/

    It is a myth that clinics offering alternative therapies have higher degrees of empathy than those of us who work within the conventional system.

  • Janine Hardwick
    26 November 2011

    Thank you Kat, DIPG being the worse childhood cancer, it really needs to be cured. to be given your childs death sentence at diagnoses is something i wouldn’t wish on anybody. The odds are 0%_1%.

  • Janine Hardwick
    26 November 2011

    I’m vulnerable now, but when my son was ill i didn’t give him anything alternative. In hindsight because i’ve lost him i just wish that there was something else that i could have tried.

  • Callum J Hackett
    26 November 2011

    Your position is utterly understandable, Janine, and I’m sure anybody else would feel the same. Unfortunately, we all have to remain aware that the point of many alternative treatments is to rip off vulnerable people like you. Consciously or unconsciously, people who offer the treatments are taking money for something that doesn’t work.

  • Janine Hardwick
    26 November 2011

    If people want to go with alternative treatments it’s their choice. My son died after only being offered radiotherapy. His tumour couldn’t even be removed as it would have killed him. I would have tried anything.

  • Alan Henness
    26 November 2011

    Kurt

    It’s not up to scientists to prove it wrong; the onus is clearly on those making claims and charging money for their ‘cure’ to prove that their product does, indeed, work. So far, there has been no good, confirmed evidence that it does. If it’s as good as Burzynski appears to claim, then producing that evidence should be straightforward. Until such time, we are right to remain skeptical.

  • Kurt
    26 November 2011

    Cathy, thank you for a great response, I sincerely hope all scientists think like you. I sometimes get the impression that whenever a treatment seems “alternatives” and by that I mean outside of the general accepted approaches, a lot of scientists seem to be out to prove it wrong. I don’t have and neither do I want to make any statement about this particular example, however your post gave me that feeling as well. Now that I understand more where you are coming from, I understand why you wrote it.

    The only hope I have is that you and other “true” scientists maintain an open approach (and spirit) to drive science forward, because it is the only way.

    And Andy, I will always be a dreamer, so all I can say is nobody has been able to make a flying carpet YET. The day somebody does though, I’ll be in line to try it out. I hope you’ll come to watch me fly it! :-)

  • Andy
    26 November 2011

    @Kurt,

    If some aeroplanes crash, that doesn’t mean we should try flying carpets instead – and no amount of conversation or collaboration or open-mindedness is likely to change that.

  • Cathy
    25 November 2011

    “Cancer Research UK also works to secure rights to investigate and market out-of-patent drugs that could benefit patients – so-called ‘orphan’ drugs – such as fenretinide for childhood cancer.”

    Orphan drugs are NOT out of patent drugs, they are for rare diseases – also called orphan diseases, affecting orphan up to 5 people in 10,000. (European designation, USA differs slightly.

    As regards fenretidine, the EMA designation listing EU/3/06/426 states “Please note that this product was withdrawn from the Community Register of designated orphan medicinal products in February 2011 on request of the sponsor.”

  • reply
    Kat Arney
    25 November 2011

    Hi Cathy,
    Thanks for your comment. I have updated the post accordingly.
    Best wishes,
    Kat

  • Callum J Hackett
    25 November 2011

    Kurt, the simple fact is that there is no such thing as successful ‘alternative medicine’. If the treatment works, it is just ‘medicine’.

    There is no better approach to creating successful drugs and treatments than the rigorous scientific method that all respectable research scientists use, both in medicine and in all other fields. Collaboration is a great tool, but people in ‘alternative medicine’ don’t collaborate properly – they don’t conduct research properly; they keep data secret if it isn’t in their favour; and they are more interested in making money than helping people.

    The best they can do is help someone through the placebo effect; at worse, they not only give someone false hope, but can also push people closer to death by wasting their time when there are actually medically proven treatments available.

  • Callum J Hackett
    25 November 2011

    Janine, the hardship and suffering of families like yours and your friend’s is something that many people will never understand. But, cruelly and sadly, the desperate hope of ‘never saying never’ about treatments like antineoplastons is something that a handful of heartless ‘doctors’ take advantage of in order to make dishonest money.

    It seems horrible and wrong to say ‘no’ to anything labelled as a treatment – every instinct pushes you to try absolutely anything – but any money that someone would pay for scientifically questionable treatments such as these would be far better off donated to amazing organisations like Cancer Research UK. Though they may be unable to help your own family in the here and now, they will be able to save countless more lives in the long-term than any quack.

