Burzynski Patient Maria V.’s Story

After reading so many stories of so many patients and their families, you learn a vast empathy. Every time you start a new patient story, if you are not carried along by the power of the emotions attached to every decision that these families make, something is wrong with you. This is a story of a magnificent woman who died too soon. She she was young, only 50, but her children were almost all grown and as you read her story, you have the sense of a major character being yanked unceremoniously from an otherwise complete narrative.

Maria V.‘s daughter kept a blog of their experiences, starting with their trip to Burzynski Clinic. Maria had stage 4 uterine leiomyosarcoma, a very rare cancer which had metastasized to her lung, liver and bones.

Maria and her daughter flew into Houston on 13 Nov 2011. On the 14th they are at the Clinic, and it’s interesting to get a number of close-ups of the  photos adorning the walls of the clinic. They are completely self-serving. One is of Albert Einstein, and features the quote: “Great spirits have always encountered opposition from mediocre minds.” Another one is of Louis Pasteur and it reads, “Nobody knew his name when he got started either.” This difference is that both Einstein and Pasteur, of course, published their results. Pasteur was a master experimentalist. Einstein made extraordinary claims who won over the scientific community when others were able to observe what he predicted. Burzynski, of course, is neither. Most doctors will not work with him, and despite his 60+ clinical trials, he has only ever finished one (a completion batting average of .015). He’s published none of them. When you consider how many patients have paid to be included in those apparently unpublishable trials, you realize the magnitude of what is happening in that place.

Right away, we get a sense of what is going on, as the family is in the waiting room, where they met a patient from Georgia with bladder cancer:

She sat down next to my Mom and in true [V.] fashion my Mom looked over at her and asked, “What’s your problem?” she said it in a sweet way of course. The lady proceeded to tell us about her hardships and was soon called into the Dr.’s Financial Dept. When the woman came out, my mom noticed right away that she was upset, the woman’s brother went to get their car and when he left the woman burst into tears, right away my mom ran to her and started comforting her and telling her it would be ok. I swear it took all the strength I had not to burst into tears at that very moment! It was like watching two injured puppies console each other. I could hear my Mom whispering to her to be strong and I had to look away because one of us had to keep it gangsta.

Later my Mom told me the woman was crying because she couldn’t afford the treatment.

We hear that the family can afford the treatment but there’s this:

Today was hard but filled with hope. The doctors definitely had a plan of action and offered us options. I look forward to the days that follow. I know there are people out there that think we are crazy for spending our entire life savings on this without a guarantee, I used to be one of those people but when the person you Love most on the planet is told to go home and die you will go to any lengths and spend any amount of money for another shot.

The next day, Maria begins her “gene-targeted therapy.” This is an untested chemo cocktail based on a blood test which is the genetic equivalent of palm reading:

On a technical note, Mom began her first gene targeted therapy today. She’s taking a medication called PB, it obviously has a longer name but that’s the acronym,that attacks tumors on a cellular level and makes it easier for other medications to kill and break up the tumor. Her new doctors are approaching her disease with gene targeted therapy. Their goal is to stop and shrink her tumors. Once they get her blood and caris results back they will choose medications that match up with the markers present in her blood and design a specific treatment just for her. I have a good feeling about this.

Burzynski’s definition of gene-targeted therapy is so broad that even eating an orange could be considered a type of gene targeted therapy, because metabolism reacts with the products of gene expression. Of course, no matter how “targeted” it is supposed to be, you always have to buy Burzynski’s phenylbutyrate. Of course there is always a cheaper alternative available through Ucyclyd Pharma in Hunt Valley, but patients are apparently encouraged to buy it through the in-house pharmacy.

On the 16th we get the photo of the exterior of the clinic, the same one that so many patients have put on their blogs. And then money becomes an issue, including the bizarre practices of forcing patients to buy in house meds:

The very first drugs they prescribe you at Burzynskis you have to buy there, after that you can get prescriptions filled by your local pharmacists and hopefully your insurance can pay for it. Today, my Mom was given an injection for her bone metastasis, One injection once a month is, are you ready for this, brace yourselves, 3,300 American dollars! ONE INJECTION!  This is apart from what she had to pay to get started and that’s not even ¼ of the medication she will eventually be prescribed. Her Blood markers showed that she has a lot of very active HER 2 receptors and will eventually be prescribed Herceptin and that only runs about 500 dollars A PILL, one single pill!

