Burzynski Patient Rebecca L.’s Story
In January of 2000, according to the New Hampshire Union Leader (24 Apr 2000), 9-year old Rebecca L. became unsteady (she was not skiing well during a family trip, and couldn’t get off the bunny slopes) and she started vomiting.
The Boston Sunday Globe (14 May 2000) tells the story:
For the next few days, Rebecca didn’t feel like going to school. Then, when she did go, her parents received a phone call they will never forget. “Her teacher, who know the signs of brain tumors because she lost both her parents to brain tumors, called us,” [Rebecca’s dad] said. “She was crying when she called us. She said, ‘You’ve got to get her checked out today.'”
When they got to the doctor, according to the Union Leader:
The next day, the doctor told them: “We’re going to be looking for a brain tumor.” The [Ls] were stunned.
Becky was taken directly to the Elliot Hospital and following a CAT scan was transferred to Dartmouth by ambulance, where she underwent an MRI. [Rebecca’s dad] said doctors initially thought she was suffering from a benign tumor on the brain stem and scheduled surgery.
It was not benign. It was a malignant glioblastoma multiforme, and without treatment, Rebecca might have 2 months. She underwent 6 weeks of radiation. And that was about all that could be done. After hearing of two of the patients in area who claimed success on Burzynski’s treatment, they determined to go see him:
The family’s insurance policy with Anthem Blue Cross won’t cover the Burzynski treatment because it’s part of a Food and Drug Administration trial. Their old insurance policy with Tufts would have covered it, [Rebecca’s dad] said.
But he said Blue Cross did more than just refuse to pay for the Texas clinic treatment. “They cut us off from all the support,” he said, and won’t pay for MRIs, blood work or anything else.
While the costly Burzynski treatment offers only a 44 percent chance of success, “I have to try it. If you give up hope, you have nothing,” said [Rebecca’s dad].
The drugs that were supposed to be in trials were Burzynski’s patent medicine, antineoplastons. There is no compelling evidence that the substances originally derived from blood and urine have an effect on cancers. The Boston Globe (14 May 2000) also reported on this:
“The treatment in Boston offers no cure, but down there [in Texas] 44 percent of his patients have a response,” [Rebecca’s dad] said. “It affects their tumor in some way. And, half of that 44 percent are in remission. That’s not bad, going from zero percent chance of living here to 20% down there. When you are talking about your child, I would do it for a 1 percent chance.”
The 20 percent cure rate the father believes is absolute, unmitigated, unsubstantiated bunk. There has never been a trial that established efficacy; there have been zero convincing publications. That number is apparently conjured from the ether. It’s even sadder to realize that when the FDA went in and examined his trial results, they found the recorded outcome did not match the actual response 66% of the time, and apparently it was always inflated. Rebecca’s dad unwittingly lays out exactly why Burzynski has been so successful attracting desperate parents into his office. He oozes hope to the hopeless. How anyone could give that number to this family when they are the most vulnerable is unfathomably cruel.
The cost was sufficient that Rebecca’s father, like those of so many other desperate dying children, went to the media to raise money. Both the Globe and Union Leader ran the address of the fund that had been established for Burzynski. The Globe quoted Rebecca’s father:
“There are a lot of expenses and I don’t know how we’re going to do this, but we love our daughter and we’re going to do it.”
And they did it. They raised over $100,000 for Burzynski. The stunning generosity of communities is Burzynski’s cash cow, and he milks it over and over. In March of 2001, the Union Leader filled in some of the gaps about the fundraising:
Their insurer would pay none of the bills, so the family let Becky’s plight be known. Fundraisers included a Christian music concert at Veterans Park, a golf tournament at Tory Pines and a NASCAR fundraiser at the Pinardville Athletic Club.
A phenomenal effort. We don’t get a play-by-play about what happened with Rebecca’s treatment. We get a summary from her father:
For a while they worked, said her father […]. “The money, if people donated, it was so worth it. We had a whole year with her. Every day was treasured,” he said […]. She took a turn for the worse in November, and doctors said nothing else was possible.
Yet another family reporting that the treatment was working before it wasn’t. There are endless cases of this on the website. We don’t see what “working” means here. Not growing? Shrinking? Unknown.
