Stanislaw Rajmund Burzynski, Stanislaw R. Burzynski, Stanislaw Burzynski, Stan R. Burzynski, Stan Burzynski, S. R. BURZYNSKI, S. Burzynski, Arthur Burzynski, Hippocrates Hypocrite Hypocrites Critic Critics Critical HipoCritical
—————————————————————— GorskGeekgesticulates [1]:
—————————————————————— “At least a third of the video consisted of the difficulties that Hannah had with her treatment, including high fevers, a trip to the emergency room, and multiple times when the antineoplaston treatment was stopped“
“She routinely developed fevers to 102° F, and in one scene her fever reached 103.9° F“”
“She felt miserable, nauseated and weak“
“I’ve seen chemotherapy patients suffer less”
—————————————————————— GorskGeekgets at least one thing correct [2]:
——————————————————————
In America(48 days): 12/11/2011 (Sunday) – 1/27/2012 (Friday) [4:52 – 35:43]
—————————————————————— Burzynski Clinic47 days – (7 weeks) 12/12/2011 (Monday) – 1/26/2012 (Thursday) [5:37 – 35:43]
—————————————————————— 47 days – Burzynski Clinic 31 days – treatment NOT mentioned 16 days – treatment mentioned
—————————————————————— 5 days – off ANP: (May have been off ANP5 to 6 days out of 45 days?) 12/25/2011, Sunday(Day 15)Burzynski Clinic
(OFF ANP) 12/27/2011, Tuesday(Day 17)back on ANP
(OFF ANP) 12/28/2011, Wednesday(Day 18)Burzynski Clinic (on ANP much smaller dose) 1/17/2012, Tuesday(Day 38)Burzynski Clinic
(OFF ANP) 1/21/2012, Saturday(Day 42)Burzynski Clinic
(OFF ANP)
—————————————————————— 6 days (temperature mentioned out of 47 days) .12/27/2011 – 102 – down / up .12/31/2011 – 102 – middle of night 1/16/2012 – 102+ – Monday night 1/17/2012 – 101.8 1/20/2012 – 103.9 – Friday night 1/21/2012 – 102.5
—————————————————————— GorskGeekgandalf’s:
—————————————————————— “She felt miserable, nauseated and weak“
——————————————————————
However, he does NOT produce one citation, reference, and / or link which would buttress his baste
—————————————————————— GorskGeek’saphorism“anecdotal”A-bomb:
—————————————————————— “I’ve seen chemotherapy patients suffer less”
——————————————————————
just blows . . . back up in his blood-brain barrier
Let’s do what Dr. (Supernaught) Dave and his Science-Baste Medicine would NOT do
Compare the radiotherapyHannah had, to the antineoplaston therapy she had
—————————————————————— 4/1/2011 – Surgery 6/2011 – Started radiotherapy 8 weeks after surgery
——————————————————————
1. Needed 6 weeks of radiotherapy
2. Full-on – 6 weeks of treatment(Monday-Friday)
3. Did that, thinking this would make me better
4. Radiotherapy went well for 1st few weeks but fears were confirmed when hair falling out and bouts of tiredness and lethargy
5. Lost hair
6. Two weeks into treatment was hit by wave of tiredness
7. So shattered had to go to bed for week
8. Started having seizures and didn’t know how long she had to live
9. Was still having seizures and lost independence with losing driving licence
10. On top of all of this, dealing with‘v as had number of seizures and now has epilepsy
11. Was gruelling – hair fell out, had quite a few seizures – then, at end, scan showed still had remnants of very aggressive tumour
——————————————————————
A. Hair falling out
B. Lost hair
C. Bouts of tiredness and lethargy
D. So shattered had to go to bed for week
E. Started having seizures
F. With number of seizures, lost independence with losing driving licence
G. Now has epilepsy
H. Was grueling
—————————————————————— Hannah’shair all fell out, she suffered bouts of tiredness and lethargy, had to go to bed for a week, started having seizures, and got epilepsy, all in the course of 6 weeks(30 days – Monday-Friday) of radiotherapy
Does GorskiGeek really expect true Science-Based Medicine researchers; unlike himself, to come to some biased conclusion, that these 30 days of radiotherapy; 20 of which come after the “first couple of weeks” umbrella, are somehow “better” than 16 days of antineoplaston therapy issues ?
—————————————————————— GorskGeeksproselytization of Science-Based Medicine is nothing but a sham
If Gorski actually, really, believed in SBM, he would practice what he preaches
To “Orac,” SBM is nothing more than a TOOL, which he attempts to wield the way Hitlerstormtrooped the SS (Schutzstaffel), Leninkerfuffled the KGB (Komitet gosudarstvennoy bezopasnosti), Stalingate-way drugged the Gulags, and Mussolini#failed with Fascism
GorskiGeek seems to want to Fiesta with Fidel, in that the asserted appearance of both, is because of the belief in the almighty buck
Yes, maybe they’re always just looking for that extra bit of added greenback bill, a blatant handout [3]
—————————————————————— GorskGeek “believes” in his Science-Basted Medicine so much, that he fails to advise readers how Hannah did aftershe and Pete Cohen returned to the “G.” to the “B.”
Did Hannah experience continued “side effects”?
That’s what I call the hash tag failure of Gorski’s Science-Based Mudicine
—————————————————————— Gabroni Gambit (also known as Gorski Gambit a/k/a GorskGeek Gambit): The failed attempt by “The Skeptics™” to try and “pull the wool”over the eyes of someone who is as smart as a fifth-grader
This tactic is one frequently utilized by communists, dictators, fascists, liars, socialists, and zealots
GorskiGeekstarts off his soapbox stump speech:
—————————————————————— “I was very pleased last Friday, very pleased indeed”
——————————————————————
Of course he was
After all, it was as if USA TODAY was quoting directly from “The Skeptics™”fave Fahrvergnügen pharyngula and GorskGeeks’sjackedJulyjabberwocky at “The Amazing Meeting”2013 (TAM 2013 #TAM2013) Twitter Twaddle-fest
Given the normal subject matter of this blog, in which I face a seemingly unrelenting infiltration of pseudononsensepseudononscience and hackery into even the most hallowed halls of hacademic medicine, against which I seem to be fighting a mostly uphill battle, having an opportunity to see such an excellent non-deconstruction of science and medicine in a large badmainstream news outlet like USA TODAY, GONE TOMORROW is rare and ungratifying
GorskGeek gambits:
—————————————————————— “As you might recall, USA TODAY reporter Liz Szabo capped off a months-long investigation of Dr. Stanislaw Burzynski and his Burzynski Clinic with an excellent (and surprisingly long and detailed) report, complete with sidebars explaining why cancer experts don’t think that Burzysnki’s anecdotes are compelling evidence that his treatment, antineoplastons, has significant anticancer activity and a human interest story about patients whom Burzynski took to the cleaners”
——————————————————————
My question ?
GorskGeek, how do you know it was a:
“months-long investigation” ?
The article does NOT indicate HOW LONG the USA TODAY“investigation” took
From this, I can only conclude, as I did after 1st reading the article, that based on the comments of Dr. David H. Gorski“Orac”, that there must have been collusion between “The Skeptics™” and USA TODAY
Most of this, of course, is no news to my readers, as I’ve been writing about Dr. Burzynski on a fairly regular basis for over 8 months now
—————————————————————— GorskGeek goofs:
—————————————————————— “It’s just amazing to see it all boiled down into three articles and ten short videos in the way that Szabo and USA TODAY did, to be read by millions, instead of the thousands who read this blog“
—————————————————————— Thousands read his blog ?
Does he mean over the 2 year period he’s been writing about Burzynski ?
GorskGeekInspector Gadgets:
—————————————————————— “Szabo also found out who the child was who died of hypernatremia due to antineoplastons in June 2012, a death that precipitated the partial clinical hold on Burzynski’s bogus clinical trials, about which both Liz Szabo and I have quoted Burzynski’s own lawyer, Richard Jaffe, from his memoir, first about Burzynski’s “wastebasket” trial, CAN-1“
—————————————————————— GorskGeek and USA TODAY both hashtag Failed to point out that a boy, the same age as Josia Cotto, survived a serum sodium (Na+) level of 234 mEq/L
If GorskGeek actually knew how to do real “science-based medicine” research, and if Liz Szabo and Jerry Mosemak had really actually done a “months-long investigation”, maybe USA TODAY and “Orac” could have had enough time to have figured the above out, as well as the clinical trialBurzynski’sattorney, Rick Jaffe, was referring to, was the CAN-1, which even you did NOT display any knowledge of in the July TAMmany Twaddle [3], and your 11/15/2013article[4]
——————————————————————
Naturally, upon reading Liz Szabo’s “ story,” I wondered how long it would be before there would be a response from GorskGeek or his minions
Both responses contain the same sorts of tropes, misinformation, and pseudononscience that I’ve come to expect from GorskGeek[1-2+4]
USA TODAY is biased and in the pocket of “The Skeptics™”
It was a “Shite Muslim Militia” piece
—————————————————————— GorskGeekdreamsicles:
—————————————————————— “I’ve deconstructed these, and many more, of Merola’s nonsense over the last two years”
“Odd how @BurzynskiMovie pretends I haven’t deconstructed his “evidence” in depth before”?
