More sad news about a Burzynski patient

As much as I try, even when I'm on vacation in an undisclosed warm location near a beach (actually, our hotel room has a balcony overlooking the ocean), occasionally news finds its way to me. Part of it is because I still get the odd e-mail or two, and I do check my e-mail every so often on vacation in case something is exploding. In any case, an update to a story I wrote about last month has found its way to my in box, and, even on vacation, I can't resist a brief update.

Right before Thanksgiving, when it was announced that Stanislaw Burzynski got off on a technicality, I discussed as part of that post yet another patient whose parents had been lured by the promise of a cure for the incurable. I'm referring to Amelia Saunders, an unfortunate little girl who had been diagnosed with an inoperable brainstem astrocytoma. Unfortunately, such cancers force us in the cancer field to face our limitations starkly. There was really nothing that could be offered Amelia other than palliative care. As is not infrequently the case, Amelia's parents discovered Stanislaw Burzynski and his antineoplaston therapy. As I (and many others) have pointed out, there is no convincing scientific evidence that antineoplastons are an effective treatment for advanced cancers, much less that they provide more hope for a girl like Amelia than conventional therapy. Indeed, Burzynski's ignorance of cancer biology and therapy is appalling, but he pontificates glibly with the arrogance of ignorance about how real cancer researchers and physicians just can't match his genius regarding personalized medicine.

In any case, Amelia's parents did the same thing all too many parents of children with incurable brain tumors have done and put their trust in Stanislaw Burzynski to the point of raising hundreds of thousands of pounds to take Amelia from her home in the U.K. to the Burzynski Clinic in Houston. For several months, Amelia did not seem to be deteriorating (at least not much), and the Saunders thought that their hundreds of thousands of pounds were being well-spent. What prompted me to mention them was that they had received an interpretation of an MRI from Burzynski in which the tumor appeared to be forming cysts, and apparently Burzynski had told them (at least, that's the implication I got from their Facebook post) that this meant that the tumor was dying. As I pointed out, what it probably meant was that the tumor was outgrowing its blood supply, as tumors are wont to do, and the center of the tumor was undergoing necrosis. This is a very common finding in aggressive tumors of many varieties, and unfortunately means little or nothing with respect to prognosis.

Later, Amelia's father lashed out at critics of Burzynski. As much as I could understand his pain, however, I can't help but note that it was not I who made his choices and Amelia's struggle public. As little as I wanted to upset either Mr. Saunders or his family, I was also worried about other children whose parents might be drawn by Burzynski's siren song to use up their life's savings chasing after a treatment with no firm evidence of efficacy and taking part in clinical trials that, unethically in my opinion, require the patients to pay huge sums of money to participate.

Earlier this week, the Saunders family posted this message on Facebook:

We had our meeting at Great Ormond Street yesterday and, sadly, they just don't have anything for us. We kind of knew this before we went - but wondered if they might have a trial that we could take part in. Unfortunately they don't.

They felt that Amelia is in the latter stages of the disease, and that what is called 'progression' has already started. This means her tumour is growing, the cancer is spreading and we don't have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.

The other thing to mention is that I know I posted on here a few weeks back that Amelia had cysts forming in her tumour. Sadly it just appears this theory was wrong, and thank God we didn't get our hopes up too much about this. Chantal and I have been accustomed to trying to make sure we get lots of opinions about things, and ultimately Amelia's decline clinically is the telling factor. Her right hand side is now pretty well locked in position and her speech is going. Other functions like swallowing are also beginning to fail.

We do still have the option of radiotherapy. Chantal and I will be talking about this over the coming days but it would be hard on Amelia and only a short term fix. We have to consider if this is the right thing to do or not.

I guess this is one of the updates I'd hoped I'd never have to write. Every day we have felt the love and prayers of so many thousands of people, and we have fought tirelessly every single day to make that miracle happen. Last week we took Amelia off her antineoplaston treatment and we won't be resuming it.

