One Sunday morning in January 2001, Mackie B.’s eyes rolled back into his head. He was 1 1/2 years old. His parents called 911, and he was rushed to an Atlanta area hospital where he had a CAT scan. By Tuesday he was in the OR, where doctors operated for 3.5 hours to remove as much of the very rare and aggressive atypical teratoid/rhabdoid tumor (ATRT) from his front temporal lobe. It’s a rare tumor, and only a few dozen are diagnosed each year in the US.
Mackie underwent chemotherapy and endured the side effects: fatigue, mouth sores and nausea. He started to lose his hearing. In August, another tumor was found, and he had another surgery to remove that tumor. According to a newspaper article in the AJC (8 Nov 2001), the family: “decided to go against their doctors’ recommendations and seek
alternatives to the toxic chemotherapy medicines.”
The family decided to go to Burzynski, however, his “signature medicine” is antineoplaston, or sodium phenylbutyrate, a chemotherapy by any reasonable measure. They joined a clinical trial in September 2011. When interviewed, Burzynski gave a sciencey explanation that is empty of any useful meaning:
“He is given an intravenous infusion of a synthetic version of chemicals that exist in the body,” he said. “And what they should do is activate the gene that can eliminate the tumor and suppress the gene that is causing the malignant cells. When it is successful, all the malignant cells will die.”
The article gives the impression that ANP have only mild side effects, “including thirst.” Of course, if the family signed an informed consent form at the Clinic, the side effects of ANP listed there on Burzynski’s own form probably included severe or life-threatening increased sodium concentration in blood; risk of death; allergies; difficulty arousing, coma, severe or life-threatening low potassium concentration in the blood, decreased levels of consciousness, upset stomach, low platelet numbers requiring transfusions, severe fatigue interfering with activities of daily living, fever greater than 104F, frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter, liver toxicity, hallucinations, vomiting, chills, swelling, irregular heartbeat, decreased white blood cell count, and slurred speech. This is about a third of what is listed on an actual informed consent form at clinic. But other than that it’s mild.
Burzynski also claims that he has had success with this type of tumor, according to the paper:
Since the trial began in 1996, he said, one patient experienced a complete eradication of a tumor, and another had a 50 percent decrease in the tumor. No change was detected in the tumor of the third patient.
This is a tumor that gives a patient a life expectancy of a year or less. Trial results should be gathered comparatively quickly. As with all 60 of his studies, the results of this trial remain unpublished. His trial publication rate, if it were a batting average, is literally .000.
Just because his studies are apparently unpublishable never stopped Burzynski from charging the desperate huge sums, unlike other researchers:
Already, they have spent more than $13,000 of their savings and are facing costs of $7,200 a month for up to a year of treatment.
That $13K would likely have been the upfront cost for going to the clinic and learning for 3 weeks how to fend for themselves. Mackie has a catheter in his chest where he receives the chemotherapy and the family must learn how to use the pump. Of course, the family is forced to fundraise for Burzynski and his bogus hope, holding concerts, garage sales, and other events trying to pay the bill. We have seen what happens to a patient when they miss a bill.
We’re lucky to have this meager amount of information about Mackie’s story, and we do not see a daily journal of what transpires.
“He failed the Burzinski’s treatment and now has to have radiation to the brain.”
No. The treatment failed Mackie, as it has with every single patient on this site. (Our list of patients to write up, by the way, reached 50 pages tonight. Mackie is our 50th patient to appear.)
It is at this time that Mackie appears on CNN, where real doctors are trying an experimental treatment on Mackie, as was reported by Sanjay Gupta (16 March), debulking the tumor again and putting in its place a balloon filled with a radioactive liquid to focus the radiation very precisely. It had never before been tried on a child.
Mackie died on Dec 19, 2002. Burzynski contributed nothing but false hope and heartbreak to the family.