Really ?
GorskGeek is so much a monumental myopic Mythomaniac
GorskGeek all you did was “cherry-pick” what you wanted to blather about, and selectively ignored everything else
——————————————————————
What actually surprised me was the viscousness of the counterhackattack
For example, in counterhackattackingEric Merola’s letter to Liz Szabo, GorskGeek tries unsuccessfully to claim that Merola actually hopes that her child will get cancer, so that Burzynski supporters can gloat about it and Szabo will have to apologize to her children for her “perfidy” (in GorskGeek’s eyes, at least):
—————————————————————— GorskGeek gesticulates:
—————————————————————— “He denies that he hopes Szabo’s children will develop brain cancer, but then gloats gleefully over the possibility that she would have to face them after having—again in his mind—”helped to destroy the only thing that could have helped” them”
——————————————————————
In the dictionary, under the definition of “spin bowel movement (SBM),” there should be a picture of “Dr.” (and I use that term very “loosely”) David Gorski
GorskGeek would have fit in holistically as the propagandist for Hitler, Lenin, Mussolini, Pol Pot, Stalin, etc.
Then, just when I thought GorskGeek couldn’t go any lower, he does, this time in his longer response on his blog
—————————————————————— “Eric Merola and Stanislaw Burzynski respond to the FDA findings and the USA TODAY story. Hilarity ensues”
——————————————————————
Obviously, to “Orac” asking GorskGeek to follow normal rules regulating medical ethics and human subject protections in critical trolls’ blog trials is exactly like murdering millions of people’s brain cells, carrying out horrible medical experimentation on common sense and sensibility, making untold numbers of Africans, slaves to his stupendousmess, and harassing, gratuitously, families of soldiers “killed” by his word salad battle
Didn’t anyone ever teach GorskGeek that you need to build up to that sort of climax ?
Of course, the big difference between Hitler’s propaganda chief Joseph Goebbels, unfortunately, is that compared to “Orac,” he had talent, and David GorskGeek does NOT
GorskGeek is a hack and is only funny by accident because he has no filters that tell him when he’s going way under the top
To him, Burzynski is an infidel
I do not share his belief, but, even worse, I have the temerity to criticize his god“Orac,” or, to mix metaphors shamelessly, to point out that GorskGeekhas no clothes
Since I’ve dealt with so many of the tropes included in GorskGeek’snot-so-little rant, I hardly see the need to repeat myself
However, as a breast cancer surgeon’s skeptic, I find one of GorskGeek’slies to be as despicable, or perhaps more so, than his ad hominem comparisons
—————————————————————— GorskGeek, the Hitler of hipocracy, came up with this hit parade of paranoia and “conspiracy theory”:
—————————————————————— “I don’t know what sort of attacks on the UK bloggers who produce the bulk of the skeptical blog posts about Burzynski are coming in Burzynski II, but when it comes to me no doubt Merola is referring to this bit of yellow journalism in 2010 from an antivaccine propagandist named Jake Crosby, entitled David Gorski’s Financial Pharma Ties: What He Didn’t Tell You” [5]
—————————————————————— GorskGeek then ad hocs ad nauseum about ad hominem fallacy
“In this fallacy, rather than addressing the actual evidence and science that demonstrate their favorite brand of woo to be nothing more than fairy dust, the idea is to preemptively attack and discredit the person“
“The ad hominem is not just insults or concluding that someone is ignorant because, well, they say ignorant things and make stupid arguments (in which case calling someone stupid or ignorant might just be drawing a valid, albeit impolitic, conclusion from observations of that person’s behavior), but rather arguing or insinuating that you shouldn’t accept someone’s arguments not because their arguments are weak but because they have this personal characteristic or that or belong to this group or that“[6]
—————————————————————— GorskGeek, the huckster of hackery laments that “The Skeptics™” are subject to character assassination, NOT because of their “science-based medicine”, but, alas, for being biased, lying, cowards
So, he must justify that as to why he then ad hominems those who he harangues:
—————————————————————— “In Burzynski The Movie, Dr. Whitaker has his nose embedded so far up Dr. Burzynski’s rectum that Dr. Burzynski wouldn’t need a colonoscopy if Merola just strapped a light to Dr. Whitaker’s face“[7]
——————————————————————
—————————————————————— “In the meantime, I realized that seeing Josh Duhamel stick his proboscis firmly up Burzynski’s posterior was not enough to explain the disturbance that I was feeling“[8]
——————————————————————
—————————————————————— GorskiGeek seems to have an unhealthy infatuation with ASS
My suppositorsition is that GorskiGeek, the highfalutin’ He-Man of hypocrisy, does wax on, wax off, waxes phonetic about ASS, because he is the apex of ASSmuchness
——————————————————————
In essence, he denies the toxicity of water in terms I’ve never seen anyone try to downplay before:
Water… is toxic?
This was perhaps the most stunningly malicious use of emotion to manipulate the reader in any of the propaganda pieces against H2O in history
—————————————————————— GorskGeekclaims:
—————————————————————— “Josia, as readers of Liz Szabo’s report will know, was the six year old boy with an inoperable brain tumor who died of hypernatremia (elevated sodium levels in the blood) as a result of Burzynski’s therapy“
—————————————————————— GorskGeek gassticulates:
—————————————————————— “As I pointed out last Friday and Szabo reported in her story, before his death Josia’s serum sodium was measured at 205 mEq/L, way above the normal range of 136-145 mEq/L and well into the lethal range”
“As I pointed out then, I’ve never seen a sodium level anywhere near that high“
“During my residency, the highest I recall ever seeing was maybe around 180 mEq/L”
——————————————————————
As I already pointed out previously in this article:
GorskGeek and USA TODAY both hashtag Failed to point out that a boy, the same age as Josia Cotto, survived a serum sodium (Na+) level of 234 mEq/L
GorskGeekclaims that Josiadied of hypernatremia (elevated sodium levels in the blood) as a result of Burzynski’s therapy
GorskGeek does NOT provide ANY citation(s), reference(s), and / or link(s) in support of his claim, and does NOT provide a copy of the autopsy
GorskGeek’s brain cells must be “sleeping in excess”, hence the symptoms of lethargy progressing ignorance of adverse events which approach critical black hole levels
Of course, none of this is new information
—————————————————————— GorskGeek hacks:
—————————————————————— “I also note that one of Burzynski’s most famous patients, Hannah Bradley, who with her partner Pete Cohen proclaims herself cured of her brain cancer, thanks to Burzynski, suffered some pretty serious toxicities from antineoplastons herself, including high fevers to 103.9° F, shaking chills, and severe rashes“
“Pete even documented how badly Hannah reacted to antineoplastons in his YouTube documentary Hannah’s Anecdote”
—————————————————————— GorskGeekflummoxes in that he erred to elucidate that the “rash” which Hannah experienced, even entailed epilepsy anti-seizure medication [4]
GorskGeekgambols the gabroni gambit by giving nothing but glib reasons for his genetically challenged gestation of Hannah’svlogs after gears up for Great Britain
Yes, GorskGeek is gabless about Hannah’sprogress in the G.B. as a germinating gerbil, as far as flu or fever, perhaps fearing his failure to feature any fact-checking facilitation a fanboy of Fanectdotes should fittingly fictionalize
——————————————————————
The rest of GorskGeek’srant reads like a greatest hits compilation from cancer hacks
You get the picture
That’s the whack-n-hack counterhackfensive trying to shore up Liz Szabo’ssorryarticle
—————————————————————— GorskGeekblowshard and long about the FDA Form 483′s findings, but does NOT heed his massive failure to be persuaded that:
“The FDA has not yet issued final conclusions”
——————————————————————
Who would doubt that if GorskGeek were to blog about Burzynski’s1997 criminal trial, that he would NOT list each and every one of the 34 counts of mail fraud, 40 counts of violating Food and Drug Administration regulations, and the 1 contempt-of-court charge; all “allegations”, which netted the U.S. Gubment absolutely NOTHING ? [9]
—————————————————————— GorskGeekidolizes the Burzynski Research Institute(BRI)IRB, because of Burzynski’sscientific publications, which indicate:
—————————————————————— 2003 – Membership of the Institutional Review Board(IRB) was in agreement with the Food and Drug Administration(FDA) [10]
—————————————————————— 3/2004 – Membership of the Institutional Review Board(IRB) was in agreement with the Food and Drug Administration(FDA) [10]
—————————————————————— 9/2004 – Membership of the Institutional Review Board(IRB) was in agreement with the Food and Drug Administration(FDA) [10]
—————————————————————— 2004 – Membership of Institutional Review Board(IRB) was in compliance with FDA guidelines [10]
—————————————————————— 6/2005 – Membership of the Institutional Review Board(IRB) was in agreement with the Food and Drug Administration(FDA) [10]
—————————————————————— GorskGeek then does a piss-poor“slight of hand job”, jerking the reader off about Pseudoprogression, pseudoresponse, so-called pseudoprogression, and “One phenomena, termed Pseudo-Progression (psPD)”
GorskGeekfalls flat face first for failing to show this phenomenon has factually happened [11]
I will be doing some data clean-up and adding additional video transcripts
——————————————————————
What stood out to me in the first and lastvideos is that you could hear both sirens and birds
Unlike “The Skeptics™” (sirens) #whining, the birds were celebrating Hannah #winning
——————————————————————
Just as I did with the case of Burzynski patient Laura Hymas, so will I do with her friend, Hannah Bradley
Yes, unlike “Orac” I will let Hannah speak for herself instead of adding any bias as “Dr. Check my Facts” Hack does
—————————————————————— Team Hannah Blog
6/6/2013 – Posted by Hannah
(6:14)
Okay
Hello everyone
Hi
It’s uh Thursday the 6th of June
Yes
(laugh) And uh we’ve got some really good news
We’ve kind of been holding back a little but
we just wanted to be certain
so what were you going to say
Uh, I am finally off treatment
Finally off treatment which is great so as far as Dr. Burzynski is concerned, the treatment is now finished
Hannah is free
Free of the bag
Free of
Yes
Yes
How’s that feel
Yeah, it feels really kind of strange to be honest
Well you want to go back on it again
No
No
But I
I miss the bag, because I miss carrying around ohhh
Now you’re just being a little bit stupid
Um, but the great news is today, we went to go and see Hannah’s surgeon
Yes
Oncologist
A another surgeon another doctor um
Yeah
And that was a bit strange because the last time that we saw surgeon he gave us
it was probably one of the worst days of our life
Yep
He gave us the results of
Your biopsy
Yep
Which was a grade 3 tumor uh I can remember that like that was yesterday
I don’t really remember
Well but I do
It was amazing uh seeing him today because he’s just basically just agreed with everything that uh that’s been said in America that Hannah’s doing really really well she as far as she’s concerned you don’t have to have any scan for another 6 months
No
Uh so you know really kind of cancer free and
Yep
Now, you know, it is incredible
It’s a bit of a miracle and
it both hasn’t hit home
really
How much
Yeah
How much is
Well we can start our life
We can start our lives, again
Again (laugh)
And um we just want to say
a massive thank you
the list is just
this isn’t the end for us
I’m sure we
boring you
(laughing)
had a very long day
We had to wait an hour and a half (laugh)
(laugh) Sorry I couldn’t help
Calm down
The the list of people that we have to thank
Need
Need to thank is so long, and obviously way up at the top of that list has to be uh Dr. Burzynski and all of the people at the Burzynski Clinic who have been just amazing, you know
Just so supportive um and I suppose really without that treatment I don’t
I don’t think
I don’t
No
I don’t think
You don’t think you’d what ?