  • Kurt
    25 November 2011

    I don’t believe there is a conspiracy, but what bothers me is that science claim no alternative approach works, while at the same time thousands of people die with “proven” scientific approaches as well. It feels like you are measuring success in completely opposite ways.

    If only everybody would accept no therapy is perfect and leave everybody to do their best in improving treatments. Regardless of whether it is so called alternative or scientific approaches. Why not talk to each other? Rather then fighting, let’s look at the alternative approaches with a scientific OPEN mind to see if maybe there is something of value there. Nobody is right or wrong, not as long thousands of people die each year, so let’s use all of our energies on positive collaborative way rather them wasting it on showing who’s best.

  • Janine Hardwick
    25 November 2011

    my 5 year old son recently died of DIPG, there is no cure for this evil brain tumour. I know of a family who’s daughter is having antineoplastons. They just want their little girl to live and i don’t blame them, It’s a shame it costs so much money, but it is the only hope they have. And who knows it could work for her, never say never.

  • reply
    Kat Arney
    25 November 2011

    Hi Janine,

    We’re so sorry to hear about your son, and about your friend’s daughter. You may be interested to know that we have just funded a project investigating the genes that have become faulty in DIPG. By understanding what’s gone wrong, our researchers are hoping to develop more effective treatments in the future to save families the pain you have gone through. You can read more about this project on our website:
    http://info.cancerresearchuk.org/news/archive/pressrelease/2011-11-18-nine-high-tech-gene-projects

    Best wishes,
    Kat
    Science Information Manager

    Comments

  • Henry Scowcroft
    10 January 2012

    Hi everyone,

    Regretfully we’ve decided to close comments on this thread. Please direct any future comments on this topic to the blog team at: [email protected]

    Thanks,

    Henry Scowcroft
    Cancer Research UK

  • Wyn
    8 January 2012

    30 minutes of research and some rational thinking would put this to bed.

    Until results are published and reviewed this is (at best) an experimental treatment.

    The clinic has had 30 years to collate data over dozens and dozens of trials – none of which have reported at phase 3.

    Even the case studies that are printed show the ue of standard oncology medicine (eg chemotherapy) along side the antineoplastons. How could we ever know what is actually working?

    The cost is obscene, the data weak and the spin dizzying.

    Hope is good, ambulance chasing is not.

    Shame on you Burzynski.

  • Callum J Hackett
    5 December 2011

    Michael, when you start to talk of conspiracy theories, you immediately lose credibility. Scientists, doctors, and researchers are not different from the rest of us – they care about people, and they go into their jobs, taking years longer than anyone else to master their profession, in order to help people. Even if there were a few bad eggs, there simply isn’t even a financial incentive to suppress information about ‘successful’ alternative treatments. We should be singing the praises of people like the volunteers and researchers at Cancer Research UK because they are saving lives. People who push alternative treatments very often cause death by convincing people to not have conventional (i.e. effective) treatment.

    Your argument also doesn’t rest on science and facts. Instead, you are convinced that treatments that sound nice ought to be the ones that work. Well that’s just not how medicine functions – if it did, then a lot of nice-sounding medieval treatments ought to work, and they don’t.

    Yes, compared to treatments and therapies a few decades and centuries from now, the way we often deal with cancer in the 21st century seems barbaric. But the fact remains that fewer and fewer people are dying from cancer, and that’s because they are successful treatments. They are proven to work. They’ve been through rigorous, randomised, double-blind, controlled and peer-reviewed trials – ‘alternative’ medicines have none of this because they are just money-making machines that take advantage of the misinformed and vulnerable.

    And, for reference, I have had three operations in the past year to combat a genetic cancer syndrome, so I’m educated on the issue too. For my particular type of illness, cutting out all the tumours is the only course of action that can be taken. In the future, there might be the option of gene therapy, but we don’t have that now, and I’m not going to go searching for alternative remedies simply because I don’t like the sound of the most effective current treatment. I am quite happy to put myself in the hands and expertise of experienced NHS doctors because they work with the scientific method. And, at the end of the day, no matter how romantic and poetic it is to think of alternatives, it is that same scientific method that has brought us countless medicines, vaccines, transport, technology, communications, and the computer you’re using to make false accusations against a well-meaning charity.

  • Michael Marten
    5 December 2011

    The vitriolic hate and suppressive rage of scientists religously defending their dogmatic fundamentalism never fails to amaze me.
    Especially when their paycheck is involved.