It’s difficult to explain why the father credits the treatment with the year, as it is exactly what the doctors at Dana-Farber said the radiation might give her before the family even went to Burzynski, as reported in the Globe on May 14, 2000:
Sadly, the intervening year can’t reasonably be credited to Burzynski, no matter what the family believes, though it is wonderful that they did have a year together before the end.
On February 22, 2001, teenaged singer Aaron Carter performed in the area, and a local radio station managed to get tickets and a back stage pass for Rebecca. The encounter was described the next day in the Union Leader:
Before the show, he met with 10-year old Becky [L], a wheelchair-bound Manchester girl with inoperable brain cancer. Her meeting with him was quiet she was really too shocked to speak.
“I like your nails,” he said to her. She grinned . She’d had them done for the show.
Then he wrote “Becky” on his palm and said, “I might even mention your name on stage.”
And when it was time for the thin, towheaded superstar to go, he told her, “You better enjoy the show.”
“I will,” she said back. He “adiosed” and ran toward his backstage area.
Becky’s mother […] said her daughter acted like any other teenage girl this morning.
“She couldn’t wait to start getting ready,” she said. “She knows every word on his CD these days.”
The following Tuesday night, her breathing became erratic.
The nurse gave her sedatives, then pain relievers. Before Becky closed her eyes, she and her father exchanged their last words.
“I asked her if she was still in pain. She shook her head she was,” he said.
[He] stayed up until 5 a.m., and went to bed after the hospice nurse said it could last for days. His wife […] checked on Becky at 6 a.m.
She died before 7.
Rebecca L. died at home on Feb 28, 2001.
Burzynski Patient Kuly R.’s Story
I’m sad that I only heard of Kuly R. after he had passed away. Kuly and his two brothers formed the band RDB (Rhythm Dohl Bass), a popular British-Asian urban bhangra group I have been listening to ever since I first came across Kuly’s name in a post over at A Healthy Dose of Skepticism. If you listen to a clip of their music, you’ll recognize the hip-hop influence instantly, but you’ll also hear a Punjabi influence, which was new to my ears.
The brothers made their name as performers and producers, and their initial success, brought about by a fusion of eastern and western music, has brought them opportunities to participate in high-profile collaborations with Snoop Dogg (“Singh is Kinng”) and Ludacris (“Shera Di Kaum”) and the top names in Bollywood music. (About halfway through “Singh is Kinng” you get the sense that these styles work really well together, and it is delightful to hear Snoop rapping about the babes in Mumbai.) They founded their own label, Three Records. The remaining brothers, Surj and Manj, have pressed on. They were a featured act in March 2013 at the first India MTV Video Music Awards, where they appeared with T-Pain.
The family was pretty tight lipped about Kuly’s illness; it does not seem that they were public about it, and there are practically no published details. As such, there is not much of a trail to trace here. Patients who end up at the Burzynski Clinic, however, have very similar, at times nearly identical experiences. Also, we have looked at enough cases on this site that minor details can actually be quite revealing. It should be remembered, however, that what follows is really a composite of other patients’ experiences. Kuly’s case is really more of an occasion to share what we know of these patients rather than a straightforward account of his experiences. We try to indicate where we stray from what we know about Kuly so as to avoid confusion; we invite correction should we get any particulars wrong.
In April 2011 Kuly, the oldest brother, was diagnosed with a brain tumor. We know that he had radiation and chemotherapy. This treatment seems to have stayed the progression of the tumor for the rest of the year. In October 2011, the brothers were planning their India tour, and an BBC interview with them suggests that they are on the verge of superstardom. Kuly is interviewed, and he looks pretty good. The South Asian Times reported his death on May 25, saying, “He was receiving treatment at a specialised clinic in Houston, US, at the time of his death.”
Kuly might have gone to MD Anderson in Houston, a world renown cancer research hospital. But it really looks like he was at the Burzynski Clinic. We know this because of a message from Geeta, Kuly’s wife, which appeared on the Team Hannah website (Hannah was in Houston at the Burzynski Clinic at the time of this message):
The treatment that a brain tumor patient would have received at the Burzynski Clinic at this time is likely straightforward enough that you can back fill some of the story. My best guess is that if they left Houston on the 22nd, they probably arrived at the Clinic around the first week in January 2012. If he was in one of Burzynski’s “trials,” he and his caregivers would have spent their time in Houston learning to administer the medication.