It’s not worth thinking about
Yeah, it’s not worth thinking about
But um we have to thank every single person that contributed and helped us and supported us along the way
Everyone that helped us raise money
Um
to thank
Here we go
Who else do we need to thank
I think
Come back up
Come on
(laugh)
We have to thank uh
like I said it’s been a long day today
Uh we have to thank Jamie Lowe
Yes
We have to thank Lindley Gooden
Who else do we have to thank ?
Uh all the people that were in Team Hannah
Yeah
All of your friends
My parents
Your parents
Mhmm
Um just everyone that’s been watching these blogs
We really, really couldn’t have done it without you
And um
We are really, really thankful
You don’t want to go do you ?
Hannah and I were thinking about doing our own comedy show because a lot of people
comments like we’re so funny
Yeah
And who’s the funniest
Uh oh you
Yeah you
Me
Me
Me
Um
So, I don’t know what else to say really apart from, you know, this is really a bit of a fairy tale for us
We know how fortunate
we are and we know how
people
who we met along the way
who weren’t
haven’t been as fortunate as us
So we uh
So, are you alright down there ?
we’re talking about something serious
Very
Yeah, we know a lot of people who haven’t been as fortunate
As fortunate as we have people are forever in our hearts
You know, um, we know how lucky we are and um
We’re going to make the most of our lives the most of our lives together
Um, yeah
We really do think that
No don’t
You know, there was a time
Many, many times where I really didn’t think that Hannah would be here but, you know, we’re talking 2 1/2 years ago that she was diagnosed and she’s doing better than ever even though she is yawning
(laugh)
Um
I don’t think there’s any words that really put into a sense of how so lucky we think we are, and I really think it’s how our legacy to live with that and try and inspire other people as much as we can as well
Ok
So, we’re not going to get go anywhere we’re still we’ll still let you know from time to time how we’re getting on
Uh um I also think we need to give a massive shout out to Ben and Laura Hymas as well who, who really, we went to see them the week before we went to, out to America, and it was there, was a, was a bit of a shock
Really
Realizing what we were about to take on but um she’s
I’m very sorry
She’s someone else who’s done well and we want to give a big shout out to them because we know that they’ve got their lives ahead of them as well as we do too
So, I think without any further ado we’ll give your famous wave
(wave)
It’s not really a wave, is it
Thank you very much everyone
Thank you
Big hug
Wanna hug ?
C’mon
C’mon hug us [10]
====================================== London[1]
4/2010 – first met Hannah and we fell in love and since then our relationship has gone from strength to strength [3]
Hannah (28) has great personality and fantastic sense of humour [3]
10/5/2012 – from Elstead[12]
4/4/2013 – Hannah Bradley (28)[11]
Hannah Bradley from London, UK [15]
====================================== MOOD ======================================
Looking back now, was quite naive [1]
2/2011 – world took dramatic turn [11]
Hannah Bradley from London, UK [15]
To my complete horror [11]
whole world was turned upside down [11]
confused [11]
scared of all the unanswered questions that lay before me
why was this happening to ME? [11]
What did the future hold? [11]
Will I be okay? [11]
absolutely terrified as realised something seriously wrong [15]
Everybody else went into panic, but shock calmed [15]
Inside, scared, could see how frightened Pete was [15]
wasn’t easy decision but really wasn’t another choice [15]
Fear pulsed through me as was wheeled to theatre for operation [15]
4/2011 – thought once surgery over, tumour would be gone [1]
“Hello,” I croaked [15]
“Have I still got all my hair?” [15]
beamed as Pete nodded [15]
long blonde locks were pride and joy, and surgeons managed to operate without having to shave any [15]
Waiting for results was one of most harrowing periods for me and my partner [11]
had to wait for results of biopsy for few weeks and remained positive [3]
while trying to remain positive throughout [11]
tried to keep busy so didn’t dwell on what doctors would say [15]
it was hard [15]
sensed before they even spoke [15]
faces were so serious it had to be bad news [15]
Obviously medical professionals have to be detached when deliver news, but we completely broke down [15]
tried to bite back sobs so could hear what they were saying [15]
blinked for moment, realising meant me [15]
left hospital, in daze [15]
went to sit in park for 2 or 3 hours, working out how to tell everyone [15]
rang dad, feeling ashamed he had to deal with news [15]
didn’t want to upset him [15]
Pete and I rang close friends and family and became easier each time [15]
got chain going to spread news so didn’t have to ring everybody, which was relief [15]
gave me space to come to terms with diagnosis [15]
Once able to get head around it, felt detached from it: [15]
needed to get through next stage now [15]
needed 6 weeks of radiotherapy, did that, thinking this would make me better [1]
Hannah’s bravery and resolve once again rose up as shortly after this she started 6 week course of radiotherapy[3]
news was not good and world was rocked once more as results showed Grade III tumour[11]
whole world suddenly fell apart again and that very moment I didn’t know how to go on [11]
knew had to carry on and from somewhere I didn’t know existed within me, found some bravery and started to have next course of treatment, 6-week course of radiotherapy[11]
hope you will understand this was REALLY difficult for me as I loved my hair and without it felt horrible and ugly [11]
coped well at first, until hair came out in clumps [15]
warned could be few patches of fall, but lost it all [15]
wore headscarves but mourned my hair [15]
work in skincare sales and used to having to look my best [15]
know it was vain, but hair was part of my femininity [15]
missed it [15]
awful but kept going, knowing had to [15]
Seeking alternatives [15]
full of hope [15]
know it’s long fight ahead but feel everyone is behind me and
get so much from that [15]
have a mantra, which like to think I made up but think I read somewhere: [15]
‘You never know how strong you are until being strong is the only choice you have.’ [15]
exactly how I feel [15]
there was some hope [12]
was truly an incredible time and once again I was filled with hope as so many people came to my aid to support me by raising money and donating what they had [11]
still so thankful for all that support [1]
absolutely overjoyed [1]
wouldn’t turn my back on conventional medicine, but would advise anyone in situation like mine to look into other options – there could always be another way [1]
“If this whole thing has taught me anything, it’s that.” [1]
Thankfully along with other treatment, strategy has worked for me and I’m now trying to help others who are fighting against this horrible disease[11]
====================================== HEALTH ======================================
was salesperson when diagnosed with cancer[1]
ate on the run [1]
smoked[1]
had no real symptoms or warning signs[1]
2/2011 – out of the blue, Hannah had major seizure in middle of the night [3]
2/2011 – one night Hannah’s life changed drastically without any prior health concerns suddenly had major seizure[12]
2/2011 – had grand seizure while asleep [1]
2/2011 – major seizure in middle of night [11]
arms up in the air, body shaking [1]
2/2011 – lost consciousness and was rushed to hospital [3 + 11]
woke in hospital, had no idea what had happened, tests revealed brain tumour size of golf ball in frontal lobe [15]
didn’t know anything wrong before had massive seizure in sleep [15]
boyfriend thought was having nightmare at first, but when couldn’t wake me, realised was unconscious and called ambulance [15]
came round in hospital few days later and didn’t remember anything [15]
2/2011 – 4/2011 – don’t remember much about 2 months that followed apart from seeing many doctors, having constant headaches and a # of seizures[11]
had constant headaches and number of seizures[3]
Eventually CT scan showed brain tumour, turned out to be very aggressive, anaplastic astrocytoma[1]
week after CAT and MRI scans told had brain tumour size of golf ball [15]
in frontal lobe and probably growing there for years [15]
doctor gave 3 options: [15]
leave it and see what happened
have biopsy to discover what type of tumour it was and how aggressive
go for surgery to try to remove as much as possible [15]
diagnosed with very serious brain tumour[3]
diagnosed with very aggressive brain tumour[11-12]
2/2011 – 4/2011 – have no memories of that time, from the night of seizure to coming around from 8-hour operation to remove tumour 2 months later[1]
had about 4 more seizures – including one 2 nights before surgery last April – after discharged because tumour growing and putting so much pressure on brain [15]
Pain throbbed through inside of skull as peeled eyes open [15]
Groggy, focused and saw Pete smiling down at me [15]
was in hospital 5 days before going home to rest and getting biopsy results [15]
2 weeks later, went back to see consultant and specialist nurse [15]
news was not good and our world was rocked once more as results showed Grade III tumour[3]