    You guys are a rabid unimpressive bunch who have watched tens of thousands die from injecting poisons and irradiating with deadly frequencies, hoping the persons immune system can recover and save the person and not let them die. And you scream that that is a cure? And slicing off bodyparts is a cure? And that’s 21st century?

    I personally will watch and hope that applying multiple therapies will cause healing of diseases, switching off mutagenic genes and re-installing the ultra-efficiency of the body’s immune system (I am a trained biochemist and food engineer who has studied “alternative” to mainstream sciences). My mother has had cancer twice, so don’t lay on me that I’m either uneducated or couldn’t imagine what it’s like to have someone close to you with cancer.

    I’ll be reading both sides of the story, looking for cures and seeing the money in everyones’ eyes…..

  • JLI
    4 December 2011

    @ Stacy

    I think it is easy to understand why all those testimonials sound convincing. That is what they are meant to. But we don’t have to look through all 100 testimonials to form an opinion if they are reliable or not. Three of these testimonials were used in a movie, which was made to promote this clinic. And furthermore the documents that allegedly back these testimonial up have been published. It is a fair assumption, that the reason those thee testimonials were presented in the movie was, that they were the most convincing and best documented examples. Please try and compare what these testimonials claim with what is explained here: http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

  • Callum J Hackett
    3 December 2011

    Stacy: “I just don’t get it. If the treatment is uneffective, then why are there so many Burzynski patients who have beaten all odds of so many terminal cancers?”

    Conversely, if the treatment *is* effective, then why are there so many well-qualified and well-respected scientists who say that the treatment is bunk?

    To understand the answers to these questions, you need to familiarise yourself with research and the informed opinions of professionals. Our intuitions as laymen often deceive us.

    Of course, if any one us of us does not have the requisite time or expertise to understand the scientific literature, then the most reasonable thing for to do is trust the conclusions of the academic community, and there is a consensus that Burzynski’s treatment doesn’t work.

    It’s counter-intuitive, but anecdotal examples – not matter how many – are not an example of good evidence.

  • Stacy
    3 December 2011

    ….yet there’s over 100 testimonials on the Burzynski patient group web page of people who have survived various cancers thanks to Dr. Burzynski. This includes a long list of terminal cancers, and if I’m not mistaken, DIPG as well. Are we to believe these are just lucky occurances?

    Laura’s positive tumour reduction is seemingly right on track with many of the Burzynki “trials”. My guess is it will continue to shrink and will be undetectable within a year- just as so many of his other successful trials have done.

    I just don’t get it. If the treatment is uneffective, then why are there so many Burzynski patients who have beaten all odds of so many terminal cancers?

    On the issue of cost, I believe that radiation, chemotherapy and all of the doctor’s visits (including MRI’s, PET’s, CAT’s, etc.) involved in traditional treatment would actually be much more expensive than Dr. Burzynski’s treatment, if insurance were not accepted for the traditional treatment.

  • beatis
    2 December 2011

    @Kat Arney,

    I read that Burzynski puts his patients on chemotherapy. Then how can he claim that improvement is caused by his antineoplastons?

  • beatis
    2 December 2011

    @Anon,

    I don’t think it is the fear or jealousy of pioneering research new that has ignited the discussion on Burzynski’s treatments, but the genuine concern that cancer patients will be taken in by having to pay a huge amount of money out of pocket for a treatment that is less than promising.

  • Callum J Hackett
    1 December 2011

    Anon (interesting that you should hide your name behind such an impassioned speech), you make the whole thing sound very poetic, but in doing so completely undermine the scientific process and everything that has brought us where we are today in modern medicine.

    If we treated the scientific method in such a fashion, we would not have the treatments and therapies that we do – it would be a torturous free-for-all dominated by witchcraft and wise-women.

    And as for just one patient, or even two, three or more showing signs of improvement under this treatment, any basic knowledge of proper scientific conduct informs us that anecdotal evidence does not mean anything. You have to look into ALL the possible surrounding factors, and I doubt that you have looked at Burzynski’s research or delved into exactly what medicine he uses. I haven’t done so fully myself, but I am aware that he possibly uses traditional chemotherapy medicine under the cover of his antineoplastons, thus getting the job done while giving his pseudo-treatment a good name. That’s deception.

    Again, you have to look at everything surrounding the issue and look for the rational explanation. If you think you hear a ghost, you don’t just assume it is one because there is no evidence whatsoever for any such phenomena – it’s based on a human fantasy. Instead, we trust our scientists who deeply care for their fields of research but also know how to research properly and effectively.

