Burzynski Patient Chelsea S.’s Story

In May 2012, 3 months after she gave birth to her second set of twins, 35-year old dancer Chelsea S. lost vision and experienced numbness in one half of her body. She was diagnosed with a brain cancer almost never seen in adults, a pilomyxoid astrocytoma (PMA). It was near the brain stem and could not be removed, though she received a diagnosis after a biopsy. It appears that she also had radiation. In August, after the radiation, she was told that palliative care was her best option.

The family, understandably was upset and sought another option. As recounted in the Vancouver Sun in November 2012:

They weren’t ready to accept that Chelsea would die; within a matter of days, they had heard through friends of the Burzynski clinic; a quick search online brought them to his website. Steyns’ sister Emma filled out an online application, sent in a package of Steyns’ medical information, and two weeks later the sisters were on a flight to Texas.

They didn’t balk at controversy surrounding the doctor, or the cost: $35,000 up front and up to $30,000 a month for the targeted gene therapy treatment

According to a facebook page that was set up in Sept 2012,

Since her diagnosis, Chelsea’s case has been overseen by a team of doctors from both Lion’s Gate Hospital and the B.C. Cancer Clinic. She has just completed an aggressive round of radiation treatment but unfortunately it has not stopped the tumor growth and her doctors have said that they are unable to offer her any other conventional medical options. The Burzynski Clinic […] in Texas can offer her Personalized Gene Targeted Cancer Therapy which has shown huge success in the the treatment and remediation of Chelsea’s type of cancer, however because the treatment is still in its trial phases, it will come at a huge cost.

Usually, experimental therapies are provided at no cost to a patient. This may technically be true at the Burzynski Clinic, where they happily tell US senators that there will be no charge for the experimental agent, but then charge out the nose for all sorts of “support” services. How much in the case of Chelsea?

$35,000 up front and up to $30,000 a month for the targeted gene therapy treatment.

Now at this point it seems that it’s unclear which form of quackery Burzynski is pouring into her veins, whether it is the “antineoplaston” treatment, a fraction of human urine a lack of which is not recognized as a cause of cancer but which Burzynski “replaces” anyway, or the untested, potentially synergistically toxic chemo cocktail based on the genetic equivalent of palm reading that he calls “gene-targeted therapy.” Both are dangerous and unproven.

Burzynski is treated with well-earned contempt by physicians interviewed for the Vancouver Sun piece:

Dr. Chris Daugherty, an oncologist and international authority on medical ethics and end-of-life decision making at the MacLean Centre in Chicago, draws a line between patients pursuing treatments based on “real trials” and Burzynski, who he says is “off the bell-shaped curve 95 per cent of us practice on.”

Daugherty said it would be unfair to compare Burzynski, whose treatments have not been shown in any randomized study to be effective, with doctors conducting clinical trials at more traditional medical centres […].

Chelsea has her first appointment on Sept. 18th spends several weeks in Houston, suggesting that this is in fact that ANP treatment, Burzynski’s patent medicine. Of her first day, we hear on her blog:

Then we spent the rest of the day at the Burzynski Clinic where I met the Big Guy. See pic. They reviewed my files and images in a very formal way. We were interviewed by 2 separate doctors and then the 2 of them together with Dr. Burzynski. Then after they accepted me into phase 3 of the trial of the Antineoplastone program, they send you to financial department to drill you and see if you can actually afford it (thank goodness for the run). Next they take you for a physical – blood work and an exam. Now we wait for the FDA to approve my case which needs to happen before I can start (up to 3 days). We felt very excited leaving the clinic. A new pathway for me and some real hope to kick this tumour into remission!

Yep. They give you hope and then they shake you down for cash. It’s called the hard sell, and any number of patients have reported that. It’s curious that they think that they are in a trial, where it sounds like they are applying for a special exemption with the FDA. A few days later, we hear:

After receiving FDA approval, Chelsea has begun her customized treatment. She  had some wonderful days exploring neighboring towns with her sister […] last week before treatment started Thursday, and on Monday was joined by her brother […]. Despite a few challenges, she is doing well and continues to express her gratitude for everyone’s love and support here at home.

What are the few challenges? Perhaps the side effects of the ANP:

She has had difficulty tolerating the treatment, and is experiencing severe side-effects including dangerously low potassium levels, temporary blindness and severe pain.

It is chemotherapy by any reasonable definition. And isn’t temporary blindness her original symptom? Nonetheless, Chelsea’s sister is a nurse and is taking care of her, and we get a peak at what the family was being told at the Burzynski Clinic:

“Before we went to Texas I was just sad all the time,” [Chelsea’s sister] said. “Texas really gave us a boost because the nurses and doctors are saying they’ve seen patients come in totally debilitated, as bad as Chelsea, and walk out.”

Notice this is very different from actually seeing the patients get out of their wheelchairs. And since the nurses have a nasty habit of saying stupid things to patients at the clinic, like, “Your side effects are a sign the ANP is working,” one should take their words with a grain of salt substitute. They return from Texas on October 11. At any rate, Chelsea is very popular and her fundraisers, by November, have raised over $200,000 for Burzynski.

Another thing that sticks out from the Sun article, is how puffy Chelsea’s face is. This is likely a side effect of the steroids that Burzynski puts his patients on.

Just before Christmas, Chelsea’s facebook page reports, in between massively successful fundraisers for Burzynski:

Christmas has officially come early this year. Great news yesterday! Chelsea’s Tumor has shrunk 13% since the last MRI which was in October and this result has been confirmed by Doctors both here as well as in Texas.

On Feb 21 we get this update:

Update time: Chelsea had a scan on Feb 5th which again showed continued reduction of the tumor. This was not a surprise to her or her family as her movement and strength in both her legs and arms continued to improve also.

It’s been a rough month with colds which have been a challenge for Chels, but she has faced them all with a smile. Her best week included watching her “kids” dance at Snowmotion. Her next scheduled scan is in March.

We don’t hear about the March scan, only that she is on vacation with her family. The next update relevant to her treatment comes on May 24:

A very brief update on Chelsea: She is at home with [her husband] and the kids, and is continuing to receive cancer treatment. Some days are better than others as is to be expected, however she faces each one with positivism, spunk and resilience as only Miss Superwoman can.

Chelsea S. died on June 23rd.

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.