A very sad bit of news has come to my attention, courtesy of a reader. Billie Bainbridge has died of her brainstem cancer.
Regular readers might remember this unfortunate young girl, who was diagnosed with a diffuse intrinsic pontine glioma of the brainstem last year. The tumor was inoperable, and, unfortunately, Billie's parents turned, as all too frequently happens, to a dubious doctor by the name of Stanislaw Burzynski. Dr. Burzynski, as you will recall, is a doctor in Houston who claims to have discovered and purified anti-cancer compounds from urine (which he dubbed "antineoplastons") that he now synthesizes and uses to treat cancer with no convincing evidence that they have anticancer properties in patients, billing them as "natural" and, above all, "non-toxic." Whether they are any more "natural" than something like angiostatin is arguable, that they are not non-toxic is not. He also charges his patients huge sums of money to be on clinical trials that somehow never finish accruing and are almost never published in reputable journals. He also peddles what I like to call Personalized Gene-Targeted Cancer Therapy for Dummies because it's clear that he doesn't know what he is doing and is putting the cart before the horse. Of late, Dr. Burzynski has rebranded his antineoplastons as being the product of the metabolism of an orphan drug.
The reasons that Billie Bainbridge came to my attention are two-fold. First, when a skeptical blogger named Rhys Morgan criticized Dr. Burzynski and cited Billie's case in particular, the result was the Burzynski Clinic sending its utterly inept PR flack to issue vacuous legal threats. Hilarity ensued, and the Burzynski Clinic disavowed this flack but did not disavow his methods. The other reason is that Billie is emblematic of what Burzynski does. Her parents raised hundreds of thousands of pounds to take her to Houston to be treated by Burzynski, in the process recruiting some famous U.K. entertainers to stage benefits to support that treatment, a process I've referred to before as kind-hearted strangers being hit up to support woo. There are so many issues: Desperate parents and relatives scrambling to raise money from kind-hearted strangers who don't know that what they are supporting is dubious at best and quackery at worst; the cult of personality that Burzynski has cultivated; and, above all, why the Texas Medical Board and the FDA are seemingly powerless to stop him. Meanwhile, despite the picture of Dr. Burzynski being painted by his admirers as the only one who can save these children, despite his claims that he can do better than conventional therapy, his patients continue to die.
Patients like Billie Bainbridge.
Billie's death is a tragedy, just as all deaths of children are. In our society, children aren't supposed to die. Old people are. And, in fact, the deaths of children, which used to be common before modern medicine drastically decreased childhood mortality, mostly due to infectious diseases, are now thankfully very uncommon. This magnifies the grief and sense of loss when a child like Billie does die. So much life, so much promise, all cut ridiculously short by the vagaries of biology. Our hearts bleed for the parents, because losing a child is rightly considered by most people to be the worst loss a person can endure.
Certainly, the false hope that Burzynski gave, coupled with what he put the family through to raise exorbitant sums of money for his woo, didn't help.
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Awful. My heart goes out to Billie's family for their loss. I can only hope that somehow Burzynski's scam can be stopped, and that the families can instead direct their efforts toward making their children's lives the best they can be.
Orac
I wonder what your thoughts are on another British case that rose to prominence at about the same time as Billie Bainbridge.
She seems to be doing rather better;
http://www.hopeforlaurafund.co.uk/blog/item/may-2012-mri-scan
You've expressed doubt about the interpretation of brain scans by Burzynski and his supporters/victims, but do you have any idea what is going on here?
Cheers
BSM
Really. it's so depressing. a child with an inoperable tumor, with a low to nil chance of survival, who might have been made comfortable or at least shown a few good times before the end, taken to the cleaners by a quack. I understand her parents desperation. The overwhelming feeling of the need to DO SOMETHING! But unfortunately medicine has not advanced far enough that an inoperable tumor can be cured. Burzinkski hasn't got the answer either. What's worse, Burzinski probably knows full well that he hasn't got anything, and he's charging an arm and a leg for hopeless treatments. Our only hope at this point is to so publicize his scam as to make people shy away from it. So thanks for carrying the fight to the enemy, Orac.
