Burzynski Patient Matt B’s Story

Matt B. had a long history with cancer. As a child, he was diagnosed with advanced retinoblastoma, a disease that claimed both of his eyes. He had a natural aptitude for and love of music, and as an adult he became a guitar teacher and professional musician. He had a few benign tumors in the intervening years, but he found a tumor in his hip in May 2010 which was a leiomyosarcoma, a cancer his father had succumbed to years before. A few months later, after believing that he was suffering from a sinus infection, the cause was found to be the leiomyosarcoma again.

In September 2010, Matt went to Mexico, where he seems to have undergone a variety of alternative therapies, but I see no evidence of any benefit on his blog. In fact when he got home, the sinus tumor was larger, it had spread to his lungs and returned on his hip. He began radiation, but was in pain from the burning and was on morphine to control the pain. Also, he reached the maximum amount of radiation that he (already a cancer survivor) could have in a lifetime. Following radiation, he had surgery to remove much of the sinus tumor, but he lost the senses of smell and taste as a result.

By April 2011, Burzynski’s Clinic is on the radar:

An email from a relative recalled an option that had come up in previous research efforts, but was not explored, the Burzynski Clinic in Houston, Texas. Matt and his family worked quickly to make contact, sending his complete medical file for review, and fundraising for the hefty fees levied by the private out-patient clinic. Within a week, Matt was road-tripping across the country with his mom and sister to get to Houston. The tumor’s location at the base of his brainstem made a flight too risky for Matt. After a 3-day journey, the family met with Dr. Stanislaw Burzynski, MD PhD and his team, which included both a leading research doctor and oncologist.

Unfortunately, Burzynski’s continuous unremitting failure to finish a publishable study precludes him from being a “leading” anything. His blog reports:

Dr. Burzynski’s team has provided hope to Matt, designing a unique treatment protocol based on his type of cancer, his medical history, and the treatments rendered up to this point. He has started taking Sodium Phenylbutrate (PB) and Votrient to inhibit tumor growth.

Hope is expensive in Houston, and Matt is being given an orphaned drug given for urea cycle disorders off-label, which is legal but as practiced by the Burzynski Clinic, is basically clown medicine.

Diagnostic scans taken upon his arrival in Houston, show that Matt’s tumor in his sinuses is not growing rapidly at this time. The oncologist at the Burzynski Clinic believes that Matt will tolerate the chemo well, and that this treatment is essential to making the most of the period of slow-growth. The family will remain in Houston for a few more weeks during the 3 week chemo course, and waiting for the remaining targeted therapies to be assigned. Fundraising efforts are continuous and essential to the pursuit of treatment both while in Texas, and after Matt’s discharge.

He is in Houston by late July.

On the 29th of July, we get a sense of the costs that he will instantly rack up at the Clinic:

We’d like to give a HUGE shout out to Bernie and Joe [P.] (MattB’s god-parents; his father’s youngest sister & her husband) for picking up the $3,500 tab for a Laboratory Deposit with the Burzyski Clinic to cover our an estimated 3 week stay. Any unused portion of this generous gift will roll-over to Matt’s expected $4,500 monthly maintenance fee post-discharge. Thank you from the bottom of our hearts!

In the same post, we see what the first day at the Clinic looks like:

  • EVENT                                   LOCATION                             ESTIMATED DURATION

    Check-in                                 Reception Area                      15 min.

    Nurse Vitals                          Exam Room                            15 min.

    Doctor’s Consult                  Consultation Room             45 min.

     

    [Dr. Kubove and Oncologist, Dr. Yi took a thorough accounting of Matt’s complete medical history. A Q&A session with the family filled in any gaps or questions by the doctors, and the family was invited to ask questions as well.]

     

    Consult with Dr. Burzynski  Consultation Room            Duration Varies

    Financial Counseling             Counselor’s Room                45 min.

    Physical Exam                           Exam Room                            15 min.

    Lab Test                                       Exam Room                            15 min

    Check-Out                                   Reception Area                      2 min.

And we soon see what his daily med costs look like:

  • $100 is the cost of MattB’s daily visit to the Burzynski Clinic.
  • $200 is the cost of MattB’s daily Votrient prescription while in Houston.
  • $360 is the cost of MattB’s daily dose of Sodium Phenylbutrate prescription while in Houston.

As you can see, things add up very quickly, and these are just a sampling of the costs that Matt and his family are struggling to pay at the time of service while at the clinic. The Burzynski Clinic does not accept insurance of any kind. Some of these costs will be reduced upon discharge, when Matt returns to California, and can work with an in-state doctor to write the prescriptions (as directed by Burzynski’s protocol), and then submit through his insurance.

The Clinic turns cancer patients and their families into full-time fundraisers. During the stay in Houston, Matt releases a video:

On August 16th we hear that the “cost of discharge for MattB from the Burzynski Clinic is $12,370.”

We hear several weeks after the fact that an MRI in October showed the tumor continued to grow:

An MRI completed last month showed that the Gemzar & Taxotere chemotherapy treatments rendered had had little effect on the main mass in Matt’s sinuses. Upon reviewing the scans, the doctors at the Burzynski Clinic in Houston went back, and reviewed the results from MattB’s genetic testing again, and recommended the use of a different chemotherapy drug, Alimta. This particular drug is not FDA approved for Matt’s specific type of cancer, which means Matt’s Orange County docs need to write a letter, petitioning Matt’s case to the FDA in order to receive the drug and administer it.

Matt’s clearly exhausted. He is exploring other clinical trials by November, and I suppose that coupled with the statement in February 2012 that: “My body is unable to undergo full doses of even the most mild chemo.  I began to shut down after only a couple of doses subsequent to my visit to the Burzynski Clinic,” he is off the Burzynski regimen. When you look at the facebook account, he tolerated Burzynski badly.

Matt fought on through August 2012, when he went into the hospital for the last time. He died surrounded by family.

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.