We are now faced with an uncertain future. No parent should have to say goodbye to their child. No parent should have to watch their child deteriorate as we do. Our beautiful little girl is being eaten alive and her body is failing her. I will probably never understand why we deserved this cruelty.

There really is nothing more to say. No child deserves this cruelty. No parent deserves this cruelty. Yet, this cruelty is inflicted upon some parents and children.

No doubt the Burzynski trolls will view my posting about this as somehow gloating. Nothing could be farther from the truth. This is one situation where I really would rather have been wrong and would have liked to have heard an update that the formation of cysts in the tumor really did presage its shrinkage and eventual cure. Unfortunately, I know a lot about tumor biology and clinical behavior, which is how I knew the true significance of this news. It would be a good thing indeed if Burzynski really did have the goods, if his therapies really could save children like Amelia, but they can't. Truth be told, neither could conventional medicine, but the difference between conventional science-based medicine and Burzynski medicine is that SBM tries very hard to be realistic, not to give false hope, and, most importantly, to weigh the risks and benefits of treatment. SBM does not tell parents that their child's tumor is shrinking away when in fact it is not. I know how difficult it is to accept when the victim is a child, but there really are painful and unfortunate times when palliative care is the best answer.

So once again we are left with an all too familiar story. There is a dying child whom conventional medicine can't save. The parents, desperate as any parents to save the life of their child, want to believe that Burzynski can save her when he cannot. They are willing to do anything, even raise hundreds of thousands of pounds to travel thousands of miles from their home and subject their daughter to toxic, unproven therapy. (Yes, antineoplaston therapy is toxic.) Nor are the Saunders any more gullible than average; no one knows how he will react to the cruelty of having his child develop a fatal brain tumor until it actually happens. That's why it is Burzynski, not the Saunders, who deserves scorn. The Saunders deserve our compassion as they face what is one of the most horrible experiences any human can be forced to deal with: The impending death of their child.

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This is horrible and I feel pretty much like when I re-experience my PTSD in my clinical trial (feeling like chest compression).

Alain

How sad, truly sad. My thoughts are with the Saunders family at this time. I wish them strength, and wish Amelia's remaining time is one of love and joy, and that it is free of pain and distress.

"The Saunders deserve our pity as they face what is one of the most horrible experiences any human can be forced to deal with: The impending death of their child"

I don't think they deserve pity; they deserve our compassion.

By Johann Podgorny (not verified) on 12 Dec 2012 #permalink

I have lost two sons, one(28) to cancer, the other (46) to heart failure.
Everything you said was heartfelt , thoughtful and professional.
You said "The Saunders deserve our pity."
Please rethink that phrase.

By John Coleman (not verified) on 12 Dec 2012 #permalink

Mr. Saunders, if you happen to stop by and read this, my heart goes out to you and your family. I wish so much that I could do something to help you and your daughter. All I have to offer is my hope that she will be as comfortable as possible.

As a father, I can imagine what the family has been going through & wish them the best for any and all time that they have left with their daughter.

Putting myself in their shoes, I know my wife and I would be desperate to do whatever would be necessary to maximize the chances for our child to either live or at least maximize the quality and quantity of life that they had left.

What I would not do, would be to turn to a charlatan that offers false hope and no real evidence that what he does is better than the normal progression of the Cancer.

This man is a monster & I know there is a special place in Hell for people like Dr. B.

Was Christopher Hitchens in Houston to get treated by Burzynski ?

By John Coleman (not verified) on 12 Dec 2012 #permalink

I've been reading here for a while and this is my first time posting here. This is a tragic story and I find it really hard to stomach that people like him exist and even worse, that others believe in him so deeply. The "alternative health" blogs are something else - I came to them as a new mom with a scientific background - thinking that they may have some reasonable arguments. The ones I've read the most - Modern Alternative Mama.com (and particularly her Facebook page) are really alarming - it's a bunch of anti-vax, anti-science, anti-medicine bunk, but it is her articulateness that is most depressing. After one post about Dr. Burzynski's clinic and the perceived snatching of parental rights to get whatever cancer care they can, I posted a rebuttal and was told in no uncertain terms that I wasn't welcome there and that I was clearly mainstream and pro-medical community. In short, these parents are in a special kind of hell that was bred by false hope, but the others out there who are so angry about their "non-normal" kids, well, I think they're just terrified - of what I don't know, but I do my best to bite my tongue now. Thanks for this service.

