You may have heard of Stanislaw Burzynski and his Antineoplaston treatment for cancer. If you haven’t, I highly suggest poking around a bit, even just a simple Google search will do. Though please go beyond just the Eric Merola movies, which are clearly from the perspective that the treatment is proven and that evidence is not necessary at this point. Conversely, don’t just go with some of the more curmudgeonly bloggers such as Orac, though the latter does tend to give some very good scientific information.
Now, even if you didn’t immediately go out and research furiously, I am going to assume you have a general idea about Burzynski, the Clinic, and his ANP (Antineoplaston) treatment.
The main reason I am putting this together is to try to give a little bit of perspective on efficacy. Not just of Burzynskis treatment, but a little more information on DIPG. I am not a doctor; I do not play one on TV, and as far as I can remember I never even “played doctor” as a kid. So please excuse (and correct) me if I have gotten some piece of medical information completely and utterly wrong. This is indeed my take on the information I have found. Also take note that you may think to yourself, “Hey, these sound like anecdotes! Doesn’t he scream about wanting non anecdotal evidence?”. Yes, some other persons self, I indeed do want objective evidence. However, since most of the support for Burzynski comes from only anecdotal evidence, I would say this is a fair riposte, as the bar has been set to Hermes Conrad levels of limbo skills, and I feel like just shuffling over it today.
One thing that has been told to me, usually in ALL CAPS, when discussing a lack of published studies by Burzynski versus the claims made (30-50% success rate with DIPG) is that the only proof anyone needs are the videos of people who have survived INCURABLE (see, again with the caps, are people breaking these buttons or something?) cancers. Cancers that are incurable, as in they have a 100% fatality rate and therefore anyone diagnosed with one who is still alive was cured by this particular treatment. I have heard from other sources that the prognosis for DIPG is “virtually zero”, “practically zero”, and “pretty much zero” often enough that I began to wonder why everyone felt the need to throw in a qualifier. So I took a quick look at some stories about DIPG patients.
First, let’s talk about DIPG, or Diffuse Intrinsic Pontine Glioma. It is a nasty cancer, forming at the base of the brain near the spine. The “diffuse” portion of the name means it is not one lump that can be easily removed, but several pieces that can be intertwined with healthy tissue. This makes it very hard for surgery to remove the all of the cancer. The basic rate of survival put one year survival rates at 30%, two years at 20% and 3% for three years, with 5 year survival rates being “virtually”, “practically” zero.
I thought of this as I saw this study published by Burzynski. There really aren’t many studies he has put out, but there are a few Stage II studies like this one, though in the past I haven’t been able to see the full results beyond an abstract. Burzynski supporters claim 30-50% “success” rates with DIPG, which seems sketchy seeing as there aren’t a lot of studies to back it up. He does seem to have quite a few patients who appear to be cured, which is where a lot of his support comes from; patients with INCURABLE cancers have gotten the ANP treatment and are alive today. If the only survivors of DIPG are those that got ANP, it seems like some fairly strong evidence, even without actual studies to back it up, right? While looking up some statistics, I happened to run across something amazing.
JUST… SIMPLY… AMAZING…
I found a list of DIPG survivors, not just past the three years, but 5 years to 10 years to an astounding 14 years! What was the preferred method of treatment? Mostly chemo and radiation. Nasty stuff to be sure, but this is a nasty disease we are talking about. The outlier is actually 10 year old Connor, who was diagnosed at 5 weeks (yeah, weeks) old, his parents were told nothing could be done, so they did nothing. He celebrated his tenth birthday, still with a DIPG tumor that seems to be somehow content with the status quo. This isn’t just a couple of kids either, there is Annabelle, an 11 year old girl who has survived nine years after getting immediate radiation (as well as some homeopathic stuff I have noticed comes up a lot lately). Bridgett was a 6 year survivor who died at the age of 16 after getting radiation and then naturopathic treatments. Dasia is a nine year survivor, who had radiation therapy and chemotherapy (Iressa). Emily has survived at least five years, possibly six though her mother has not updated her page recently, on radiation therapy. JohnRobert has survived for 7 years, though his Parents did not spell out his particular treatment. The coup de grace is 19 year old Nikki, who was diagnosed when she was four years old, got chemo and radiation therapy and through a long 15 years has survived her DIPG.
So that’s seven kids, all diagnosed in the past 10 or 12 years, who have survived the INCURABLE cancer past the expected time. There were more kids in the initial list I found, and some of them had survived longer, sometimes several years longer, than expected but then succumbed to their illness. I didn’t feel right including them, even though they did “beat the odds”, though I did include Bridgett as 10 years is a little more than beating the odds. There were some others that did not have a good enough reference or were not clear enough on having DIPG or some other brain cancer, so I did not include them. I wanted to concentrate on this one form of cancer for now.