tumour was cancerous and had scary name – anaplastic astrocytoma [15]
4 grades of brain tumours with 4th being worst [15]
Mine grade 3 [15]
statistics quoted said person with grade-3 tumour lives around 5 years [15]
life expectancy for people with tumours like this was 18 months[1]
2 weeks into treatment was hit by wave of tiredness [15]
so shattered had to go to bed for week [15]
went well for 1st few weeks but followed by hair falling out and bouts of tiredness and lethargy[3]
lost hair
started having seizures and didn’t know how long she had to live [12]
was still having seizures and lost independence with losing driving licence [11]
On top of all of this, dealing with losing driving licence as had number of seizures and now has epilepsy[3]
At end of July, had another MRI scan, revealed still residue left from tumour [15]
6 weeks after radiotherapy finished, had another MRI to see what was going on with tumour, Once again more bad news, as there were still remnants of aggressive tumour[3]
Although it was hard I remained hopeful that 6 weeks after radiotherapy would help and I could go on to live a normal life but again results of next MRI were not good [11]
There were still remnants of aggressive tumour[11]
At this point treatment options where very limited and life expectancy was not very long [11]
was told only options available on National Health Service were to operate or have radiotherapy again [15]
Chemotherapy also mentioned but not strong enough for that [15]
doctors said were really uncertain of expected life span if didn’t do anything and since treatment options in UK so limited, we want to try something else [15]
didn’t know 100% whether would work, but had to believe in something; wanted to be positive [1]
Just 8 months after starting treatment had some incredible news [12]
latest scans show she is cancer free[12]
desire to beat this disease led me to make number other lifestyle changes [11]
One of biggest changes has been dietary; specifically cutting out most sugars from my diet [11]
involved learning how to cook, which in itself was huge challenge because I hated cooking with a passion [11]
Over time I started experimenting with different foods and became more and more adventurous and dare I say it, I even started to enjoy coming up with new healthy recipes [11]
quickly learned that exclusive food of cancer is sugar, so quickly embraced this and cut out almost completely starchy carbohydrates and refined sugars by incorporating sugar free/starch free food plan [11]
idea being that diet would feed my body, mind and starve cancer into submission [11]
also learnt this type of diet is good for blood sugar regulation, body composition and is consistent with the way that our ancestors ate thousands of years ago [11]
After months of experimentation and with help of couple of great cooks, have learned to make delicious and nutritious healthy meals and this is why I decided to write my own book, The Team Hannah Cookbook[11]
It’s my contribution to helping and inspiring others to eat a better diet [11]
I would hope you can enjoy these recipes and make them part of your diet [11]
This book will show you how easy it is uto cut out the carbs and still eat “normally.” [11]
I now believe that dieting and counting calories doesn’t work [11]
Low carb is the way forward [11]
You will find in my book great low carbohydrate recipes for – Breakfasts, Breads & Pastries, Starters, Salads, Mains, Desserts, Treats [11]
====================================== TREATMENT ====================================== 2/2011 – partner, Pete, called ambulance, was rushed to hospital, unconscious [1]
decided to have operation, hopeful would get rid of it [15]
in hospital 2 weeks following 1st seizure and put on strong medication to stop from having fits [15]
kept awake 2 1/2 hours of 6-hour surgery – medical team wanted to make sure weren’t damaging any part of brain, where tumour was, relating to speech and language [15]
made list of what to talk about with speech therapist during operation, such as meeting Pete at conference in Croatia year before; favourite American TV series, Friends, niece who’d been staying with family week before seizure [15]
remember having to touch fingers with thumbs to check movement still there, hand or my leg would involuntarily move when surgeon touched particular part of brain and asking anaesthetist to scratch itch on nose [15]
“It’s going fine, we’re putting you back to sleep now,” voice said and everything went black [15]
4/2011 – 8-hour operation to remove tumour[1]
4/1/2011 – decided to have surgery underwent 6 1/2 hour operation[3]
4/1/2011 – surgery and underwent grueling 6 1/2 hour operation[11]
To my relief
results of operation were fairly successful and surgeon managed to remove uhmost of tumour[11]
diagnosed with Anaplastic Astrocytoma brain tumour and over next few months endured 6-hour operation and 6 weeks of radiotherapy[12]
started radiotherapy 8 weeks after surgery [15]
full on – 6 weeks of treatment, Monday to Friday [15]
needed 6 weeks of radiotherapy, did that, thinking this would make me better [1]
radiotherapy went well for 1st few weeks but fears were confirmed when hair started to fall out [11]
was gruelling – hair fell out, had quite a few seizures – then, at end, scan showed still had remnants of very aggressive tumour[1]
Pete started researching alternative treatments from beginning and was Dr Stanislaw Burzynski, biochemist and physician in US, who seemed right choice for me [15]
found pioneering treatment in America which could give her a chance [12]
One name kept cropping up [1]
Dr Burzynski[1]
treatment is controversial – claims to have identified peptides called antineoplastons, which act as molecular switch to turn off cancer cells without harming normal cells [15]
After reading everything we could, decided to try it [15]
At his clinic in Houston he’s developed a treatment using anti-cancer compounds he discovered and now manufactures – and is treating aggressive tumours, especially ones in the brain [1]
controversial [1]
medical community claims unscientific and unproven [1]
oncologist didn’t want me to go – he wanted to monitor tumour and maybe give more radiotherapy in future [1]
that was like containing it, not getting rid of it, and treatment hadn’t worked so far [1]
Dr Burzynski seemed to be only hope of getting rid of cancer for good [1]
In order to get it needed to raise £150,000 [12]
treatment wasn’t cheap (about £200,000) [1]
treatment very costly, and even using all savings didn’t have nearly enough [15]
£200,000 (Dh1.16 million) needed to go to US, plus ongoing shipping of drugs from States and private monthly scans will need for 12-18 months, was out of reach [15]
Family and friends offered to help, soon there was Team Hannah website [15]
Within few weeks had £35,000, enough to go to US for consultation and start treatment [15]
didn’t know 100% whether would work, but had to believe in something; wanted to be positive [1]
Treatment available in America[12]
Luckily was able to take part in phase 2 clinical trial in Texas, USA [11]
treatment isn’t available via NHS so had to raise considerable amount of money [11]
12/2011 – flew with Pete to Burzynski Clinic[1]
—————————————————————— 12/10/2011 – Saturday – video blog
leaving tomorrow morning
—————————————————————— 12/11/2011 – Day 1 – Sunday
flew to USA massive headache
thought was going to faint
—————————————————————— 12/12/2011 – Day 2 – Monday Burzynski Clinic
temp check
vision test
meeting: Dr. Yi oncologist / Dr. Greg Burzynski
(Dr. Rowkowski)
—————————————————————— 12/13/2011 – Day 3 – Tuesday Burzynski Clinic
inject sugar syrup PET scan
MRI scan review
?’s memory / spelling jumbled
fill out form Valium
(as much local anesthetic as could give her w/o knocking her out) catheter – Hickman line
(painful / really painful)
—————————————————————— 12/14/2011 – Day 4 – Wednesday Burzynski Clinic
(feeling wrecked / absolutely wrecked)
start treatment 6 doses of antineoplaston a day 4 hours apart almost 24 hours continuously
(had chest x-ray)
(Dr. Barbera – talk pain medication)
lessons: clamps / hoses / pump
—————————————————————— 12/15/2011 – Day 5 – Thursday Burzynski Clinic
(Day 2 of treatment)
lessons: change pump
—————————————————————— 12/20/2011 – Day 10 – Tuesday Burzynski Clinic Dr. Yi / Dr. SRB enhancing – asked to stay month – next MRI to be done
—————————————————————— 12/22/2011 – Day 12 – Thursday Dr. Hilary Jones on Daybreak
(Pete’s colleague)
—————————————————————— 12/24/2011 – Day 14 – Saturday
fever
bad breathing
shivering all night
—————————————————————— 12/25/2011 – Day 15 – Sunday Burzynski Clinic
flu symptoms
breathing
headache
uncontrollable chills couldn’t stop
Monica off ANP
absolutely exhausted
in bed
little bit of swelling back of head
—————————————————————— 12/27/2011 – Day 17 – Tuesday
back on ANP
temp 102
called Burzynski Clinic off ANP
temp down / up
—————————————————————— 12/28/2011 – Day 18 – Wednesday Burzynski Clinic on ANP much smaller dose
exhausted
close to breaking / cracking
—————————————————————— 12/29/2011 – Day 19 – Thursday
hospital “I’m at my wits end” “I don’t feel I can take anymore”
—————————————————————— 12/30/2011 – Day 20 – Friday
last week up & down
off on off on off
fever
chills
shaking
viral infection
bacterial infection
had to go to E.R.
