A response to the father of a Burzynski patient

If there’s one thing that’s difficult about writing about Stanislaw Burzynski, his highly dubious (nay, bogus) antineoplaston cancer therapy, his “personalized gene-targeted cancer therapy for dummies,” and his shameless rebranding of an orphan drug as a miracle cure for cancer, it’s trying to balance a righteous anger at what he does to desperate cancer patients with a knowledge of the effect that my words will have on some of those same desperate cancer patients. Most regular readers of this blog know who Stanislaw Burzynski is, but, even if I’ve just written about him a few days ago (this time in the context of his apparently having managed to slither away from justice again, thanks to the incompetence of the Texas Medical Board), I always feel obligated to remind my readers, mainly for the benefit of newbies and any person who happens to come across this blog as a result of a Google search for Burzynski or antineoplastons.

I also feel compelled to remind them, again when cancer patients looking for alternatives to conventional treatment stumble across this blog, that there are many patients whose families have gone to huge lengths to raise sums as high as several hundred thousand dollars to pay for treatment at the Burzynski Clinic under the auspices of Dr. Burzynski’s “clinical trials” that never seem to produce much in the way of useful data despite his having opened and closed dozens of them over the last two decades since he was ordered in the 1990s by the Texas Medical Board and the FDA not to use antineoplaston therapy except in the context of a clinical trial. Despite that, Dr. Burzynski has set up quite the cottage industry in which patients pay hundreds of thousands of dollars for the “privilege” of being treated on a “clinical trial” with antineoplaston therapy, even though it is not FDA-approved, has never been convincingly shown to work, and has significant toxicities despite Burzynski’s claims that his treatment is so nontoxic. So we have many patients doing what I’ve referred to as harnessing the generosity of kind-hearted strangers to pay for woo. It’s a depressing litany of people, mostly children, teenagers, and young adults like Billie Bainbridge, Kelli Richmond, Olivia Bianco, and Shana Pulkinen. And, most recently, there have been Rachael Mackey and Amelia Saunders.

These patients come from all over the world, even from countries with universal health coverage, like the U.K. and Australia, to spend precious weeks of their brief remaining time in a foreign country far away from home and pay hundreds of thousands of dollars that they don’t need to spend for a treatment that cannot save them. Telling them that on this blog is not easy, because I take care of cancer patients. Even though I have thus far been fortunate enough not to have cancer myself, that doesn’t mean family members haven’t; indeed, my mother-in-law died nearly four years ago of a particularly nasty form of breast cancer. Even as a cancer doctor, I still wanted to believe that there was hope, even though all my knowledge told me that there wasn’t. At that point, even I might have been tempted by Burzynski, making it a good thing indeed that I was only vaguely aware of Burzynski four years ago. So, even though I haven’t had a child with an inoperable brain tumor or a spouse with some particularly lethal malignancy, I do get it.

That’s why it causes an uneasy feeling to see Richard Saunders, the father of Amelia Saunders, show up in the comments of my blog post about his daughter and the Saunders family’s quest to raise money and fund a trip to Houston to see Burzynski:

Hi Everyone –

I’m not one to post on forums such as this as it doesn’t normally gain anything for us, and neither for my daughter in the process. What I did want to say as a subjective view from my perspective as Amelia’s father.

Amelia tumour has, as anybody who can use wikipedia would be aware, the worst prognosis of virtually any brain tumour there is. It was growing before we went to Houston, and it has remained relatively stable since. Now you could say that this is the antineoplaston treatment or you could not – I know what I believe, but then most don’t believe the treatment does anything at all.

What constantly upsets me is the number of people saying Burzynski offers ‘false hope’ or that he is ‘charging too much’. Do any of you in the US understand the real world costs of treatments such as chemotherapy or radiation, or indeed the costs to the public with our NHS here in the UK? These treatments that can have the most awful side effects and in many cases kill the child in the process? And besides, can you really put a price on my child’s head? If we had chosen the ‘conventional’ treatment here, we would have cost the UK taxpayer many tens of thousands of pounds with potentially little effect on the tumour. Amelia would likely not be here now either. Why would we do this?

The bottom line is I really wouldn’t care if he charged 10 times what he charges us now – the difference is that we made that choice.

One more thing – Burzynski’s treatment is NOT chemo. You people really are misinformed and just making assumptions! My daughter is only on antineoplastons.

PLEASE stop making radical assumptions about a treatment that none of you have any real world experience of. I have personally searched through around 20 years worth of medical trial data to find anything that has any effect on DIPG tumours – and there isn’t anything. Would you, in my shoes, not at least try? Or would you sit there and say ‘oh no, that is too expensive – we won’t try to save our child’s life’. I expect not.

Lastly, if you believe the people at the Burzynski clinic work there for free – then you need to get your heads out of the sand and understand that they don’t. They are a business. They are there to make money, like any other business in the world. They don’t do it for free, they charge for their time and experience. They do NOT charge for the antineoplaston drug, we have never paid for this.

I would therefore ask that, if any of you have an ounce of morality in you, then you would understand that writing blogs such as this do serious harm to the wellbeing of people like us. I realise we have free speech and all, but please just consider the consequences of what you write.

I honestly believe a lot of this is because people just don’t understand. There is a comment above about somebody’s aunt who is alive today because of radiation and chemo. Fantastic. How many DIPG tumour kids have lived after radiation and chemo? I’ve found 1 so far? You need to understand there are 120+ types of brain tumour, and you need to treat every single one differently. No miracle cures, no miracle treatment.

I’ll now go back to my very real world, where I want my daughter to live. I honestly hope that my writing on here makes you understand this a little more.