Then we hear something horrible, something that the Burzynski Clinic is banking on:
My heart breaks every time we go into the financial office but like I tell my Mom, I don’t need an inheritance I need a Mama Bear! If the treatment works we will find a way to pay, nothing is impossible. There is no way I can let my Mom die because we couldn’t afford it. To break the tension and make my Mom laugh I tell her she better start getting ready to sell some tamales!
On the 17th, we hear that they have had an appointment with the nutritionist (notice it’s not a dietician, which is the protected professional term), where it seems they  have gotten some dodgy advice about diet and cancer:
The nutritionist was telling us that 70 percent of cancers can be prevented with nutrition alone. WOW. Basically people with cancer should avoid all red meat, eat 5 small meals with healthy proteins and complex carbs, also 1/3 cup of nuts is recommended and a wheatgrass shot every morning.
Wheatgrass juice is a nutritionless scandal. As Brian Dunning has noted: “The bottom line is that a shot of wheatgrass juice offers far less nutrition than a single Flintstones vitamin pill.”
On the 21st, we hear that one of Maria’s daily chemo doses is $500 a pill, and then we get this horrible little tidbit:
So far MB has been feeling good, she’s been holding up nicely and responding well to the new meds. She is such a trooper, taking up to 6 pills every two hours. The pills are the doctors special concoction, they refer to them as PB but they really are the antineoplastons in pill form. The doctor has cleverly found a way around the FDA by prescribing them for off label uses. Sneaky doctor;)
There is nothing clever about this, other than the fact that Burzynski is selling a urea cycle drug as a cancer treatment at an inflated cost. The joy in running around regulatory protections is also worrisome. And these are NOT a special concoction (I wonder who told them this and if that’s even legal?). You will notice that the FDA required product description on Burzynski’s AmPolGen site is identical to the NIH’s description of the drug sold by Ucyclyd (contact information is available on that sheet).
We also hear that the younger daughter is offering to get a third job to help pay the mortgage.
One of our nurses, Amanda, took a liking to us and made sure to bring over Joan, Joan has been fighting stage 4 colon cancer for 5 years, MD Anderson told her there was nothing more they could do so she came to Dr. Bs and is THRIVING! After only 2 months her tumor markers have dropped 70 percent! She said she’d never seen such a drop at MD Anderson,
We’ve noticed a trend so far, everyone we meet is stage 4,they have been told, by their oncologists, to go home and make the best of the time that they have, they get a kick in the ass and a “See you later…but probably not”, by “modern medicine”.
Ironically, what Dr. B is doing with his gene targeted therapy, seems a million times more modern and advanced than what we get at home.
Of course, it’s not. If the best cancer centers aren’t doing something, they probably have a reason.
Maria spends Thanksgiving away from most of her family. The pain in her back is growing; there’s a tumor on her L4 vertebra.
On 29 November, we get a very clear idea of the family’s perspective, and why they like the Clinic. This family, as far as I have seen yet, has not expressed any dissatisfaction with the Clinic at all. Please read that and understand what you are reading here is not necessarily as the patients themselves would have described it. However, here we are comparing each story with hundreds of other stories, which gives us a bit of perspective that we simply cannot expect these patients to have. So when Maria’s describes the care that she is getting from Greg Burzynski, she does not know that he also did this to patient Kathy B, who made it clear that she did not want regular chemotherapy (ANP is chemo too, but that’s beside the point) and who only learned that she would not receive ANP after she paid $30,000:

I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIONAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASTON PILLS THAT DID NOTHING FOR ME. HOWEVER I CAN SAY THAT THIS WAS PART OF MY PATH AND EVEN THOUGH I WASTED MY MONEY HERE I HAVE TO SAY THIS PART OF MY PATH LED ME TO WHERE i AM NOW. […]