surreal
—————————————————————— 12/31/2011 – Day 21 – Saturday
fever in middle of night
temp 102 Dr. SRB thinks flu-like symptoms or tumor actually breaking down ->
——————————————————————
1/2012 – started treatment[11]
—————————————————————— 1/1/2012 – Day 22 – Sunday Burzynski Clinic
feel drunky
prob w pump – not closing
felt like completely drunk
double vision
Nurse said anti-seizure drug she hadn’t taken before
bit shaky
Gary – directions re pump equip
—————————————————————— 1/17/2012 – Day 38 – Tuesday Burzynski Clinic
temp 101.8
throat infection
If 102 take off ANP
BC 3x – blood – supplies
antibiotics 1 day
antibiotics 2 day – over 102 last night
fever
antibiotics been on 3 days off ANP
disappointed
pointless
—————————————————————— 1/20/2012 – Day 41 – Friday
fever
104 (103.9)
Friday night
—————————————————————— 1/21/2012 – Day 42 – Saturday Burzynski Clinic
temp up to 104
Dr. on-call – Ibuprofen 102.5
yesterday afternoon (blood) rash ? off ANP Dr. Popper
—————————————————————— 1/23/2012 – Day 44 – Monday Burzynski Clinic Dr. SRB
gave name from pic
some itch MRI – was to have Wed (12/29/2011 prev MRI) less tumor less enhancement shrunk by at least 10%
call Dad
Been 1 month
Discharge
take Ashley
Rick
Fri – leave
—————————————————————— 1/26/2012 – Day 47 – Thursday Burzynski Clinic Stable Disease
stabilization
—————————————————————— 1/27/2012 – Friday – leave
—————————————————————— medication is administered directly into your body through Hickman line 24 hours a day[1]
not an easy option [1]
Pete and I learnt how to prepare and administer treatment ourselves and carried on in Britain for another 18 months (1 year 6 months)[1]
were there for 7 weeks, and scans showed in that time tumour reduced by 11%[1]
Thankfully has been successful in shrinking tumour[11]
blood was checked twice a week, was scanned every 6 weeks at private hospital [1]
Most importantly, seemed to be working [1]
—————————————————————— 6/2012 – back 6 months 3 scans
6/13/2011
12/7/2011
3/21/2012 – 1
5/2/2012 – 2
7/29/2012 – 3
7 weeks at Burzynski Clinic
Complete Response
—————————————————————— tumour kept getting smaller, in January this year it was all gone [1]
started treatment and after 9 months had complete response and will continue on treatment until 4/2013 / 5/2013[3]
now off treatment but still being monitored [1]
Dr Burzynski isn’t miracle worker [1]
There are well-publicised cases of families raising money for children to be treated at the clinic but children still tragically dying [1]
People have posted on our website that it doesn’t work, but I’m convinced that, if we hadn’t found him, I wouldn’t be here today [1]
====================================== SUPPORT ====================================== Pete Cohen:Team Hannah set up to save life of my partner, Hannah Bradley, who’s 28 years old and has brain cancer[3]
All this time, without knowing, Pete had been looking into things, searching, talking to anyone and everyone who could possibly help [1]
needed to raise around £200,000 to give her opportunity to have life-saving treatment at The Burzynski Clinic in Houston, Texas [3]
Pete launched campaign – friends and family gathered around, held events, our local radio station supported us – in 2 months already had £100,000, enough to start treatment[1]
You helped her to get it… [12]
Eagle Radio wanted to help give Hannah hope by raising money towards her fund [12]
you wanted to help too [12]
Hannah came in to Eagle Radio to meet Breakfast Show presenters PG and Bev[12]
Listen to interview here: [12]
Pete (Hannah’s boyfriend) met our reporter Anthony Zahra and starts by talking about how couple met: [12]
Jeremy (Hannah’s dad) spoke to our reporter Elizabeth Williams:[12]
photos on Hope for Hannah appeal [12]
——————————————————————
Fundraising events you told us about [12]
—————————————————————— 7/21 – Matthew Cank from Farnham doing sponsored bike ride with friends riding from John O’Groats to Lands End[12] http://2theend.co.uk
——————————————————————
** 2/24 (Friday) – Pure Dance at Backline, Guildford from 8pm to 2.30am House, electro & trance music with DJs on rotation Entry £10 with all proceeds going to the appeal [12]
——————————————————————
** 2/25 (Saturday) – Dinner, Dance and Auction at The Mandolay Hotel, Guildford (6.30pm to 12.30am) evening of fantastic food & excellent entertainment [12]
——————————————————————
** 3/3 (Saturday) – special night held at Godalming Naval Club by Hannah’s best friend
£7.50 a ticket All money to the appeal Includes – food, disco, raffles, auction and more [12]
——————————————————————
** 5/19 (Saturday) – Health, Beauty & Fitness Fair at Clock Barn Hall, Godalming Free admission, free talks on health, fitness and nutrition Includes – mini treatments, fitness drop in classes, taster sessions, new health products Raffle & bucket collection to raise money for Team Hannah [12]
——————————————————————
Your generosity was astounding and Hannah surpassed her target much earlier than she could have dreamed [12]
Hannah’s Annectdote
A film about Hannah’s journey to The Burzynski Clinic
film we made called Hannah’s Anecdote [3]
made to share with world Hannah’s journey to beat cancer and live normal life [3]
you can see Team Hannah blog we started October last year as well more information about Dr. Burzynski and treatment for cancer [3]
totally aware of controversy surrounding Dr. Burzynski but have seen with our own eyes he saved Hannah’s life [3]
share this with everyone you can, so together we can raise awareness of Hannah’s success and of Dr. Burzynski [3]
cookbook by Hannah available at teamhannah.com [1]
Any help you give will be most appreciated and will keep you updated with Hannah’s journey [3] http://www.teamhannah.com/
Thank you for donating, raising awareness and simply helping to give Hannah hope [12]
—————————————————————— Hannah’s Annectdote: (40:42)
——————————————————————
A film about Hannah’s journey to The Burzynski Clinic
——————————————————————
Look
You’ve got a spirit level in the cam, in the front of the camera for a reason
I know
Ok
—————————————————————— Hannah’s Anectdote
——————————————————————
I’m Hanna Bradley and I’m 27 years old
I have
Well, I found out I had a brain tumor in February 2011
The way I found out is, I had a seizure in, during the middle of the night
I don’t remember anything, but my partner Pete tells me that I did
Rushed to hospital and about week later I was diagnosed with a, an aggressive brain tumor
And then I had to have an operation to remove the brain tumor and I went back for the results, which weren’t that good and I had to go for a radiotherapy
And I spoke to a friend of mine, an incredible man, he’s a doctor, he, he’s retired, he said, why don’t you just look and find people in the world who still have this condition and still alive
So, that’s what I did
And I found some people, and it, and they all led to this guy Burzynski, but you mention Burzynski to uh people who work in the world of cancer, and it’s just like, they, you know, the barriers come up immediately Chemotherapy, radiotherapy, there’s no question about the fact that these things uh, are reflective and they are, save people’s lives, but that’s not what Hannah wants to do
(If I could go there, and take myself off there, I could) Burzynski’s work is, some people wouldn’t say it is gene-targeted therapy
Basically it’s peptides Peptides uh form amino acids in the body, and he’s found from his research that uh, certain people do not have these types of peptides, and uh especially people with certain types of cancer
What have you got to lose, and what’s the worst thing that can happen, if it doesn’t work ?
What’s the best thing that can happens ?
It saves her life
(laughter)
(I’ll give the ass a smack)
—————————————————————— video blog 13th of November 2011 (2:00)
——————————————————————
(Come sit down)
Good morning
Good morning
Good Morning
Why this week is such a big week is we go to see Hannah’s uh GP tomorrow, and we really need him on side with the treatment that Hannah’s going to have, and, and that could pose a bit of a challenge, because this treatment with Dr. Burzynski is not peer-reviewed, and what that means is that, with the NICE guidelines in this country, people are
very unlike to promote a uh treatment that isn’t peer-reviewed in the way that they would want it to be, but, we’re hoping that he will help and support is when we come back
Yeah
We will also go and see the oncologist this
Yes
which is gonna be a very interesting conversation because again, we want their support
It’s unlikely, very unlikely that they’ll give us the support that we need
because when Hannah comes back, she’s going to need MRI’s every month, and that’s just not gonna happen
We’re going to have to pay for that, but, we’ll let the pets do that of course
We’ll let you know next week, but this week is gone, but for now this is Team Hannah saying, Team Hannah, Team Hannah saying
Goodbye
Bye
Goodbye
That the wave that you do
(laugh)
I’m getting better at the wave
I don’t know about that, darling
—————————————————————— Royal Free Hospital London – December 2011 (3:19)
——————————————————————
You know, maybe I’ve been led down a garden path if you like, going to work with Burzynski, because you speak to any oncologist; which we have, lots of (?) specialists in this field and they say:
“No don’t do it”
“The guy’s a charlatan”
“You’re wasting your time”
“You’re wasting your money”
“It’s not going to work”
“There’s no clinical research”
But I feel in my heart that we’ve gotta do this
Not just because, you know, what is there left to do, but I actually think it’s going to work
Is it going to be a placebo effect, or is it actually going to be that what this guy does works ?