I only hope that Amelia receives wonderful palliative care and that the Saunders would stop asking themselves why they "deserved" this. They didn't. Nobody does. Ever. When my best friend lost her strapping 22 year-old to a sudden aneurism (an undetectable arterial defect was to blame) the one thing she said that made it bearable was that as an atheist she never had to struggle with why. The grief was (and still is a year later) horrible enough without there being some cosmic misdeed at the root of the tragedy.

By Pareidolius (not verified) on 12 Dec 2012 #permalink

John- Hitchens was in Houston to be treated at the MD Anderson Cancer Center. It offers some of the best cancer treatment in the world.

MedTek - thanks so very much.

By John Coleman (not verified) on 12 Dec 2012 #permalink

I'm not sure what the difference is between pity and compassion; that's probably a long conversation. But I'm impressed by your efforts to demonstrate how to be frank in the face of an awful situation. We all have to face this moment at some point, the moment of impending death--our own or that of a loved one. Quacks dodge this responsibility with bulls-t, and many commentators have the luxury of avoiding it altogether. Real doctors don't. It's part of the job.
But enjoy the beach, for goodness' sake.

By Fiona Gilsenan (not verified) on 12 Dec 2012 #permalink

Awful news. My heart goes out to Amelia and her family.

Burzynski is filth.

I don't understand the objections to the word "pity"- it is synonymous with "symapthy and compassion". And it is, of course, what we all should feel for Burzynski's victims, and their families.

By nancy brownlee (not verified) on 13 Dec 2012 #permalink

@Nancy - pity can have some negative connotations that I think we'd like to avoid in this particular case. All I feel is compassion for the family and absolute hatred for Dr. B & his staff - who offer nothing to these families but false hope.

A point that perhaps doesn't get made often enough is that we would love finding out we're wrong, about Burzynski, about reiki, about homeopathy, about any alternative medicine. We want miracle cures just as much as the next guy, we want to be able to offer hope where now there is none, and to save children and adults that now we cannot. We'd be ecstatic if it were proven we've been wrong about all manner of alt med's and that they're just as safe and effective as their proponents claim.

At which time the 'alternative' medicine would simply become medicine and we'd move on to address the next problem.

But there's that step in the middle--the one where it's proven we're wrong and the alt med community is right--that simply can't be bypassed..

Also from a purely scientific standpoint, it would be incredibly exciting to find that reiki or homeopathy worked. From such discrepancies come the big leaps in our understanding of the universe. Multiple Nobel Prizes would certainly result.

Too bad the evidence indicates that this is about as likely as finding out that the moon really IS made of green cheese.

Pity tends to imply that the pitier is above or superior to the pitied. Compassion implies a greater degree of equality between the two. A very minor point in what is otherwise a very difficult but important blog post. My compassion goes out to Amelia and the Saunders.

By Ian Duckles (not verified) on 13 Dec 2012 #permalink

Words are not enough. Deepest sympathy.

By Mark McAndrew (not verified) on 13 Dec 2012 #permalink

JGC -

We want miracle cures just as much as the next guy, we want to be able to offer hope where now there is none, and to save children and adults that now we cannot. We’d be ecstatic if it were proven we’ve been wrong about all manner of alt med’s and that they’re just as safe and effective as their proponents claim.

This. A truly non-toxic, safe CAM remedy for cancer, HIV/AIDS, degenerative neurological conditions etc. I would probably wet myself with sheer excitement, it would change my. life.

Burzynski is peddling the opposite, and it breaks my heart that he's raking in cash, hand over fist, for tormenting and deceiving the dying.

Forcing terminal cancer patients to schlep around Houston, rather than being at home, with friends and family, receiving palliative care.