    In this case, it is beyond doubt that Burzynski’s treatment does NOT work.

  • Anon
    1 December 2011

    I just read this:
    @HopeForLaura Ben
    Official MRI report – 36% decrease in tumour size since last scan
    6 weeks ago! Hell yeah!!! #Burzynski

    http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day

    I am deeply ashamed of the British attitude to this.

    If only one patient has had an incurable tumour, which the NHS has
    not been able to help be reduced, let alone disapear. The we
    should be more resepectful and not feel the need to jump on the
    bandwagon of the nasty need we have here to get a thrill we have
    developed in this country of people who get a gleel out of damming
    anything new.

    We used to pride ourselves on dignity and celebrate pioneering
    steps vs get ourselves in the way to allow the outcome to occur
    before judging.

    This clinic ‘seems’ as if has been at the effect of the goverment
    and pharma in the USA. People like New York Times and Antony
    Robbins speak positively about someone in their own country and
    the FDA are allowing trials. Why are you speaking out now and
    getting involved?

    It makes you look like the conspiracy theories have some basis
    surely?

    I am deeply disapointed because as a cancer patient wishing to
    learn about what is in the world having watched the hounding of
    laura who this country can not help who has had a 36% ruduction in
    a tumour when the UK can not produce this is digusting
    behaviour..

    She should be let to make her choices, empowered and we should be
    celebrating with her. It makes anyone who wishes to consider
    something new be under the threat of bullying and a stress that i
    can tell you straight, is harmful to a cancer patient to have this
    kind of hounding be allowed by the quack attack community who can
    actually impact someones mental and physical well-being when their
    life is literally at stake is shameful.

    What happened in this country that we became so free in speech we
    think this right out balances respect, compassion and overides
    moral compasses to do this.

    I am shocked quite frankly at your timing and that you have jumped
    on the media bandwagon just to make a point.

    Are you exploring personalised gene targeted therapies in any of
    your trials or new ideas like this .. answer me this? Probably.
    Just because you can not replicate something does not give you the
    justification to not be repectful of others research that ‘seems’
    to be having any kind of postiive effect at all?

    Isnt it so that even the NHS are now starting trials in gene
    targetted realm? If the NHS feel the value to explore and do
    trials then we need to make it easier for people to be open to
    them and not make patients frightened to say they are doing
    something that is in trials in the US.

    Why has the government in the US not stopped the trials, denied
    the film and allowed the patients to have a petition if there is
    nothing worth exploring?

    When you do campiaigns to raise money for yourself to find a cure
    and get so much support i find it really bad taste to write this
    blog now in the middle of a situation where a patient who IS
    getting good results in the UK is left unprotected from people who
    to be quite frankly have no respect for those who’s life is at
    stake.

    I am sorry, whilst i am interested to hear your view, i am ashamed
    to have raised money for you.

    I want the freedom to not fear progress.

    We used to be a country that led the way in new ideas and have
    compassion and care about patients.

    I am distressed by your lack of support for Laura and all patients
    who have tired it your way and lack of moral standing.

    I think you owe cancer patients an apology for jumping in and
    seeming to support people who are harrassing patients for their
    freedom to choice treatments that quiet franlkly are in regulated
    tirals and having some success.

    How low can you get?

    a cancer patient who does not wish to get attacked or hounded by
    the hysteria being created by people who just don’t have any
    respect for life.

    thank you

  • reply
    Kat Arney
    1 December 2011

    Dear Anon,

    Thank you for your comment, which unfortunately got stuck in our spam trap due to the link in it.

    We are pleased to hear Laura is doing well, and wish her the very best. As we point out in our post, we have no wish to extinguish the hope that Laura and her family – and others in her position – are holding out.

    We would like to make it clear that this post is specifically voicing our concerns about the scientific evidence surrounding antineoplaston treatment. We feel it is important to put forward the scientific facts about this treatment, particularly given that it is held up as a “cure for cancer” by certain internet sites. All we ask is that people considering pursuing this treatment are aware of the facts and go into it with their eyes open.

    As things stand, there is very little solid scientific evidence to show that antineoplastons are effective against cancer. So at this moment in time it must be regarded as an unproven, experimental treatment, offered at a very high price.

    Please be assured that we share your concern for people with cancer, and patients are at the heart of everything we do. But, as a research-based organisation, we feel it is important that patients are fully informed about the existing scientific evidence for the benefits antineoplaston treatment.