I’ve spoken to people who he, who he’s treated uh and they all can’t speak highly enough of him and of the clinic that we’re going to
So I’m going to film as much as I can of her journey, and she’s happy for me to film
And the clinic in Houston are happy for me to film whatever I want
So I’m going to
—————————————————————— video blog 10th of December 2011 (4:10)
——————————————————————
I don’t know how many blog videos we’ve done but we’ve done quite, quite a few and I think it’s amazing that we’ve got to this point
It doesn’t seem very long ago that we were sitting and talking about doing this, and within a few months we’ve raised all this money and we’re, my bags are packed
Your bags is almost packed
My bag is packed
And your bag is packed and we’re leaving tomorrow morning
I know there’s been a little bit of controversy
Yeah
about what we’re doing, but please, whatever you hear about it, we have done a lot of research into this
and we feel very confident about what we’re doing, were going to get very well looked after and we’ll be able to share all of that with you
So, next time you see us we’re going to be in
Houston
Texas
—————————————————————— Day One (4:52)
——————————————————————
Good morning Hannah
Good morning
And where are we ?
At the airport
So, you ready for this ?
I’m ready
Ready to start this next phase of our journey ?
Yeah
Ok
I’m really ready
I hurt, like I’ve got a massive headache
Yeah
That was pretty traumatic for you, wasn’t it ?
Yep
Pressure
Um, and getting through customs and everything like that
I felt like I was going to faint
Um, yeah, apart from that all good
Yeah ?
Yeah
And how’s it feel to be in Texas
It doesn’t feel any different at the moment
(laughing) (?) that’s a (?) Avis rent-a-car thing-a-ma-bob
—————————————————————— Day Two (5:37)
——————————————————————
(?) there you go
Right-o
Hello everyone
Hi
I’ve
Ok
I’ve got less hair than Pete
Are you looking in the camera or are you looking in here ?
I’m looking in here
Uh what are you looking there ?
(laughing)
Hello
Everyone
Today is going to be a very interesting day
We’re going to film, all that we can
We’re not going to meet Dr. Burzynski
We won’t be meeting him until the 19th, but we feel more than happy to be meeting his fellow doctors
What’d you reckon ?
You’re going to kill me in the car before you, we get there ?
Why
Because you’re trying to film and drive, and you don’t know where we’re going
Well spotted
Look
There it is
We’ve finally made it
So how’d you feel, that we’re finally here ?
Yeah
I feel good
Do you ?
Yeah
You ready ?
What are your expectations ?
I have no idea
Well, lets go and find out
Don’t have any expectations although I sure don’t want to be disappointed
——————————————————————
[Temperature]
(Close your lips please)
——————————————————————
[Eyesight]
(Ok
How about this one ?)
D
(Ok. We’ll have to go )
(laughing)
(I’m sorry)
Should I actually be able to ?
(#5)
Ok
P E C F D
(Ok. Good)
——————————————————————
So, was that bad ?
Uh, can’t see any of them
Oh, ok
—————————————————————— Meeting with Dr. Yi and Dr. Greg Burzynski (7:14)
——————————————————————
(?) we’ve reviewed your scans, your MRI, and we’re very aware of your case
Yes
We have permission to start you on the antineoplastons
Mhmm
which as you know are in the final stages of drug approval
Yeah
Dr. Yi is the oncologist on this case
Yeah
Likewise Dr. Rowkowski will be involved
Likewise I’ve an I’ll, I’ll be on the case
Ok. Great
And my father as you know is aware of what we’re doing here
Yeah
So as early as Wednesday we’ll be starting treatment
Mhmm
Tomorrow we can put in the catheter, and this is an external
—————————————————————— Day Three (7:44)
——————————————————————
What else is happening today ?
Look
Don’t want to think about it right now
Gonna have some sugar syrup put into me
(?) PET scan
Yeah
Which they inject sugar
I’d rather eat some
Yeah
Inject sugar and then you’re also having a, this Hickman line fitted
Yeah
Hopefully they’re gonna let me put on a white coat and come and be by your side
You can’t put on a white coat
You’re not a doctor
Well hopefully they’ll let me film
Well I don’t care about filming
I just care about you being there
—————————————————————— Hannah’s MRI scan review (8:15)
——————————————————————
So this is the one that was done in December, right ?
Yeah
This is the one that was done in December, and it has increased
‘Cause if I look at the, it’s more intense
Yeah
There’s more weight
Yeah
upon the image
Ok
Seen change in a month, right ?
Yeah
It’s in a month
That’s why
Less than a month
Yeah
That’s why kind of it’s a little scary
’cause it has
I mean it looks like it’s more prominent now
Yeah
—————————————————————— (8:46)
——————————————————————
after (?) this MRI scan, and you can see that the tumor is enhancing
She doesn’t know that
How will I tell her ?
Probably not, but she’s probably going to ask, and if the tumor grows like it’s, then you just saw in the scan, then how long does Hannah have left
—————————————————————— (9:06)
——————————————————————
Yeah
That would mean very
That’s pretty good
Ok
That’s good
That’s good enough
So any memory problems ?
Any speaking proc, speaking problems
No
No, not really
Ok
Spelling
Spelling, yes
Ever since surgery
So, what kind of problem ?
Like when you spell you miss letters ?
Yeah
Her spelling
Why, yeah
It’s just I’m jumbled
Ok
Yeah
—————————————————————— (9:28)
——————————————————————
Right
So uh were just getting ready now for Hannah to go in and have her PET scan and uh catheter Hickman line fitted and she’s just filling in the form
I’m not even going to ask her how she’s feeling or anything like that ’cause she’s feeling a little emotional
—————————————————————— (9:48)
——————————————————————
(?)
(laughing) You’ve just taken some , some Valium as well, have you ?
Not helping
This is like your biggest con, fear, isn’t it ?
I just show everyone what you’ve just done to my hand as well
—————————————————————— (10:04)
——————————————————————
What I’m doing is I’m creating a little tunnel under the skin
So I have to use just a little bit of pressure
So if I hurt you, you tell me
Ok ?
How are you feeling ?
Shhh
(laugh)
Well, you’ve done so well darling
I’m feeling really cold
Hungry ?
Yep
Alright
—————————————————————— (10:30)
——————————————————————
You look like you’re some sort of Holy Woman
People are going to come in here and bow to you
Did, did, did you feel that when it was going in and stuff ?
Not really
Little bit
It’s a little bit painful now ?
Yeah
It’s quite really painful now
Yeah
Well, it’s a massive tic, of something we have to get done
Yeah, I know
—————————————————————— Day Four (10:52)
——————————————————————
I’m feeling wrecked, absolutely wrecked
(laugh)
Well you had, bit of Valium yesterday
Yeah
And you had as much um local anesthetic
Yep
as he could give you he said, without knocking you out,
Yeah
but you were very, very brave yesterday, do you not think ?
I don’t think so
Why not ?
I wasn’t brave about the (canada ?) they put in here
—————————————————————— (11:23)
——————————————————————
Yes
What’d you think of
What, now what did you think of Judith Curran ?
Talk to
Oh, she’s great
( Skype on at the same time)
She’s like a mother
Yeah
Yeah
Is she ?
Yeah
(Yeah that’s fine. Whatever)
Yeah, she really does love you
( I’ve got something)
More than most
(?) all mom’s girlfriends
Mum uh Hannah just, I said, I just asked what she thought of you and she said she thought you’re like a mother
(Pete’s Mum)
Ohhh
I really do need you here
Oh dear
Well you have to have a partner mother at the moment
Yeah
But you need cuddles you mean ?
Yeah
Ohhh lots of cuddles
Oh no, no, no don’t
I asked
I’ll go
I need something dressed there
She needs help getting dressed
—————————————————————— (12:16)
——————————————————————
It’s, it’s, you know, it’s basically it’s uh, it’s a little roadway right into your bloodstream, so yeah, it has to stay very clean, and our thing is that we have to teach you
Yeah
how to do this
Yeah
—————————————————————— (12:32)
——————————————————————
You get 6 doses of antineoplaston a day,
Mhmm
they’re 4 hours apart
So, yeah, it’s almost 24 hours continuously
Mhmm
—————————————————————— (12:41)
——————————————————————
These are your bags
Ok. Thank you
and I’m going to wait until Dr. Barbera comes and talks to you about the pain medicine
Yeah
Then we will go ahead and hook up
Yes
because she did get the chest x-ray and everything’s a go
—————————————————————— (12:51)
——————————————————————
And everything goes in with a push and a twist
Ok
Quite simple
Alright
Yep
So obviously we’re gonna, when the fluid, we need to open up the clamp
Mhmm
And I always double, triple-check, make sure all the clamps are open
Yep
—————————————————————— (13:10)
——————————————————————
I’ve been on the treatment, I don’t know
It, it’s about
I don’t know
Half day ?
