Critiquing: Amelia’s family ‘mislead by cancer clinic’

6/5/2013 – This article was published By Getreading [1]

“A family who sent their terminally ill daughter to the US for experimental treatment said the clinic misled them about her chances of survival

“The parents of Pride of Reading Child of Courage winner, four-year-old Amelia Saunders who died in January, say they were told she had a 54 per cent chance of survival with the clinical trial in Houston, Texas

“However mum Chantal Saunders, 36, believes the actual figure was just one per cent
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Based on what ?
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“A BBC Panorama investigation shown on Monday questioned whether the Burzynski Clinic was “selling hope” to families
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Aren’t all cancer treatments “selling hope” ?
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“In it, Mrs Saunders said:”

“I think that’s wrong” [54 per cent figure]

“I think that’s a complete lie”

“I think one per cent is a more accurate figure.”
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Based on what ?
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“Dad Richard, 35, says he has only found two patients of Dr Stanislaw Burzynski with the same rare brain tumour as Amelia who survived long-term”

“Mr Saunders, from Lower Earley, said:”

“It didn’t work for Amelia but we absolutely know it works for other people.”

“It’s hard to believe it works for Amelia’s tumour type and that’s what we have found tricky”

“I’ve had all sorts of excuses from them as to why they won’t release data on how many patients they treat and the outcomes”

“I think the figures Panorama were given show there was 700-odd patients they treated and something like 15 per cent survived over five years
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Panorama’s figures were:

“They say 776 patients with brain tumours were treated in trials before 2008.”

“And that 15.5% had survived more than five years, which compares favourably to other treatments.” [2]
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“If you look at all brain tumours that’s almost identical to any other treatment”
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Based on what ?
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“If you look at Amelia’s tumour alone you’re looking at almost zero per cent.”

Amelia was diagnosed with a rare tumour on her brain stem in February last year

“Her devastated family was told by doctors there was no treatment available in Britain”

“After finding out about Burzynski’s clinical trial, which has been running for 20 years, Amelia’s family decided to raise the money needed for the ‘antineoplaston’ treatment – a staggering £250,000 – in just a few weeks through donations”

Mrs Saunders, who also has two-year-old daughter Charlotte, said:”

“He was giving us more hope than I think realistically there was”
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Based on what ?
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Mr Saunders added:”

“We find it very hard to believe the treatment did nothing”

“We did no chemotherapy with her”

“To keep it stable for 11 months is incredible in itself, but how do we prove that?”

“We can’t.”
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Why not ?

Were there not scans ?
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“In November last year Dr Burzynski told the family a new scan showed Amelia’s tumour was breaking down

UK doctors at Great Ormond Street Hospital in London said it actually showed the tumour was continuing to grow
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Based on what ?

Great Ormond Street Hospital having 36 years of experience treating patients with antineoplastons ?
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“The family decided to stop the Burzynski treatment a few weeks later”
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Based on what ?
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“Although the family now has doubts over Burzynski’s success rate, Richard says they have spoken to others who have been helped by the drug”
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“The family now has doubts over Burzynski’s success rate” ?

What was all this, then ?

a) “A family who sent their terminally ill daughter to the US for experimental treatment said the clinic misled them about her chances of survival

b) “However mum Chantal Saunders, 36, believes the actual figure was just one per cent

c) “I think that’s wrong” [54 per cent figure]

“I think that’s a complete lie”

d) “I think one per cent is a more accurate figure.”

e) “He was giving us more hope than I think realistically there was”
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“He said:”

“We asked repeatedly throughout the time Amelia was under treatment for evidence to back up his claims, and he at no point produced this”

“We found patients ourselves through Facebook, forums, email and word of mouth”

“We want everyone to know that there are people who are living proof that the treatment works – but it just didn’t for our little girl”

“We just wish Dr Burzynski would speak the truth, and release proper, tangible results.”
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So, you wanted him to “release proper, tangible results” before the clinical trials were finished ?
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“The Saunders family have donated the rest of the money raised for Amelia to cancer research and other charities”

“This included £50,000 to a cancer treatment research team at the University of Nottingham

“Its Professor Richard Grundy said it was “unethical” for Dr Burzynski not to publish results from his trial
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So, you wanted him to “publish results from his trial” before the clinical trial was finished ?
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“Unfortunately the results from Dr Burzynski’s clinic are not published in any form that’s acceptable to the scientific community,” he said”
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So a donation of £50,000 was made, which included to a cancer treatment research team at the University of Nottingham, where Professor Richard Grundy; who exhibits NO knowledge of antineoplastons in this article, is

How “convenient” for him and the University

In my opinion,’ it is “unethical” for Professor Grundy to NOT share his findings re Dr. Burzynski’s 2003-2010 phase 2 clinical trial preliminary reports [3]

He reminds of the situation that Burzynski found himself in when he relates that clinical investigators decided to change the protocol without his approval on a clinical trial of antineoplastons