@bsm @orac I don't believe Dr. Burzynski claims that antineoplastons can cure everyone. Very sad for Billie and her family; cheering for Laura.
Best,
Marg
Marg
The problem with Burzynski is that he has published no well-controlled data so your excuse is a permanent refuge for him. We cannot know for sure, but Orac and others have given us plenty of reason to doubt the plausibility of his claims and his methods of fund-raising intensifies the ethical concerns.
Burzynski has no right to claim he can cure ANYONE.Dox or STFU, as the kids say.
Does anyone know what's happening with the postponed Texas Medical Board hearings?
The problem, Marg, is that while Burzynski may not have claimed antineoplastins can cure everyone he has claimed they can cure some people, while failing to produce any evidence that latter claim is valid. (All while unethically charging truly desparate people exorbitant sums to participate in his 'trials'...)
This is heart breaking. Poor little thing. I hope her family have the strength and support they need in their grief.
If Burzynski has the goods, let him put up or shut up. Show us the evidence or stop selling your crap to desperate patients at prices that amount to robbery.
"almost never published in reputable journals" implies that it isn't "never". When was he published in a reputable journal?
My heart breaks for her family and friends. There is something especially painful in the loss of a child. I understand the "wanting to do anything," I really do. The poor family and all those who became involved with the story, willing to do anything to help and ... scammed. Just terrible.
It would seem that despite this sad news Antineoplastons do seem to have an anti-cancer effect and isn't a 100% cure all as also explained by the clinic. @orac are you able to explain your thoughts on www.hopeforlaura.co.uk response with her GBM no longer enhancing (bearing in mind when you last debunked her scan results you referred to the wrong older scan images) and also another English patient with huge reduction www.teamhannah.com both have had radiation (which had no effect) and have had either very little or no chemo? Interested to know your thoughts on these people defying the odds.
On the plus side, I'm sure Dr Burzynski was able to buy a fantastic house with the money.
@JamieT
Anecdotes prove nothing. The fact that one patient seems to be doing better is not evidence that antineoplastons actually work. You claim that "radiation didn't help" and there was "little or no chemo," but both of those are mainstream treatments and there is often a bias to credit the woo rather than the mainstream treatment.
By the way, how are antineoplastons anything but chemo? You should read Orac's other threads on the topic, you might learn something.
Citations needed.
For the sake of argument, let's assume this is correct and entertain the thought that antineoplastins do have a a measurable and significant anti cancer effect. The first question which leaps to mind is how does antineoplastin therapy, alone or in combination with other therapies, perform as compared to the standard of care alternatives currently in use?
And assuming that it does perform better or as well, the next obvious question is why hasn't Burzynski published the evidence demonstrating this? After all, he's been conducting his 'clinical trials' for decades.
While I'm not Orac, this paper may shed some light on that question:
"Radiation Necrosis Versus Glioma Recurrence: Conventional MR Imaging Clues to Diagnosis" Mullins et al. AJNR 2005 26: 1967-1972
It may be that the enhancing lesions they were seeing was actually necrosis due to the radiation she received. You would expect, in that case, that the enhancing lesion would fade over time as the necrotic tissue was reabsorbed by the body. Note that the cancers discussed in the paper are the same type of cancer Laura has. On the other hand, the paper was written in 2005, so it is entirely possible that this has already been accounted for.
As I pointed out last time you made this accusation, Orac's post was written several hours before the new scan images were released - even allowing for the time zone difference. At the time he wrote it, the older scan images were the most current images. {Also, I note that the site repeatedly makes the claim of a % reduction in size since the October scan, when the % reduction in size is actually since the September scan, so you need to add 6 weeks to all of those claims-ie, "77% reduction in 18 weeks" is really 77% reduction in 24 weeks. I don't know if that is a lie from Burzynski to make it seem like the tumor is shrinking faster than it really is, or just a misunderstanding on Laura's part.}
Did some more digging. Found articles as recent as this winter that claimed that distinguishing radiation necrosis from tumor recurrence is still "challenging" even with the most up to date MR techs, which Burzynski does not appear to be using (based on the Team Hannah vlogs).