How are you feeling ?
It doesn’t hurt
Yeah
And this is what you’ve got to carry around with you
Yep
Now it’s like
It’s (?) my new bike
a baby
Something you have to have with you all of the time, and me with you all of the time
Oh (laugh) Oh god
I can cope with that
Ever since this all happened it seems like it’s just been one thing after another
Yeah
of obstacles
Yep
But we’ve got this far
Who woulda believed that we’d raise the money to get out here
Mhmm
which we have done, and now we’ve started on the treatment and I am pretty impressed with them there I must admit
Yeah
They’re really nice
—————————————————————— Day Five (13:52)
——————————————————————
Yeah
This is day, it’s day 4 yeah ?
Day 2 on the job
Day 5
Day 2 on the treatment
Mmmm I need a bit of a shave
um and um yep
You need a bit of a shave
So do I
Yeah, yeah, yeah, yeah, yeah
—————————————————————— (14:08)
——————————————————————
Hi
So, can I get ya
You need a pen ?
Uh, yes please
So pull this back ?
Pull it back to undo the lock
Ok, pump is off, so your next step is to disconnect it
So push in and twist, clockwise
—————————————————————— (14:26)
——————————————————————
How’s your new friend ?
Yeah, she’s good
Yeah ?
Mmm
What have we done today ?
We’ve learnt more lessons
I’ve learnt more lessons about changing the, changing the pump
How did I do ?
Honey you did well
You think so ?
considering
Considering what ? (laughing) How challenged I am
No, considering how hard it actually is
That you did well
—————————————————————— Day Ten (14:54) Meeting with Dr. Yi and Dr. Stanislaw Burzynski and
——————————————————————
Yeah, I think so far where we are we have been very impressed with all we’ve seen
Thank you very much
It looks like (?) we should not (?)
a pretty traumatic day because uh we met with Dr. Burzynskibut he didn’t give us the sort of news that we wanted uh because he’s concerned that the treatment may be enhancing uh and he wants us to stay here until at least um Hannah’s had one month on the treatment and to do MRI and see what’s going on
We can stay here
That’s the most important thing
Just imagine if we had to go home
You know ?
I know you’re tired of all this, you know, and its hard work, and it’s, you know ?
—————————————————————— Day Twelve (15:46)
——————————————————————
So the last time we kind of filmed was when we were with Dr. Burzynski and him saying do we want to stay and that
Yep
And how, how do you feel about that now ?
Yeah, i’ve got my head ’round it
Do you have faith in him and ?
Yeah, again I know that I’m in the best hands
—————————————————————— Pete’s colleague Dr. Hilary Jones appears on ‘Daybreak’ morning TV show in the UK (16:04)
——————————————————————
Are there question marks for you with regards to going over there to this particular clinic ?
I think what we have to bare in mind is that uh the treatment that, that Dr. Burzynski is offering is, is very uh experimental
It’s pioneering research, and pioneers in medicine tend to get a rough ride to begin with, and uh he hasn’t uh uh published the numbers of people in trials that convince the established authorities that his treatment uh works
It’s very interesting treatment
We’ve known about these peptides which can switch uh tumor genes on or off, and this is a different approach to these kind of tumors, that’s uh over and above oncology, chemotherapy, radiotherapy
Um, his results um, if you look at them um, sometimes appear extraordinary in some cases um but of course not in all cases
So it’s very difficult to evaluate, how effective it is
I I researched it pretty carefully myself because I have a friend there at the moment with his partner and the reports I’m getting back are they’re getting excellent treatment, excellent support, very impressed
This is somebody who, who knows a lot about medicine
Very impressed with what’s going on there
Um, we need to keep an open mind
Yes
Um it’s unfortunate it costs so much money but pioneering treatment does, and I really hope, that if you go that route that it works out for you
I really hope
Thank you
Indeed
—————————————————————— (17:20)
——————————————————————
So, that was uh, I didn’t know uh he was doing that, and actually the weird thing was that the day before I had actually contacted him just to say that we were doing really well
Yeah
But poor old Hilary was so caught up in that yesterday
On Twitter, I mean it was just nonstop
People just saying
“Burzynski’s a fraud”
Um, but we certainly don’t feel that he’s a fraud, do we ?
No
No
I get the impression that he’s 100% genuine
—————————————————————— 12/25/2011 – Christmas Day (17:50)
——————————————————————
Hello there
Hi. How are you today ?
We’re doing ok
Documenting that ?
Um yeah I’m documenting
(laughing)
everything
That’s against the rules
Really ? Oh dear
(? again)
Collecting evidence ?
Yeah, I am
We’re gonna sue
We’re gonna, we’re gonna sue a few people
(laughing)
That’s what you love to do in America, right ?
—————————————————————— (18:10)
——————————————————————
So same symptoms ?
Yeah
The flu symptoms
Mhmm
Yeah. Ok. How’s your breathing ?
The same
That was, really bad yesterday, wasn’t it ?
Yeah
Ok. Um, any headache ?
Yep
Ok. And you said you had, are they tremors or are they like shakes, like chills ?
Yeah, chills
Chills, ok
But, you know, like I couldn’t stop
Ok.
myself
It was just
Yeah
Ok. So it was un, uncontrollable ?
Yeah
Ok
—————————————————————— (18:41)
——————————————————————
This is how we spent Christmas Day, in the Burzynski Clinic
With the lovely Monica
Of course
And
How (?) would you have it any other way
And the Christmas songs
Hey (mouthing words to song)
—————————————————————— (19:04)
——————————————————————
We went to the clinic this morning, and she was shivering all night, fever
So she’s off the antineoplastons for the day, and she’s just basically in bed now, just absolutely exhausted, and now she’s got a little bit of swelling on the back of her head, which obviously is a ca, cause for concern when you’ve got a uh, a brain tumor
—————————————————————— Day Eighteen (19:04)
—————————————————————— Hannah was back on treatment yesterday, and last night her temperature went up to 102
So I phoned uh the clinic, and they said take her off the medication, the anti, antineoplastons
So I took her off
Her temperature came down
Then it went up again, and then we went back to the hospital today, back to the clinic, and they’re giving her a much smaller dose um and she’s on much smaller dose and she’s just come back, and she’s just exhausted
And she, I can see she’s just so close to breaking, which is cracking completely
(Christmas tree)
—————————————————————— (20:07)
——————————————————————
um and I’m just, got to the point where I can’t, I’m just, don’t know what to do
—————————————————————— Day Twenty (20:22)
——————————————————————
Well the last week has been very up and down
Um I have come off the dose
Gone back on it
Come
Come off it
back on
Yeah, and then come back off it again um, for several reasons: Fever, um shaking, chills, fever, and bacterial infection, um viral infection, every infection, um and then ended up with me having to go to E.R., the Emergency Room
Well at that point I was really fearing the worst
Mhmm
Because you’d a scan when we got out of here, right ?
Mhmm
and the scan definitely showed some tumor growth
Mhmm
um and I was thinking, what 2 and 1/2 weeks later from that
Yeah
That we were going back in the hospital
Mhmm
Because the tumor had gotten bigger
Yep
What has this whole experience like for you at the moment
Oh it’s just surreal
I just, I can’t explain it
It’s just surreal, to me
What, like its not happening to you ?
Yeah
You did actually said to me yesterday in the hospital, you said:
“I’m at my wits end”
“I don’t feel I can take anymore”
Yep
And what about today ? (laugh)
Well, I reckon I’ve been, I’ve just realized I’ve got to get on with it again
—————————————————————— Day Twenty-Two (21:53)
——————————————————————
So it’s, January the 1st, 2012, and we haven’t really got the,
We haven’t got off to a great start, have we ?
No
Why ?
Because I’ve had a fever
Uh you, when did you start, feeling feverish ?
In the middle of the night ?
Yeah. Yeah
And your temperature went up to 102
Yeah
What Dr. Burzynski thinks you, why you’re having a fever
you’ve either still got some flu-like symptoms or it could be the, the tumor actually breaking down
We’ve also got some problems with our pump this morning
(So what do you think ?)
Yeah, it’s not closing again
(And then you can also see the)
Uh, there it goes
(?)
But
It ain’t gonna stay that way
I don’t think it’s going to stay closed
Huh, what’d you think about that ?
(unintelligible)
(? get it fixed)
(and this looks like it’s ?)
(? fix ?)
Love you
—————————————————————— (23:09)
——————————————————————
The last time we saw you, you felt like you were completely drunk
Yeah
And you had double vision
Mhmm
So,then what, ended up, happening ?
Well, one of the nurses, kindly, pointed out
She said: “What have you taken ?”
That is where we recognized it was an anti-seizure drug, that I hadn’t taken before
And how do you feel now ?