Many thanks

Richard Saunders (father of Amelia)
Reading, UK

My first reaction is to try to assure Mr. Saunders that far be it from me to want to upset him. He has quite enough to deal with, both physically and emotionally, given his daughter’s cancer. On the other hand, when I see Burzynski once again milk another family dry by leading them on with false hope, I cannot remain silent, even if an unintended consequence of speaking out publicly about Burzynski is that it upsets parents like Mr. Saunders. Would it were otherwise, but there is no other way to illustrate the harm that Burzynski does. Nor is it an attack on him or his family to say this; at least, it is not intended that way, even if it might be perceived that way. No one here, least of all myself, wants to see a child die of cancer. Everyone here, particularly myself, wants to see children like Amelia beat the odds, however long. Everyone. However, we are forced by nature and the limitations of medicine to be realists. In fact, in reply to Mr. Saunders’ plea that writing blog posts like my original post about his daughter “do serious harm to the well being of people like us,” I would respond that Dr. Burzynski’s unethical actions and promotion of a therapy with no compelling evidence that it is effective to the tune of hundreds of thousands of dollars does far more harm, physical, financial, and, yes, to the well-being” of cancer patients that, as much as I might have upset Mr. Saunders by my post, I would be remiss if I did not “tell it as I see it.” If I can change the mind of just one of Burzynski’s prospective patients, I will consider writing posts like this time well spent.

Mr. Saunders’ e-mail is also informative in that it reveals that what Dr. Burzynski tells patients and patient families is not in line with the evidence or even basic oncology. For example, Burzynski has apparently told Mr. Saunders that his treatment is not chemotherapy, that his antineoplaston therapy is not chemotherapy. This is, quite simply, incorrect; Burzynski has either lied to Mr. Saunders or is so misinformed that he really believes that antineoplastons are not chemotherapy. The word “chemotherapy” has the connotation of the really toxic stuff, the stuff that makes your hair fall out and your immune system tank, but that’s simply a popular misconception of what chemotherapy is. In fact, virtually any drug used against cancer that is selectively toxic to cancer cells is chemotherapy. That includes hormonal agents and all those targeted agents that Burzynski mixes together like Severus Snape mixing potions together at Hogwarts, the main difference being that Snape knew what he was doing and his potions worked. Antineoplastons are chemotherapy. Period. Nor are they “non-toxic.” In fact, they are quite toxic at the doses that Burzynski uses. For example, hypernatremia from antineoplastons is a very real and serious problem that Burzynski routinely poo-poos, denies, and downplays.

Finally, I hope that perhaps the discussion of Amelia’s case might ultimately persuade Mr. Saunders that he is not accomplishing anything by going to Burzynski other than subjecting his daughter to a lot of treatment for no payoff. In a recent Facebook status update, Mr. Saunders pointed out:

We’ve now been giving Amelia the treatment for 237 days, which means that by my calculations, we have changed just over 500 IV bags of Antineoplastons, taken around 80 blood samples, had over a hundred calls with Houston, countless meetings with the hospital here, 9 MRI scans, and travelled around 10,000 miles to Houston and back. We have done all of this ourselves, with help from the local hospital team here who have been fantastically helpful given the situation, as well as an army of friends and family who helped make all this a reality. Amazing, really really amazing. Thank you.

You do not need me to tell you how hard this all is. The numbers speak for themselves. Because we want to maximise the use of the drugs and minimise the amount of shipping from Texas, we stagger the bag changes – Amelia has 6 doses of each of 2 bags every 24 hours, but the bags now only last for 5 doses, which means we are sometimes changing bags at 3 or 4 in the morning, or before lunch, or before she goes to school. We remember all this, plan it, and make sure it all works. This treatment is a lot of work, it takes a lot of organising, and it has been unbelievably difficult some days fitting all this in. But we do it.

On the other hand, perhaps skeptics pointing out that the cysts that Mr. Saunders had taken as signs that the antineoplaston therapy was working were far more likely not to mean anything of the sort are having an effect. I took no pleasure in pointing this out, but rather wanted to counter this claim in case other desperate patients took it as evidence that antineoplastons work. As I pointed out at the time, the “cysts” are most likely represent (1) the way the cancer grows, with mixed cystic and solid regions and/or (2) the tumor outgrowing its blood supply, as tumors frequently do as they progress. Mr. Saunders seems to have tempered his previous elated words with a bit more realism:

We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.

Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.

Assuming Mr. Saunders reads this, it is my hope that he will take these MRIs not just to his oncologist but to a pediatric neuroradiologist experienced in reading MRIs of the brain. I would also ask him to have this neuroradiologist apply RECIST criteria to the scans after making sure that he knows how to apply RECIST criteria. Evaluating scans for potential response to therapy of brain malignancies requires an expert in neuroimaging, not an oncologist.

In conclusion, it was never my intention to upset the Saunders family, nor is it now. Mr. Saunders’ response reminds me, as it should remind the occasional skeptic whose understandable anger and revulsion at what Burzynski does can sometimes be misdirected unintentionally at families who want nothing more than to see their family member with cancer live. Most such families are not stupid, nor are they likely to be more gullible than the average person. No one knows how he will react to having a child like Amelia who develops a fatal malignancy until he actually has one. On the other hand, given the widespread harm that Burzynski has in my opinion been doing over the last 30 years, we cannot allow the potential emotional reaction of families of Burzynski patients silence us. The stakes are too high. We can, however, try our best to be empathetic and respectful while keeping the focus on the target: Stanislaw Burzynski, his clinic, and his research institute. Mr. Saunders might not believe it, but no one (aside from him and his family) would be happier than I if Burzynski’s therapy actually worked and had the potential to save his daughter’s life. I mean that.