Suddenly, hearing this disease called INCURABLE (seriously, let’s just, turn caps lock off for a day… just see if it can happen) seems a bit disingenuous. It may be rare, certainly, and the chances are still not good for anyone diagnosed, but there are some kids who do survive it. Some kids survive it with more traditional, though probably still “experimental” methods. One kid even survived with nothing. Had Connor taken ANP, homeopathy, seen a faith healer, or even had chemo, then there is a good chance someone would be pointing out that he is the proof for that particular treatment. These kids aren’t even proof that chemo and radiation cured them, you really cannot prove efficacy from a few examples, but they are proof that this disease is not 100% fatal.
This is why there is pressure on Burzynski to publish more of the 72 trials he has started. Patients are allowed his treatment, and charged a lot of money for it, because they are listed as FDA trials. Just bringing out some kids who did not die of this horrible tumor is proof that they did not succumb, not that one particular treatment they may have had (and many of them have had more than one) “cured” them. If any one of the seven kids listed above had been on ANP at any point, they could be used as “proof” even though we have the knowledge that they have survived without that particular treatment, including now not quite as young Connor who had a tumor that for whatever reason decided to just chill. There is also the problem of misdiagnosis, or that there are some DIPG tumors that are considered nonmalignant. Just showing us survivors doesn’t tell us how many did not survive, which is really-REALLY important to figuring out the “cure” rate. If Burzynski brings out 10 children who have survived DIPG, but we found out he has treated 1,000 in his 35 years, then really he would have a .01 success rate, which may not be statistically significant, or above the background noise of kids like Connor. I’m not saying this at all shows that ANP has not helped, even partially, just that without all of the information we have nothing to go on. We especially have nothing to go on once it comes to light that yes, there are kids who survive this, even ones who have not had the miracle cure.
Without studies to back it up, it is also a little odd that patients, and internet CAPS LOCK fans of all stripes, keep quoting cure rates in the 30-50% range. In the couple of DIPG studies I was able to dig up, and I am concentrating on DIPG, for the ANP results just as I did on the non ANP survivors, for 5 years was 17% and 5.6%. The 17% comes from a study of 12 patients, though only 10 were “evaluable”. 33.3% survived 2 years, and 17% survived more than 5 years from diagnosis, one of which was on ANP for 5 years and the other for 4. Ok, let me point out that while only 10 were evaluable, the statistics come from all 12 patients, as 17% of 12 is 2. So here we have a respectable percentage, but with fewer patients to start with, there is more of a chance to run into a Connor or a Dasia who is an outlier of the norm. The other study, mentioned above, starts with 40 patients but only looks at 17 of them. I am really not sure why that is, and it may just be a medical study quirk I am unaware of. In this study, we see a 2 year survival rate of 11.8% and a five, ten and fifteen year rate of 5.9%. 5.9% of 17 is one, so one patient survived beyond the usual 5 years that most patients are virtually never expected to survive. 1 is 2.5% of 40, by the way. Of course, this one patient could again be an outlier, like a Connor, and I have heard but have been unable to confirm that 2 patients in the study had the usually nonmalignant version of DIPG, adding to the suspicion that this is an outlier result.
This is why the studies are more than “getting the paperwork together”. From published studies we see only three long time surviving patients. Just to be clear, I am not including the links to studies that were not published but actually abstracts spoken about at a conference, that doesn’t count as peer reviewed or even published. We know there are more ANP treated DIPG survivors, but we do not see them in the studies, so it is hard to know if they are 30% of those treated, 10% or .0001%. We also don’t know, unless some good phase III studies are done, if this works better or worse than traditional treatments, since we have seen above that they do appear to possibly work with some of these kids.
Still, the 30% figure may be something I can clear up. I have noticed that in both studies, CR (complete response) and PR (Partial Response) or a combo of both has been noted as being around 30%. Now something you may not know, and I certainly did not until I stumbled on it, is that CR is not, as I would think intuitively, a complete regression of a tumor forever with it not coming back. According to the studies, and I assume this is normal for all cancer studies, it means “complete disappearance of all contrast-enhancing tumor(s) on imaging studies for at least 4 weeks and receiving no corticosteroids”. Partial response is more than 50% reduction for four weeks. This may explain why I see so many people refer (insert caps lock joke here) to the success rate as 30%; they are making the same mistake I did and assume complete response (CR) means something that it just does not medically. These tumors can grow and shrink for many reasons, and I have read cases of both survivors and non survivors who went through bouts of tumor changes that uplifted and shattered the families. I certainly cannot blame any family of a child diagnosed with DIPG hearing 30% and “Complete response” and clinging to that hope. I cannot say what lengths I would go to or what lack of evidence I would care about if it were my family member, but the rest of us can care about what the realities are.
Hopefully this has given at least a bit more perspective on why there is resistance to Burzynski as far as evidence goes. Those who are asking for more evidence, and will not accept as evidence internet videos of patients(some of whom have since died) are not working for Big Pharma, and they are not blind or uncaring for those who think they would be dead without the clinic, they just do not accept as evidence a few anecdotes without the rest of the information. This is the same way that you shouldn’t trust a weight loss add that shows two people who lost 60 pounds in one week, especially if there are 300 people just out of camera view who have lost none on the program. All we are asking is to move the camera a little to the left for us, to see the shining success stories in context.