Taking hundreds of thousands in blood money, that some people missed a meal for, or worked extra hours for, or tirelessly campaigned for - thinking their sacrifice was nothing, to save a dying child.

Just a very quick note to say thank you for the messages on here. This is clearly a very hard time for us and I appreciate your compassion. We will never feel like we did the 'wrong' thing, by the way.

Sadly, there is no wrong thing with brain tumours. I just want to see the day when there is a 'right' thing.

Take care

Richard (Amelia's dad)

By Richard Saunders (not verified) on 14 Dec 2012 #permalink

@ Mr Saunders...my heart goes out to you and your wife. Please know that we all feel your sorrow...losing a child is the hardest thing.

This is heartbreaking....

By Kelly M Bray (not verified) on 14 Dec 2012 #permalink

@Mr. Saunders, you didn't do the wrong thing. Burzynski did.

Your family, and most especially Amelia, are in my thoughts. May she feel nothing but peace and love from those she knows and those whose lives she has touched with her story.

Dear Richard,

I'm so, so sorry to hear your latest news, it’s utterly heartbreaking, and you have my deepest sympathy. How I wish that no-one ever had to go through this nightmare. As someone has already said, you have done nothing wrong, you are clearly devoted and loving parents who only ever wanted to do your best for your children. The person in the wrong here is Burzynski, who takes advantage of desperate people.

There is nothing anyone can say right now that can make the next step in your journey any easier but be proud that you made Amelia feel loved and happy all her life. No parent can ever do more than that.

I know that at the moment you are in shock at the speed of events, but one day, as I know from personal experience, you’ll be slightly comforted that your beautiful girl didn't have to suffer the worst of the dreadful trauma for too long, hard as it is for you and Chantal, and all those who love Amelia. I hope that doesn't sound insensitive but it is something my family often discusses and it makes it a little easier for us, though at the time it left us shellshocked and devastated, just like you are feeling right now.

I can’t, in all conscience, donate to YesToLife, because I believe they allow cancer quacks to thrive, but I will make a donation to The Brain Tumour Charity in Amelia’s honour.

I hope you find some peace and rest at the Hospice and that the sheer outpouring of love and respect that Amelia’s story has unleashed will hold you up and give you strength in the days to come.

By frozenwarning (not verified) on 15 Dec 2012 #permalink

@ Mr. Sauders: I have great empathy for you, your wife and Amelia.

My beloved son died eight years ago...different child and different medical problem, but we take great comfort for the joy he brought to us for the 28 years that we had him in our lives.

There is nothing that can ever prepare a parent for the loss of their child...nothing. In the days ahead just enjoy your precious child and beyond that, just remember the love you all shared.

I am terribly sorry for the Saunders family--and for everyone in Newtown as well--and I do not understand why this Burzynski cannot be stopped.

This story is also why I get angry at shruggies.

By Mom of Four (not verified) on 15 Dec 2012 #permalink

I am so very sorry that my daughter is currently being treated for her brain tumor by Dr. Burzynski. In fact, her very large brain tumor is almost completely gone. I will have to report her success very soon and this will unfortunately encourage others to seek treatment from Dr. Burzynski. You will try to say it was previous treatment, but she has never had any other treatment. I'm also very discouraged that our insurance is paying 100% of her treatment. This only tells me that the insurance companies are also being duped into believing this is an actual cancer treatment and more will start to pay in the future because they are finding that his treatment is so much less expensive than traditional cancer chemo and radiation. Oh boohoo whatever will I do. Okay, I'm so grateful and happy we went to Texas. Its not your fault you are ignorant. I'm sure you really couldn't care less about all these kids and thier cancers. I know you are just trying to write controversial articles and get people to respond because you are a looser. Why not jump in the gun control issue and leave Dr. Burzynski alone. Karma is a "b--- ch."

Winning,

I don't believe one single word of your post. Do you work for Buzynski?

By Marc Stephens … (not verified) on 22 Dec 2012 #permalink

@MSII

Winning could perhaps be your namesake's replacement?

"Winning" must be a Poe.