I can speak from my daughter's experience about the difficulties in interpreting post-op and post-radiation MRI. She was treated for an ependymoma in late 2009. She went through 33 radiation sessions and the follow-up MRI showed enhancement along the tumor bed and a small enhancing area at the superior aspect of the surgical site. Radiologist at Seattle Children's couldn't determine whether it was tumor.
At follow-up surgery, the enhancing areas on the tumor bed were a post-radiation "rind" of necrotic tissue and the small nub at the top was in fact, a ball of residual tumor.
@Kevin
"in proton beam–treated patients with new enhancing lesions on serial scanning" patients discussed don't fit this criteria.
"Orac’s post was written several hours before the new scan images were released"
actually this is incorrect, the scans Orac debunked were older scans from 6 weeks previous to the news she had 36% reduction. Hope for laura have never released any scan images showing the 36,56 and 77% tumour reduction at all if you check the blogs. They also claim to have both Burzynski radiologists and the UK private radiologists producig the same results.
What makes you say that? Everything I can find on their blogs are consistent with that criteria, though I don't have confirmation. Again, it's offered as a possibility, since proton-beam therapy is the standard of care radiotherapy for gliomas.
So Orac is supposed to be able to see into the future? Or do you now agree that what he "debunked" are not the "wrong older scans"? They were the most current data available at the time he wrote the post.
@Badly Shaved Monkey, regarding the MRI scans on Laura:
From the website:
My interpretation of the scans would be that the "white area" around a tumour is peritumour oedema, which may show as a bright density with contrast enhancement during the vascular phase of the scan. This is common. The primary way to reduce cerebral oedema around a tumour is specifically to give high dose steroids such as dexamethasone, which it appears Laura received appropriately.
The fact that the resolution of oedema consequent to steroids is being sold by the clinic as a "reduction" in tumour size is a likely misdirection. I may be wrong, but as we have seen before, radiology reports from the clinic do seem to be unreliably and over-favourably rerported.
PS I also see they promise to post the images on the blog.
I thought I'd let my fellow "Burzynski watchers" know about some interesting, must-read posts on The 21st Floor website from a Burzynski parent, Ric Schiff (I believe he was featured in the infomercial). He posted four comments on the four most recent Burzynski articles here:
http://www.thetwentyfirstfloor.com/?tag=burzynski
He's been defended and recommending Burzynski for 16 years and makes all the usual rambling arguments for the lone maverick genius misunderstood persecuted crook.
There are already a couple of very articulate responses.
Schiff includes his personal e-mail address on each post asking for anyone with questions to contact him. Maybe we can convince him to come over here and comment, or "refute" Orac's posts?
By the way, among Schiff's ludicrous statements he says that oncologists generally graduated at the bottom of their classes and couldn't get into a more "favorable" aspect of medicine.
Another piece of very sad news from the UK - Supatra Adler, who was also being treated at the Burzynski Clinic, has passed away http://supatrascancerfight.blogspot.co.uk/p/home_10.html
Her parents previously blogged about the extortionate and unexpected costs they had to pay for her treatment http://supatrascancerfight.blogspot.co.uk/2011/10/info-for-new-burzynski-patients.html
And looking at the links in the bottom left, 4 of the seven patients Supatra's parents linked to have passed (inluding Billie), with another one "needing a miracle" as of June 5th (and possibly passing by June 7th, but I can't tell if "Ricky" is Olivia's father).
Another tragic end, although not unexpected, to a Burzynski story: little Luna Petagine died this week. She was recently featured in a segment of the Great Ormond Street Hospital documentary series, as doctors struggled to reverse the damage Burzynski's high-sodium treatment did to the poor little girl.
http://www.watfordobserver.co.uk/news/9867794.Family_pays_tribute_to_li…
Marc, is there more somewhere? I didn't see reference to the sodium, but it is Friday and I am tired.
Agashem,
My comments referred to a scene in the documentary. Luna's parents are shown discussing the aftermath of the Burzynski "treatment" with their own oncologist at Great Ormond after they returned from Houston.
The doctor's eyes almost popped out of his head when he found out what Luna's sodium levels were as a result of the antineoplastons. He implied that levels like that are usually fatal.
I watched the documentary online, but the BBC's server blocked me because I'm in Canada. I found it on YouTube somewhere. Give me some time and I'll post the link and the time of the scene in question.