Seriously, who in their right mind would ignore the input of the inventor and developer of a medicine with close to 20 years of clinical experience, and think they know more than that person ? [4]
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REFERENCES:
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[1] – Reading Post, Amelia’s family ‘mislead by cancer clinic’, By Getreading | 5 Jun 2013 07:59
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http://www.getreading.co.uk/news/amelia-saunders-family-mislead-burzynski-4051287
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[2] – 8/4/2013 – Critiquing Dr David H. “Orac” Gorski, M.D., Ph.D, LIAR: Stanislaw Burzynski versus the BBC:
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https://stanislawrajmundburzynski.wordpress.com/2013/08/04/critiquing-dr-david-h-orac-gorski-m-d-ph-d-liar-stanislaw-burzynski-versus-the-bbc/
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[3] – 9/22/2013 – Critiquing Wikipedia: Burzynski Clinic – 2013 BBC documentary, Curing cancer or ‘selling hope’ to the vulnerable?;
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https://stanislawrajmundburzynski.wordpress.com/2013/09/22/critiquing-wikipedia-burzynski-clinic-2013-bbc-documentary-curing-cancer-or-selling-hope-to-the-vulnerable/
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[4] – Critiquing: National Cancer Institute (NCI) at the National Institutes of Health (NIH) CancerNet “fact sheet”:
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https://stanislawrajmundburzynski.wordpress.com/2013/09/19/critiquing-national-cancer-institute-nci-at-the-national-institutes-of-health-nih-cancernet/
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Critiquing: Quackwatch: Stanislaw Burzynski and “Antineoplastons” – Saul Green, Ph.D.

[1] – Quackwatch has this article which claims, in part:

“Tracing the biochemistry involved in Burzynski’s synthesis of antineoplastons shows that the substances are without value for cancer treatment”

Burzynski has never demonstrated that A-2.1 (PA) or “soluble A-10″ (PA and PAG) are effective against cancer or that tumor cells from patients treated with these antineoplastons have been “normalized.””

“Tests of antineoplastons at the National Cancer Institute have never been positive”

“The drug company Sigma-Tau Pharmaceuticals could not duplicate Burzynski’s claims for AS-2.1 and A-10

“The Japanese National Cancer Institute has reported that antineoplastons did not work in their studies”

“These facts indicate to me that Burzynski’s claims that his “antineoplastons” are effective against cancer are not credible”

About the Author

Dr. Green (1925-2007) was a biochemist who did cancer research at Memorial Sloan-Kettering Cancer Center for 23 years

He consulted on scientific methodology and had a special interest in unproven methods

This article was adapted from his presentation at the American Association for Clinical Chemistry Symposium in Atlanta in July 1997

This page was revised on January 19, 2013
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Interestingly, the above article does NOT provide any specific citation(s), reference(s), or link(s) to support any of these claims
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[2] – 10/4/1991 – Five doctors (3 from the Cancer Therapy Evaluation Branch (CTEP); including the Head of the Quality Assurance and Compliance Section, Regulatory Affairs Branch, Cancer Therapy Evaluation Program, Department of Health &Human Services, Public Health Service, National Institutes of Health, National Cancer Institute, and 2 invited consultants; including one from the National Institutes of Health (NIH) Clinical Center) visited the offices of Dr. Stanislaw R. Burzynski
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[3] – 10/31/1991 – Michael A. Friedman, M.D. Associate Director, Cancer Therapy Evaluation Program (CTEP), Department of Health &Human Services, National Institutes of Health, National Cancer Institute, sent a one page Memorandum to Bruce A. Chabner, M.D., Director, Division of Cancer Treatment, which stated, in part:

“I thought you would be interested in this for several reasons:”

“3. Antineoplastons deserve a closer look”

“It turns out that the agents are well defined, pure chemical entities
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“The human brain tumor responses are real”

20130911-102213.jpg
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[4] – 11/15/1991 – Michael J. Hawkins, M.D., Chief, Investigational Drug Branch, Department of Health &Human Services, Public Health Service, National Institutes of Health, National Cancer Institute, sent a 7 page letter to Decision Network, which stated, in part, on page one:
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“It was the opinion of the site visit team that antitumor activity was documented in this best case series … “

20130911-122216.jpg
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[5] – 12/2/91 – NCI (National Cancer Institute), Decision Network Report on Antineoplastons, states in part, on page 11:
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“The site visit team determined that antitumor activity was documented in this best case series … “

20130911-134634.jpg
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[6] – CANCER FACTS
National Cancer Institute • National Institutes of Health Department of Health and Human Services, Antineoplastons, pg. 1

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“The reviewers of this series found evidence of antitumor activity … “

20130911-094155.jpg
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[7] – Page 1 of 6, BlueCross BlueShield of Alabama, Antineoplaston Cancer Therapy, Policy #: 280, Category: Medicine, states, in part, on page 2 of 6:

Key Points:
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“The reviewers of this series found evidence of antitumor activity … “
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[8] – ANTINEOPLASTON THERAPY, HS-183, pg. 2
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“After the reviewers found some evidence of antitumor activity … “
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These facts indicate to me that Quackwatch, and Saul Green’s claims about “antineoplastons”, are “not credible”

Maybe they should have learned how to use the Freedom of Information Act (FOIA)
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REFERENCES:
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[1] – Stanislaw Burzynski and “Antineoplastons”
Saul Green, Ph.D.

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http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski1.html
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[6]
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http://www.emory.edu/KomenEd/PDF/Treatment/Antineoplastons.pdf
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[7]
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https://www.bcbsal.org/providers/policies/final/280.pdf
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[8]
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https://www.wellcare.com/WCAssets/corporate/assets/HS183_Antineoplaston_Therapy.pdf
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