@Winning: yeah, I'm sure a grateful parent who sees his own child recovering sneers just that way on a post devoted to a child who is not recovering and is in fact dying. Yeah, I'm sure a grateful parent who sees his own child recovering says, "I’m sure you really couldn’t care less about all these kids and thier cancers." to a group that includes the father of the dying child. Yeah, I'm totally convinced of your bona fides.

Winning: if you do indeed have a child who has been ill, my accept my best wishes for your family.

Wouldn't you think someone posting as "winning" might know how to spell "loser"?

^ please accept my best wishes

Winning, not only do I not believe one word that you have written, I'm calling you a pathological liar.

Your *child* does not have a brain tumor that hasn't been treated with surgery and/or radiation therapy. Your insurance company is not paying for Burzynski's quackery and you're a real sicko.

As I am unaware if you know Amelia Saunders died today at 9:50am.

R.I.P

I wonder if "winning" if a true parent of a patient at the clinic, received the "tumor is dissolving - that's why it's growing" line yet?

I sympathize with those who critics Dr. Burzynski pain but it is sad to read that the critics of Dr. Burzynski do not point the blame in the right direction. Understand that the only way to beat diseases is to increase the efficiency of the immune system. Any treatment is to assist this result. The most important and missing part of the immune system is Glutathione. Different treatment suppose to help the immune system to win except chemo that actually destroy the immune system as a side effect of trying to destroy the cancerous cells. Dr. Burzynski's treatment raises intracellular Glutathione 200 to 1000% depend on tumor size. Dr. Burzynski at the time (70th to 90th) was pioneer who recognized that certain peptide are missing or low in individuals who have cancer. The limiting factor of Glutathione (GSH) is cysteine, A Peptide, which is a very fragile molecule and cannot be simply supplement or delivered into the cell, Dr. Burzynski’s treatment is dealing with this difficulty by using Atineoplaston. Recently there has been a breakthrough that can deliver cysteine into the cell quickly and abundantly. same results as Burzynski's treatment and perhaps even better, in accelerating Glutathione levels. It is inexpensive formula. 300% increase of lymphocytes Glutathione in healthy individuals was measured in clinical study, double blind cross over. I stumbled into this webpage and see the animosity against Dr. Burzynski, unless you get paid by the big Pharma, you guys need to ask this: if Dr. Burzynski only saved one life using his invention, why was this not investigated and developed into treatment. Why did the government tried to stop him for almost 40 years? there is many evidence that his treatment is beneficial, at least in some of the cases when No other "conventional" treatment offered any help. Most or the critics refer to the cost which is not much different and most of the times less expensive that the cost of “Conventional” treatment (who pays for the treatment is another subject but the cost is there). Now the issue of cost for raising Intracellular levels of Glutathione is solved.
If you want more information, connect with me via email (if it is published) or via Facebook, Ronen Brown Los Angeles.
Best health to all and live your life to the Max.

By Ronen Brown (not verified) on 11 Mar 2013 #permalink

@Ronen Brown, "if Dr. Burzynski only saved one life using his invention, why was this not investigated and developed into treatment."

We've been asking that ourselves, many many many times on this site. Why hasn't Burzynski published the results of his sixty or seventy clinical trials?

@Ronen Brown

Most or the critics refer to the cost which is not much different and most of the times less expensive that the cost of “Conventional” treatment

The point is not the cost, but rather that they have to pay to participate in what are supposed to be clinical trials. Conventional treatment is expensive, as well, but insurance covers a good chunk of that. Yes, there may also be out-of-pocket expenses, as well, but the main point is that these patients are receiving an experimental drug. Because of that, it is unethical to charge them for it.

@Ronen Brown - you made a number of claims and I'm sure people would be interested in seeing the scientific studies that support those claims. In particular:
- the only way to beat diseases is to increase the efficiency of the immune system
- The most important and missing part of the immune system is Glutathione.
- Dr. Burzynski’s treatment raises intracellular Glutathione 200 to 1000% depend on tumor size.
- there is (SIC) many evidence that his treatment is beneficial

You also mention that "Glutathione in healthy individuals was measured in clinical study, double blind cross over." While I'm sure that's interesting, you don't mention what, if any, significance that has.