OK, the entire show, which is worth watching, is here:
http://www.youtube.com/watch?v=k-qS5lR65ug
Luna's story is told in three segments. The first segment starts around 28:10, pre-Burzynski.
Burzynski enters the picture at 39:00.
The "sodium scene" starts at 52:50.
Watch the doctor's face when he's told the sodium level.
That doctor is a saint for how diplomatic and compassionate he was, even though it's obvious he believes Burzynski is a complete and total waste of time and money. His frustration at having his advice ignored is palpable.
It was so hard to watch this a few months ago, and even harder to watch it again now knowing she died this week. Make sure you have some Kleenex handy.
Poor Luna. It was devastating to watch her staggering around, drooling and constantly urinating. She should not have had to spend her last few months like that.
Olivia Bianco, another Burzynski patient, passed away June 20th.
With Luna's passing, 6 of the 7 patients linked to by Supatra Adler's parents (herself a deceased Burzynski patient) are dead. Only Laura is still alive.
Poor Luna - I read her website for a bit, but got so angry as it continued. :(
My thoughts are with the many who loved her as they mourn her loss.
In many years of measuring serum sodium on thousands of patients with varying levels of illness, I have very rarely seen a sodium that high and few of those patients survived. The only occasions that spring to mind are an unfortunate incident when a patient was given a massive overdose of sodium bicarbonate because of a malfunctioning blood gas analyzer and a doctor incapable of reading an "out of order" sign (she died), renal dialysis patients, whose electrolytes sometimes used to go badly out of kilter (they are managed better these days) and patients post MI who tend to be dead when I phone the doctor with the results. Sad and shocking.
I just noticed this on the Burzynski Patient Group website.
Not only is Eric Clinton Merola making another infomercial shilling the doc's services, but they're appealing for donations to make that commercial!
Note that some of the funds raised will be used for a "hired public relations firm" (I guess my namesake won't be involved...)
I know that Merola was in England a few months ago interviewing some of the patients that W. Kevin alludes to. I imagine they're going to have to do some editing or script revisions with all this bad news of the recent tragic deaths.
https://www.burzynskimovie.com/index.php?option=com_content&view=articl…
If I understand the video correctly, they had the girl's disease stable in the UK, but the parents, lured by promise of "cure" vs. "stable disease," raised the hundred thousand pounds and went to Burzynksi. I feel terrible for the parents - they must be so frustrated (and worse) with what their trust in a few anecdotes and a supporters' website, etc., may have cost them in the end (I realize that stable disease does not mean it will stay that way, but stable compared to where it was after surgery was a major improvement).
The poor oncologist. You could see his discomfort when they made that choice and his telling reaction to Luna's labs after her first treatment.
I wonder if there is any possibility of the family realizing that Burzynski's treatment caused the reaction and speaking out against him at some point? It seems doubtful since at the end of the segment they were hoping to get treatment to stabilize her enough to try Burzynski again.
Something else came to mind while reading about Luna and seeing the video. Parents usually search for reasons or answers when their kids get sick, looking for things they might have done wrong that can make them feel guilty or responsible.
Most of the time, of course, there's nothing to point a finger at. Kids get sick just because.
In Luna's case, however, her mother believes the cancer was caused by a silicone breast implant that burst while she was pregnant with Luna. I'll find the references and post them, and I think it's all hogwash, but can you imagine the extra guilt her mother must have inflicted upon herself?
Maybe that's why they were extra-willing to try anything, even after the GOSH doctors told them Luna was stable.
Note the father never said one word in all the scenes in the film; it was mom in charge the entire time.
Here's a story from this past winter from The Sun, where Luna's mom expounds on her theory of the burst breast implant. I correct myself on two points: the implant burst while she was breastfeeding; and it was a PIP (?) implant, not silicone. Apparently they were controversial and have been withdrawn from the market. Mom went from an A cup to a D, so the implants must have had considerable mass.
After the grief subsides a bit I sense the family will launch a major lawsuit against the implant manufacturer.
http://www.thesun.co.uk/sol/homepage/news/4105608/Burst-PIP-implant-gav…