It is the end of their trip to Houston, and the family is returning to California. On the first of December, we hear that the projected cost for continuing the treatment is $10,000. The family is starting to fundraise, already having left “most of [Maria’s] life savings” in Texas. When they get back home, something really amazing happens (and frustrating). An anonymous stranger who sees the family protesting at the hospital it seems initially misdiagnosed Maria drops off a cashier’s check for $10,000 in a bag of avocados. It’s truly an amazing gift that speaks of unalloyed generosity and kindness. And it goes straight into Burzynski’s bucket of money. The story is picked up and goes national, picked up by Telemundo, Rachel Maddow, NBC, and Fox.  We hear from the daughter in the KSDK report that Maria has “liquidated her life savings to see this doctor.”
I’ll give it to the daughter. She is a force of nature (English major, as she reveals in a vlog a few months later). In the light of the national coverage, she gets a meeting with the VP of the hospital and its lawyers. Everyone should have someone so committed in their corner when they are in need.
In the new year, on January 6th, it looks like we are getting a little bit more of the story behind the protests at the hospital. When the family returned home, they presented the oncologist with the treatment plan. The doctor rejected it. Maria went off treatment. After the meeting with the lawyers, the oncologist reviewed the plan and called the clinic to get a rationale for the treatment and then rejected it. The daughter’s frustration comes out in a long post, and we do see her fight like hell to get the treatment covered. It seems that the principle behind the protest is that insurance companies should fund any treatment that the patient wants. And we see a hint of something disgusting from the Clinic, pitting cancer patients against actual oncologists:
MBs doctor’s in TX called today and urged us to start chemo again ASAP, they said MB has a very narrow window of time to get it done before it’s too late and her body is to weak to take it. WOW, [J] has purposefuly been wasting our time, she’s not retarded, or maybe she is, she must know about this window but never bothered to tell us.
By the end of January, the family seems numb. Maria is weak, and her doctors’ appointments wear her out. We have a description of her physical and mental condition:
Today, I rubbed lotion on [Maria’s] back and saw the toll cancer has taken on her body. She looks like one of those starving kids in Africa. Her arms are skin and bone, her belly is bloated because of the tumors, her skin is thin because of the meds, her hair is gone and her legs are swollen.  When she takes off her shirt I’m shocked but unaffected, I don’t cry, I don’t feel like crying, I just rub lotion on her back and demand that God start doing something!Lately [Maria] sits in her chair in silence, I ask her questions and she doesn’t respond. She’s checked out. Her body is here but her mind is elsewhere and its not good. She’s numb too. It’s weeks like these that I pray God take her. She prays God take her too. I tell her to hang in there and she says she tries but that its getting harder.
At the end of the month, Maria’s husband has a sober realization that the cancer is progressing. The updates come less and less frequently. At some point in February, it seems that the family finds a doctor who will write Burzynski’s prescriptions for chemo.
On April 4th, Maria has a scary moment when she falls, and the family, it seems, decides to suspend chemotherapy (we can’t know if it is Burzynski’s treatment at this point) pending the results of the next PET scan. Maria is miserable, swollen with edema and weak, and the daughter comes to a realization:
[The fall has] forced us to reconsider many of the decisions we’ve made. We do not regret fighting,never that, we are just at a place in [Maria]’s disease where all of us have stopped to think, “Is it still worth it, should we keep encouraging her to do chemo when we see that it leaves her bedridden, her body falling apart piece by piece, at this point is this a life worth living. Is all the suffering, the swelling, the wounds, the bed sores, the mouth sores the sadness worth it?” I still don’t know, someday’s I think yes and some no. Everytime she gets mouthsores or a wound it’s like I get punched in the stomach. I don’t know how nurses do it. Whenever I help heal [Maria]’s wounds or even give her water to drink I’m forced to look away. I just don’t know anymore.
On April 12, Maria decides to enter hospice. She passed away in her sleep on May 12, 2012.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski, who demands his money up front for obvious reasons.