You also fail to mention whether it's been demonstrated that glutathione levels have an impact on cancer.

If you could provide more data, it would be appreciated.

By Mephistopheles… (not verified) on 12 Mar 2013 #permalink

@Ronen Brown

Understand that the only way to beat diseases is to increase the efficiency of the immune system. Any treatment is to assist this result.

It really isn't that simple. For example you do see an increased risk of cancer in transplant patients who are given immunosuppressant drugs, but still only a minority get cancer, and some but by no means all cancer patients who are given chemo and radiotherapy develop further non-metastatic cancers, so the immune system is clearly not the only or even the most important factor in carcinogenesis. Once a tumor has arisen, the immune system is unlikely to be able to eliminate it, no matter how efficient it is, since it is composed of the patient's own cells, and will not be recognized as foreign.

Also, there are many diseases that are manifestations of an over-active immune system, such as allergies and auto-immune diseases. A damaged immune system may lead to illness, but so may an overactive one. Consider how widespread the use of anti-inflammatory and corticosteroidal drugs is, both of which work by reducing aspects of immune response and are highly effective in many conditions.

The most important and missing part of the immune system is Glutathione. Different treatment suppose to help the immune system to win except chemo that actually destroy the immune system as a side effect of trying to destroy the cancerous cells.

If only it were that simple. In some cases glutathione has a role in promoting cancers and may make chemotherapy either more or less effective. To quote from the linked abstract:

However, by conferring resistance to a number of chemotherapeutic drugs, elevated levels of glutathione in tumour cells are able to protect such cells in bone marrow, breast, colon, larynx and lung cancers. Here we present a number of studies investigating the role of glutathione in promoting cancer, impeding chemotherapy, and the use of glutathione modulation to enhance anti-neoplastic therapy.

By Krebiozen (not verified) on 12 Mar 2013 #permalink

'Understand that the only way to beat diseases is to increase the efficiency of the immune system. Any treatment is to assist this result."

I'm sorry, but that understanding is quite simply false. Antibiotics don't 'beat' infectious diseases by improving the efficiency of the immune system but instead by targeting the pathogen biochemically. The drug cocktails used to 'beat' AIDS don't do so by improving the efficiency of the immune system but by directly targeting viral replication. ACE inhibitiors don't treat hypertension, diabetic nephropathy, renal failure, etc. by improving the efficency of immune system but by directly inhibiting angiotensin converting enzyme. Taxol doesn't improvehe efficiency of the immune
system but instead by stablilizing cellular microtubules and interfering with mitotic division. (I could go on, but I trust you get see now where your argument fails from the start.)

Cysteine, by the way? An amino acid, not a peptide.
And If Burzynski's antineoplastins actually do raise glutathione levels in patients suffering from cancer 200 to 1000% (and I note you've offered no evidence this is the case) what in the world is he doing when co-administering standard chemotherapy and either antineoplastins or their precursor phenylbutyrate in some of his protocols? Elevated glutathione levels in cancer cells has been found to be protective, conferring resistance to a number of standard chemotherapeutics. ( Balendiran et al, "The role of glutathione in cancer". Cell Biochemistry and Function, 2004: 22 (6): 343–52))

if Dr. Burzynski only saved one life using his invention, why was this not investigated and developed into treatment.

An excellent question. Why indeed has Burzynski not bothered to actually do clinical trials and publish the results? Are you expecting somebody ELSE to do it just because some guy claims it works with no support whatsoever?

Why did the government tried to stop him for almost 40 years?

What people have tried to stop is him making unsupported claims, and selling an unapproved drug based on them, for personal profit. Nobody is trying to stop him from actually doing the science to show that it works - he just doesn't care.

there is many evidence that his treatment is beneficial, at least in some of the cases when No other “conventional” treatment offered any help

If such evidence actually exists, HE NEEDS TO PUBLISH IT.