    It is always great news to hear about individuals beating the odds and surviving cancer. We eagerly await the publication of the results from Dr Burzynski’s clinical trials of antineoplastons – which have been running for many years – in a peer-reviewed scientific journal, so scientists and doctors around the world can see and judge his results for themselves.

    Best wishes,
    Kat

    Dr Kat Arney, Science Information Manager

  • Kevin
    29 November 2011

    The alternative medicine market is billions in dollar in size as well, and many companies making alternative medicines are owned by the same big pharma companies making real drugs, just in factories with no quality control.

    This guy in particular is just using standard big pharma drugs for purposes they’ve shown to not work for.

  • Callum J Hackett
    28 November 2011

    Kevinmetcalfe, you don’t specify your illness so, apart from saying that you don’t have cancer, it’s difficult to assess why any ‘alternative medicine’ might help you (again difficult because you don’t say what the ‘medicine’ is).

    Some people benefit from alternative treatments because they don’t have very severe problems that require proper medicinal action. A complex interaction of various factors that induce a good placebo effect can certainly improve a person’s well-being, and this is a good thing.

    However, if one ‘alternative medicine’ helps some people with minor illnesses, that doesn’t mean we should be endorsing all ‘alternative medicines’. Homeopathy is an absolute disgrace. These antineoplastons seem quite obviously a rip-off.

    I would agree, being a sufferer of a life-long genetic illness, that patients face difficulties with doctors in this country. However these are difficulties with the people – with lack of communication, lack of interest, lack of active help. The actual treatments that the NHS provides are tried, tested, and the best possible thing for you.

    As I said before, any ‘alternative medicine’ that works is actually just ‘medicine’. And if these things really, truly did work, pharmaceutical companies would be all over them making money off their success.

  • kevinmetcalfe
    28 November 2011

    people seem to think that alternative treatments don’t work (or help) don’t forget medicine is a multi-billion industry and anything with that level of money will have politics attached, I have sufferd with an illness for 4 years now and if I did everything my doctors said i wouldn’t be able to get out of bed, but im leading a fairly normal life because of alternative medicine, granted you can’t compare my case to someone with cancer but anything that strengtens the body will have a positive effect, something doctors never seem to tell you.

  • JLI
    27 November 2011

    [These accusations are offensive to all of our scientists, doctors, nurses, fundraisers and supporters, ]

    In this case offensive behaviour doesn’t stop there. This is what someone claiming to represent Burzynski wrote to a cancer patient who chose conventional treatment, and has been cancer free for the last 7 years, and expressed criticism against Burzynski:

    “Go drink a glass of chemo..on the rocks. You are psycho but at least you have an excuse. Radiation and chemo turned you out..you no longer think with logic.”

    We know that he is a marketing person person for a Burzynski supporter group, and that The Burzynski Clinic links to this group on their website. We don’t know if this person really represents Burzynski, but unless the clinic refutes the connection, we have no choice but to assume that the clinic shares the same contempt for cancer patients.

    The full disgusting E-mail exchange is presented here: http://anaximperator.wordpress.com/2011/11/26/is-marc-stephens-really-a-representative-of-burzynski/

    It is a myth that clinics offering alternative therapies have higher degrees of empathy than those of us who work within the conventional system.

  • Janine Hardwick
    26 November 2011

    Thank you Kat, DIPG being the worse childhood cancer, it really needs to be cured. to be given your childs death sentence at diagnoses is something i wouldn’t wish on anybody. The odds are 0%_1%.

  • Janine Hardwick
    26 November 2011

    I’m vulnerable now, but when my son was ill i didn’t give him anything alternative. In hindsight because i’ve lost him i just wish that there was something else that i could have tried.

  • Callum J Hackett
    26 November 2011

    Your position is utterly understandable, Janine, and I’m sure anybody else would feel the same. Unfortunately, we all have to remain aware that the point of many alternative treatments is to rip off vulnerable people like you. Consciously or unconsciously, people who offer the treatments are taking money for something that doesn’t work.

  • Janine Hardwick
    26 November 2011

    If people want to go with alternative treatments it’s their choice. My son died after only being offered radiotherapy. His tumour couldn’t even be removed as it would have killed him. I would have tried anything.

  • Alan Henness
    26 November 2011

    Kurt

    It’s not up to scientists to prove it wrong; the onus is clearly on those making claims and charging money for their ‘cure’ to prove that their product does, indeed, work. So far, there has been no good, confirmed evidence that it does. If it’s as good as Burzynski appears to claim, then producing that evidence should be straightforward. Until such time, we are right to remain skeptical.