Kuly was likely being treated with the metabolic byproducts of sodium phenylbutyrate (PB), an unproven form of chemotherapy that Burzynski has been treating patients with for decades. PB is an orphan drug used to treat urea cycle disorders and carries an enormous sodium load. (The amount of water that patients have to drink is unreal, and increased blood pressure, as you might imagine, is dangerous to someone with a brain tumor.) Burzynski originally found these substances in human urine, but he has since industrialized their synthetic production. He hypothesized that the lack of these substances in cancer patients’ urine meant that “replacing” them might curer cancer. He labeled them “antineoplastons” (ANP), literally “anti-cancers,” and began treating patients, having never gone through the appropriate vetting process. Nobody in the medical literature has ever identified “antineoplaston deficiency” as a cause of cancer. Decades later, there is still no compelling evidence that antineoplaston therapy is any more efficacious than giving a tumor a stern talking to.
Because of a major lapse in the FDA’s judgment, Burzynski was allowed to administer this chemotherapy as part of a clinical trial. So what did he do? Open up over 60 clinical trials. And don’t take my word for it. Burzynski’s lawyer, Richard Jaffee, in his memoir, said that in order to “make sure Burzynski could treat new patients”,
[…] Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future.
In all the years he has been pumping this failed therapy into patients, he has never published a finished study. If you follow the link above, you will see that all of his trials are abandoned or of unknown status. His research career is a joke. Another red flag is the fact that Burzynski charges his patients to participate in clinical trials, up to $30,000 to start and maybe $10,000/month thereafter, often bleeding the dying dry. This is not a business model that suggests that ANP is likely to ever go to market as a cancer cure.
Sadly, at about the same time that Kuly died, a pediatric patient died, and the possibility that the ANP killed her was strong enough that the FDA put a temporary hold on all new antineoplaston patients. No new patients are getting antineoplastons at this time. An intense investigation of the clinic was carried out by the FDA at the beginning of this year, and I received the observation notes of one part of the inspection through a Freedom of Information Act request. What inspectors observed, in my opinion, was not what one expects of a reputable research institution. We have copies of these inspection notes on this website. If any lab at a government-funded research university had had this type of inspection (and we are still waiting for the final report), all government funds to the entire university would be cut off immediately. Sadly, a child had to die before the FDA took action.
Not two months before Kuly began treatment with Burzynski, a person who had been hired by the clinic to provide “web optimization” services, Mark Stephens, started issuing fake legal warnings to people who openly questioned Burzynski. Among these was a high school student in the UK, who was sent a picture of his house by the Clinic’s tough, the clear message being, “We know where you live.” These threats against critics were covered extensively in the international press. What was not reported at the time was that the same worker was making nearly identical pseudolegal threats to Wayne Merritt, a former pancreatic cancer patient of Burzynski, and his wife Lisa Marie, herself a breast cancer survivor. Stephens called these cancer patients at home to threaten them (how a web optimization person got their names given the patient privacy laws in this country is certainly curious). The Merritt’s story is also shared on this website.
In February 2012, the younger brothers were interviewed by Rolling Stone, when their brother must have been obviously ill, and they did not mention the treatment or give any hint about what they were going through. At this time, if he were still on treatment (and because he died in Houston, I’m going to presume that he stuck with Burzynski all the way through), Kuly would be receiving nearly constant infusions of antineoplastons through a programmable pump that he would be carrying with him. He probably would have felt lethargy because the sheer quantity of water that he’d need to imbibe (I’ve seen up to 12 liters a day) would have kept him up at night, running back and forth to the lavatory. He probably would have been on a fairly heavy dose of steroids, which might have ameliorated some of the inflammation associated with the tumor and temporarily relieved some symptoms.
There is a chance that Burzynski had Kuly on what he calls, “personalized gene-targeted therapy,” which uses a commercial genetic test as a type of “medical palm reading.” This is Burzynski’s only medical option right now, and we suspect that the majority of his patients end up on this (even if they have been attracted by antineoplastons). Untested combinations of off label chemotherapies are sold to the patients on the basis of this gene test. But this therapy, at least until the FDA shutdown of the ANP trials, was reserved for patients who did not have brain cancer (though when the ANP fails a patient, which is a lot, the Clinic seems to try to get the patients to sign up for this similarly expensive course of treatment).
