On November 28, 2011, mother of 2 Amanda C. of Brimington Common, Chesterfield (UK) was diagnosed with a grade 4 glioblastoma. It’s an aggressive cancer and her prognosis was poor. Doctors quickly determined that the tumor was in too delicate an area of her brain to debulk through surgery, so she embarked on a course of chemotherapy and radiation, which was very tough on her. According to her justgiving site:
Amanda had treatment at Weston Park Hospital in Sheffield, 30 doses of radio & chemotherapy in 6 weeks.
This treatment is very aggressive with severe side effects and Amanda reacted badly to this. It made her very ill and caused her to be paralysed completely on her right side.
It’s a heartbreaking story. By May, according to a post on the Hope for Laura Fund page (Laura is now dead–most of the people who raise enormous amounts of money for Burzynski are) Amanda and her husband are already looking to the Burzynski Clinic:
May 21, 2012 at 3:15pm · Like ‑ Reply
Roger [C] Fantastic news….my wife & I are hoping to visit
the clinic soon…we are in touch with them
The projected cost, at least according to the justgiving site is £200,000 over a two year period.
In August, Amanda’s husband describes the alternative medicines that Amanda is taking:
She’s doing very well…at present. I give her:
1. Boswellia & Turmeric – reduces swelling so less dex steroids
2. Doctor Prasanta banerji Cal phos & Ruta gra 6 – 75% success with brain tumours
5. Reishi Mushrooms
6. Apricot Kernels
7. Soduim Bi carb
Prasanta Banerji has appeared in two other stories on this website, the case of Maryn C. and the absolute extreme of possible harm I’ve ever seen inflicted by purveyors of alternative medicine, the case of Chase S. This Banerji character is a homeopath, which basically means he sells expensive water and placebo pills. Every brain cancer patient I’ve seen taking his remedies is dead. Not exactly a 75% success rate. The other treatments I recognize, apricot kernals (i.e., laetrile–kernels contain a substance that breakdown into hydrogen cyanide, which is as bad as it sounds) and sodium bicarbonate, are disproved and ineffective.
In early September 2012, when a friend posts on the Team Hannah website that they are still fundraising and this goes through to at least October. Burzynski isn’t cheap.
In October, we hear of intense fundraising in the local paper:
But following research into the Glioblastoma Grade 4 brain tumour, [Amanda's husband] discovered a treatment and possible cure at the Burzynski Clinic, in America, so the couple has set up the Amanda [C] Cancer Trust with fantastic fundraising plans including the charity shop at Unit 16, on Storforth lane, Trading Estate.
[Amanda's husband] said: “Amanda was told there was no known cure for this type of cancer and she had only three months to live. This was devastating for the whole family.
“But now the Amanda [C] Trust has been set up in a bid to raise awareness about brain cancer and to raise funds for Amanda’s treatment in America.”
This charity shop seems to be a business set up to support Burzynski. Indeed, fundraising went through December and beyond. According to an article in the local paper that ran on 27 December:
A Matlock fundraising event raised £500 towards pioneering cancer treatment.
A book sale was held at the County Hall organised by the Derbyshire county
councillors’ secretarial team to raise money for Amanda [C]. [...]
Cllr Chris Jackson, vice chairman of the council, said: “I was very pleased
to support this very worthy local cause and staff did a great job at helping to
raise £500. The county council supports many organisations through the year
in a formal way but small unofficial fundraising events like this can
make just as important a difference.”
Amanda was worth it. Burzynski is not.
Following this, Amanda apparently visited the Burzynski Clinic in Houston in December, and she appears in the Derbyshire Times on March 6, 2013.
This article suggests that she was there for about a month, which is more or less standard when someone is put on Burzynski’s protocol. This is because patients’ caregivers are required to learn how to administer the drug. This fact, that lay people were routinely charged with programming the chemotherapy pumps, may have contributed to the over 100 overdoses that the FDA observed in patient records during an inspection of the clinic at about the time Amanda was there.:
Amanda [C], 46, spent four weeks at the Burzynski Clinic in Houston, Texas, in December where she received a pioneering drug in a bid to prolong her life.
Her husband [...] was also shown how to administor the Antineoplaston (ANP) drug at home.
And despite a few set backs since their return from Houston, things are starting to look up.
[Amanda's husband] said: “She has had her first scan and the doctors in America are pleased.
“The tumour is stationary and over the next few months we are hoping it decreases in size.”
The relentless positive attitude here is in some ways heartening, but it’s also discouraging, especially if we look at the record of her progress captured on social media. Before the above article was published, Amanda reported that she was taken off ANP (Feb 1), back on (Feb 3), off again because of bad blood values (Feb 18), had a seizure (Feb 20), and had increasing symptoms and her Hickman line replaced (5 March). All of this happened BEFORE this the article published on March 6th. Now, I understand the importance of being positive, but glossing signs of disease progression and complications as “things starting to look up”–and I fault the newspaper for not fact-checking–it can give a false impression of antineoplastons’ efficacy. A much more striking and higher profile case of a sharp difference in what actually happened and what was reported in the press was the case of Amelia S, when a paper crowed that she was returning to school, omitting mention of the logistical juggernaut that had to be assembled to make that happen. Burzynski has thrived on lazy journalism, and it’s probably why the Clinic pitched a fit when a real reporter paid the story as much attention as they did in November of last year, when he appeared on the cover of USA Today. Burzynski is apparently not used to real reporters.
Amanda was back on ANP on March 8, but suffered a bad fall only a few days later. The family continued to raise funds for treatment, which by their estimate was $8500 a month. Amanda died in May.
Please donate to St. Jude Children’s Research Hospital, which does real research into brain tumors. If you want to take further action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into relevant search results.