  • Kurt
    26 November 2011

    Cathy, thank you for a great response, I sincerely hope all scientists think like you. I sometimes get the impression that whenever a treatment seems “alternatives” and by that I mean outside of the general accepted approaches, a lot of scientists seem to be out to prove it wrong. I don’t have and neither do I want to make any statement about this particular example, however your post gave me that feeling as well. Now that I understand more where you are coming from, I understand why you wrote it.

    The only hope I have is that you and other “true” scientists maintain an open approach (and spirit) to drive science forward, because it is the only way.

    And Andy, I will always be a dreamer, so all I can say is nobody has been able to make a flying carpet YET. The day somebody does though, I’ll be in line to try it out. I hope you’ll come to watch me fly it! :-)

  • Andy
    26 November 2011

    @Kurt,

    If some aeroplanes crash, that doesn’t mean we should try flying carpets instead – and no amount of conversation or collaboration or open-mindedness is likely to change that.

  • Cathy
    25 November 2011

    “Cancer Research UK also works to secure rights to investigate and market out-of-patent drugs that could benefit patients – so-called ‘orphan’ drugs – such as fenretinide for childhood cancer.”

    Orphan drugs are NOT out of patent drugs, they are for rare diseases – also called orphan diseases, affecting orphan up to 5 people in 10,000. (European designation, USA differs slightly.

    As regards fenretidine, the EMA designation listing EU/3/06/426 states “Please note that this product was withdrawn from the Community Register of designated orphan medicinal products in February 2011 on request of the sponsor.”

  • reply
    Kat Arney
    25 November 2011

    Hi Cathy,
    Thanks for your comment. I have updated the post accordingly.
    Best wishes,
    Kat

  • Callum J Hackett
    25 November 2011

    Kurt, the simple fact is that there is no such thing as successful ‘alternative medicine’. If the treatment works, it is just ‘medicine’.

    There is no better approach to creating successful drugs and treatments than the rigorous scientific method that all respectable research scientists use, both in medicine and in all other fields. Collaboration is a great tool, but people in ‘alternative medicine’ don’t collaborate properly – they don’t conduct research properly; they keep data secret if it isn’t in their favour; and they are more interested in making money than helping people.

    The best they can do is help someone through the placebo effect; at worse, they not only give someone false hope, but can also push people closer to death by wasting their time when there are actually medically proven treatments available.

  • Callum J Hackett
    25 November 2011

    Janine, the hardship and suffering of families like yours and your friend’s is something that many people will never understand. But, cruelly and sadly, the desperate hope of ‘never saying never’ about treatments like antineoplastons is something that a handful of heartless ‘doctors’ take advantage of in order to make dishonest money.

    It seems horrible and wrong to say ‘no’ to anything labelled as a treatment – every instinct pushes you to try absolutely anything – but any money that someone would pay for scientifically questionable treatments such as these would be far better off donated to amazing organisations like Cancer Research UK. Though they may be unable to help your own family in the here and now, they will be able to save countless more lives in the long-term than any quack.

  • Kurt
    25 November 2011

    I don’t believe there is a conspiracy, but what bothers me is that science claim no alternative approach works, while at the same time thousands of people die with “proven” scientific approaches as well. It feels like you are measuring success in completely opposite ways.

    If only everybody would accept no therapy is perfect and leave everybody to do their best in improving treatments. Regardless of whether it is so called alternative or scientific approaches. Why not talk to each other? Rather then fighting, let’s look at the alternative approaches with a scientific OPEN mind to see if maybe there is something of value there. Nobody is right or wrong, not as long thousands of people die each year, so let’s use all of our energies on positive collaborative way rather them wasting it on showing who’s best.

  • Janine Hardwick
    25 November 2011

    my 5 year old son recently died of DIPG, there is no cure for this evil brain tumour. I know of a family who’s daughter is having antineoplastons. They just want their little girl to live and i don’t blame them, It’s a shame it costs so much money, but it is the only hope they have. And who knows it could work for her, never say never.

  • reply
    Kat Arney
    25 November 2011

    Hi Janine,

    We’re so sorry to hear about your son, and about your friend’s daughter. You may be interested to know that we have just funded a project investigating the genes that have become faulty in DIPG. By understanding what’s gone wrong, our researchers are hoping to develop more effective treatments in the future to save families the pain you have gone through. You can read more about this project on our website:
    http://info.cancerresearchuk.org/news/archive/pressrelease/2011-11-18-nine-high-tech-gene-projects

    Best wishes,
    Kat
    Science Information Manager