The experiences of patients on antineoplastons often follow a similar course: the tumor appears to stop growing on the MRIs, which are administered and sent to the Clinic for evaluation every 6 weeks or so. While patients always seem elated about the progress that they are making early on in the treatment, in fact solid tumors tend to grow very quickly at first, but the time that they take to double in size increases, which leads to a Gompertzian growth curve, an elongated s-shape with rapid growth in the middle.
At the same time that these tumors temporarily level off, patients often report excitedly that their tumor is “breaking up on the inside” or that a fluid filled cystic region has opened up in the middle. These are almost universally embraced as evidence that the tumor is dying and that ANP is working. Unfortunately, this is far, far more likely to be because the tumor has actually outgrown its blood supply and is dying in the middle. Every competent oncologist knows this is probably a dire development, yet Burzynski’s patients seem to believe that this is good news. We have found the same story repeated over at least 20 years:
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- In the most grotesque horror show I have ever written about, Burzynski himself tells the family of Chase S. the same thing.
This is part of a larger pattern which is every bit as disturbing, patients reporting that worsening symptoms are signs of getting better, which may be comforting but is self-defeating and always ends badly. The claim seems to be that the tumor is swelling because the drugs are killing it, or that the immune system can’t keep up with all the remains of the tumor, or something. (Around the time this was happening, such swelling was not listed on the ANP consent form as a possible serious side effect. See Even strong side effects during initial doses have led to whoops of joy from the nurses there, as was the case in John D.’s story. We sincerely hope that Kuly’s family did not have the same experience that so many other people have had; if they did, we hope they realize that they weren’t the only ones. A biography of Kuly’s wife (pdf) notes that there was a time where “Kuly’s health appeared to be improving.” I’ve heard that so many times, but why does this “improvement” never seem to lead to an extension of life?
Kuly died in May 2012, according to the sad RDB press release:
The international music fraternity has faced a saddening loss with Kuly of music band RDB, passing away on 22nd May 2012 in Houston, Texas, USA. The popular music group member sadly lost his battle with cancer at the young age of 35 years old.
His wife was by his side when he died. What is most curious to me is that Kuly died in Houston. It seems to me that most of the international patients tend to die in their home country. Once the caregivers are trained, they continue treatment at home, monitored by local physicians. Furthermore, the Clinic has no beds. Burzynski besides not being a board certified oncologist also has no hospital privileges. So, I am surprised to see that after they returned home in January (presumably to Bedford, UK), that they were back in the US in May, and apparently back at the Clinic. One possible scenario is that after ANP had irrefutably failed, even from the perspective of the family, is that, like Adam M., he was offered the other, “gene-targeted” treatment, which necessitates returning to Houston to begin treatment again:
We don’t know what we are supposed to do next. We have discussed a few options, but they all look so awfully wrong. The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy. It just feels wrong. First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there. It makes both of us nauseous just thinking of going back to that place and starting over. The monthly cost of the treatment is over $20,000.
The other possibility is that the family traveled back and forth more frequently between the US and the UK than the typical patient. (In the BBC interview, the brothers note that home is whatever plane they are on.) They seem not to have had to raise money like so many of Burzynski’s other patients in the UK. It occurs to me that if this scenario is true, the timeline may be even less certain, as they may have met Hannah during one of any number of trips. So, keep in mind that while the case of Kuly is speculative, the general story that I’ve told holds true for so many of the 550 patients we’ve collected on this website.
Kuly has not been forgotten. Soon after his death rocked Bollywood, is colleagues recorded tributes. He is on the Brampton Walk of Fame. His brothers have said that they have retired his position at the record label and that nobody will “sit in his throne.” His wife has made brain tumor research her preferred charity, and she has raised a lot of money, most notably through the Street Spice event in March of this year. On an old fundraising page (the charity it linked to has since merged with another charity), Geeta notes:
As well as his passion for music, the concept of ‘Seva’ (selfless giving) and education were very important parts of his life. A humanitarian, Kuly always wanted to give back to society and encouraged others to do the same. Along with a zest for life and charity, he also always wanted to continue learning and expanding his horizons.
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us.