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: Watford Observer – ‘He said he hoped to cure my daughter’

6/7/2013 the Watford Observer published this article By Kathryn Snowdon [1]

“The mother of Luna Petagine has cast doubt on the expensive treatment the family sought in America during the Oxhey girl’s four-year battle with cancer
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Expensive treatment,” based on what objective criteria ? [2]
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BBC Panorama this week aired an investigation into Doctor Stanislaw Burzynski’s cancer clinic in Texas, where hundreds of children – normally terminally ill – go and seek treatment”

“Luna, who was five-years-old when she died last year, was a patient at The Burzynski Clinic after her parents were told the physician could cure their daughter, despite Great Ormond Street Hospital doctors saying little more could be done for her”
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Why the conflicting statements ?

a) “her parents were told the physician could cure their daughter”

b) “The NHS are telling me my daughter’s going to die and this man is telling me that he thinks he can cure her.”

c) “He said he hoped to cure my daughter

d) “The plan was to try and cure Luna.”
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Luna’s mother, Lucy Petagine, of Raglan Gardens, said there was no doubt in her mind she was going to send her daughter to Dr Burzynski

“Mrs Petagine said:”

“Of course I’m going to go with him

If anyone had knocked on my door and said

‘here if you try this it will work’

“then yeah I would have tried it because I was in desperation”

“The NHS are telling me my daughter’s going to die and this man is telling me that he thinks he can cure her.”

“Mrs Petagine added:”

“It was all about hope

He said he hoped to cure my daughter

The plan was to try and cure Luna.”

“In order to finance the treatment, which the family believed could be life-saving, more than £100,000 was raised and in September 2011 they travelled to America”

“However, Mrs Petagine said the treatment at The Burzynski Clinic was actually killing her daughter

“She added:”

The treatment was – what was happening – was actually killing Luna because it put this pressure on her brain stem.”
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Why did Mrs Petagine say that “the treatment at The Burzynski Clinic”“was actually killing Luna” ?

Did someone tell her this, or was this her personal opinion ?

We know from Burzynski’s 3/2004 publication that:

“The reason for 50% Progressive Disease (PD) in studies is long dose-escalation process, which extends to more than a month’s time period, before the optimal dosage is reached” [3]
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“In response to Panorama’s questioning and claims that he was merely selling hope to vulnerable families, Dr Burzynski said:”

“Can you imagine that the US government… they would allow me to be here if I just sell hope?”
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Isn’t every cancer treatment “selling hope to vulnerable families”?

Isn’t every cancer clinical trial “selling hope to vulnerable families” ?
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“The treatment has not been approved by the American Food and Drug Administration (FDA)
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12/2008 – Burzynski’s publication advised:

“In 2004 the FDA granted orphan drug designation for antineoplastons A10 and AS2-1 for the treatment of brainstem glioma” [4]

9/2012“The FDA granted Orphan Drug designation for Antineoplastons A10 and AS2-1 for the treatment of gliomas, in 2009″ [5]
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“A month into Luna’s therapy, an MRI revealed the tumour had grown, pressing on Luna’s brain stem and causing her breathing problems and facial palsy”

Mrs Petagine said:”

“They said the tumour’s grown and we were like ‘how could it have grown this quickly, this doesn’t make sense’.”
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What does Mrs Petagine mean when she said:

‘how could it have grown this quickly, this doesn’t make sense’ ?

We know from [3] above, that the tumor is likely to grow before the medicine has reached it’s optimal dosage, and the tumor starts to decrease in size
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Luna had to be admitted to intensive care in Texas Children’s Hospital

Mrs Petagine said:”

Texas Children’s hate The Burzynski Clinic

“They said they have to clean up all his mess”

“The second you walk in the door they look at your child and they did actually say to us ‘are you a Burzynski family?’”
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If Texas Children’s actually does that with every child patient that comes in the door, that would be a really stupid bias to foist on some unsuspecting parent
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“Luna died in August last year”
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Unfortunately, the article does not tell the reader what happened ?

Was Luna taken off of antineoplaston therapy?

Or was she still on the treatment when she unfortunately passed ?
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REFERENCES:
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[1] – 9:50am Friday 7th June 2013, By Kathryn Snowdon
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http://www.watfordobserver.co.uk/news/10470494.print/
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[2] – 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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[3] – Review Articles on Clinical Trials:

1. 3/2004 – The Present State of Antineoplaston Research
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Integrative Cancer Therapies 2004;3:47-58
Volume 3, No. 1, March 2004

DOI: 10.1177/1534735-403261964

Volume 3 Number 1.March.2004

Pg. 50
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http://www.burzynskiclinic.com/images/stories/Publications/994.pdf
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[4] – 12/2008 – Patil, S., Burzynski, S., Chittur, S., Mrowczynski, E., Grela, K. The ingredients of antineoplaston AS2-1 down-regulate glycolysis pathways in glioblastoma cells. Neuro-Oncology 2008; 10:1148

Volume 10 Issue 6.December.2008
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http://www.burzynskiclinic.com/images/stories/Publications/7897.pdf
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[5] – 9/2012 – Patil, S., Burzynski S.R., Mrowczynski, E., Grela, K. P.003. Phenylacetylglutaminate in combination with Phenylbutyrate effectively inhibits growth of brain tumor cell In Vitro. Neuro-Oncology 2012;14(Suppl. 3):iii16

Volume 14 Supplement 3 September 2012
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http://www.burzynskiclinic.com/images/stories/Publications/9291.pdf
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