I feel ok
I feel a but shaky
Yeah
I just have to (?) something to eat
Um, I’m just so tired
—————————————————————— (23:50)
——————————————————————
Hi, I’m Pete Cohen
Uh you might recognize me
Oh god
from morning television in the
Yeah
U.K.
Nobody recognizes you anymore
—————————————————————— (23:58)
——————————————————————
You should keep your fingers above the little
Ok
guard thing, yeah, and try to hold this
I’ve done it
as straight as you can
Ok. I’ve done it there Gary
and put some support
Yeah
on it
In there
and then you twist them down
Easier said than done (?)
I know
You can give it much more of a whack and you can u, use the other end as well
Ok
No, like this
(laughing)
Got no chance
Use the other end
(?) better
Ok. Thank you
(laughing)
You’re welcome
There you go
There you go (?)
There you go
—————————————————————— Day Thirty-Eight (24:33)
——————————————————————
I’ve never had to take care of anyone, the way I’m kind of having to take care of Hannah, and its just constant, and I get stressed around her, which isn’t fair, you know
She’s now got another temperature
She’s got a throat infection
Her temperatures up, uh and uh if it goes up over 102, it’s 101.8
If it goes up over 102 she’s got to come off of the treatment again um, oh, just, just feels like non-stop, you know
Cooking, and changing the bags
I’ve been into this, the clinic 3 times today
Taking her blood
Taking her back, get supplies
Take her back there
—————————————————————— (25:24)
——————————————————————
I’ve got a fever
It was over 102 last night
Yep. And
I’ve got antibiotics
Which you’ve been on for how many days ?
3 days
And we’re off the treatment
So, all in all
But you feel bad because you just want to be on the treatment, and just keep coming off
It’s just
How does that make you feel ?
Just, I don’t know, angry
Disappointed
Pointless
What you mean like
The while things pointless
Yeah
because you can’t stand
I just hope one day we can look back at this and laugh
Yeah
and just think: “We beat that”
because you couldn’t be doing anymore than what you’re doing
You know ?
You really couldn’t
Should really get a few of your friends to come over
Yeah
’cause you must be a bit bored of me
(laughing). No
C’mon, I’ve been really annoying
How grumpy was I yesterday ?
(laughing)
on a scale of 1 to 10 ?
(laughing)
I don’t know
C’mon
6
Really ?
Yeah
—————————————————————— Day Forty-Two (26:54)
——————————————————————
It’s 6 o’clock in the morning, and Hannah is lying here
Her temperature went up to the highest I’ve ever seen a temperature, on the thermometer
Where is the thermometer ?
Up to 104
I’m gonna just, I’m just trying to cool her down
I just phoned the doctor on-call and she said take some ibuprofen which Hannah has, and the result is ?
It’s come down a bit
Where is it ?
There it is
102.5
Well you’d think it’d come down
My god you’re so hot
I can’t believe how hot that is, thats got
Unbelievable
—————————————————————— (27:50)
—————————————————————— Hannah
Show me what’s going on
This all came up
When did you notice this ?
Yesterday afternoon, but its got worse since then
Yeah, lift up a bit higher if you can
Just zoom in on that
Yep
So it’s just one thing after another at the moment, isn’t it ?
Aye ?
Yes
Open your hands a little bit
Yeah (?)
And obviously we’re off, treatment at the moment
Mhmm
And we’re just waiting for who ?
Dr. Popper
What do you think he’s going to have to say ?
Mmm I don’t know
Ok
Ok, bye
—————————————————————— Day Forty-Four (28:35)
——————————————————————
Who um gave it a name ?
I sent a picture of it to Dr. B and he came back and said I think that’s what it is, and I looked into it and could see that that’s exactly what it is
Well does it bother you or does it just ?
No, it does
Like
Yeah
And itch ?
In some cases
Oh I’m sorry
Especially under the dressing
(?) Hannah had a fever 104 on Friday night
104 ?
103.9 I should, if I’m being absolutely, precise
So I think it’s brought this out
I think you can, you can say 104
—————————————————————— (28:50)
——————————————————————
So, we’re now going to have the MRI that we were going to have on Wednesday
We’re going to have it today
(laughing)
—————————————————————— 1/23/2012 MRI (29:29)
——————————————————————
This is one that was just done today ?
2012 Jan 23
Acq Tim: 12:13:09
955000
320 x 230
Today
2011 Dec 29
Acq Tim: 14:50:12
497500
256 x 192
Today
So the difference is that you can see there
How would you describe the differences between
and what you see here ?
Well 1st of all the size of the tumor is less, and um, if you see the actual, the solid enhancing part of the tumor
This is how it looks now
So from that you can see that it’s definitely, something definitely is going on
It’s changing
Yes
There’s no question about that
The size is less
The intensity of the enhancement is less
So wha, whe, whe, when you see something like this, wha, what does that show you ?
Well, certainly the, we see that the tumor’s most likely working, as the tumor is showing less enhancement, meaning less activity
Yeah
And the tumor’s by effect smaller
Yeah
So, ideally the next scan should be better
So we, we’re definitely going in the right direction
That’s, great
That’s for sure, and it’s brilliant that uh we’re going home on, on
On a high note
On a high note
Especially after our trials and tribulations
So
Certainly
—————————————————————— (30:47)
—————————————————————— Hannah’s tumor has started to shrink, and she doesn’t know
She doesn’t know that
So I’m going to go in the house
I think she’s still asleep, and give her the good news
(?)
Hannah
Can we go home ?
Can we go home ?
Guess what ?
We can go home ?
Yeah
Yea !
And guess what ?
Guess what
Your tumor started shrinking
Yea !
It shrunk by at least 10%
Let me just give you a kiss
Thank you
It’s ok
It’s ok
—————————————————————— (31:30)
——————————————————————
Hi Daddy
Hello, how are you ?
Yeah, I’m sorry for ringing so late
That’s alright
Um but I’m ringing with really, really good news
Good, that’s what I wanna hear
Go on you tell
No, you tell him
I don’t think I can
(Go on ?)
(? tell me ?)
Um
C’mon
my tumor
Yeah
has already shrunk by 10%
You’re f’n ‘ell man
F’
(?)
That is absolute, amazing
And considering I haven’t been on the treatment for
You’ve been on the dose, off the dose, and on it
F’n ‘ell
What
When you get started on the
F’n ‘ell man
(laughing)
I’m glad you phoned me
Yeah, you’re the 1st person I called, obviously
—————————————————————— (32:22)
——————————————————————
So what can you believe we’ve now been here for one month
Yes
And we’re going now
What are we going in to have done ?
Hopefully, be discharged
And are you pleased with the progress you’ve made ?
Yeah
It’s been up and down
Yeah it’s been up and down
(Trip, trip ?)
You look like a Hollywood star
(laughing)
Not many Hollywood stars have a backpack like this though
Yeah but it was also a week ago
I don’t know how long ago that was where you couldn’t even
What ?
What ?
In you go
In I go
Hi
We can’t stay away
(laugh)
We’re getting discharged now
Oh really ?
I think so
Well that’s wonderful
Yeah
Well yeah, oh we, we don’t wanna go
Right turn mate
Which floor ?
2nd floor
Oh, you’re still filming
Yeah, I just, you know, I mean, you know, why not ?
I haven’t filmed all of this
We’re going up
This was great when I was feeling really sick, ’cause it
Seems like we’ve spent a lifetime together, we used to go to the 4th floor
(laugh)
(Ok)
Hi
Ohhh
Hello
Hello
Hi
Hi
Hi everyone
Hello
Hello
Um Hannah and I are leaving on Friday
What’s going to be your overriding memory of us ?
No
What are we gonna do ?
Hey
Are you going to miss us ?
What are we gonna do ?
Of course
Peace and love
(Remind me, is Hannah ?)
Why don’t you stay
(?) who’s your favorite, because you remember we said we were gonna say
(laughing)
‘Cause, ’cause we can o, we can only take one of ’em home, and who’s it gonna be ?
(? the rash (?) dude)
(laughing)
Well you can only take one attribute from each person, what would it be ?
I’m going to take Ashley home
(laughing)
Really ? Why ?
Yes, I like that
Because she’s, because she has the same condition ?
Yep
(laughing)
Because she can look after
Very good
(laughing)
So Rick you were told I was a big shot
Yes, going to film everything so
(Who knows ?)
you have to watch out
So, c’mon, what, what point in your head did you think: “My god this guy’s an absolute idiot”
(laughing)
—————————————————————— Day Forty-Seven (34:55)
——————————————————————
This, this December 29
This is January 27
Here we have the tumor, visible previously
And we have now
Certainly, outside diameters have decreased
Mhmm
So to some extent, but also the, the intensity of the enhancement, has decreased
Mhmm
As you can see this was much brighter before, now is less
Which means that the tumor is decreasing and it’s uh losing its activity at the same time
Mhmm
Which is a good news
But, again, we are not at the remission
This is called Stable Disease
Stabilization
Mhmm
Probably next time we see this is shrinking more and this wide band is getting thinner, and thinner, and finally
Mhmm
it should disappear
So that’s what you should be looking for
Ok
—————————————————————— (35:43)
——————————————————————
There’s some hair on the camera
Well it’s not mine
It’s definitely not mine
Hmmm
Um
No
I’m gonna start
Ok
(laughing)
Go on then
Ok
So it’s June 2012, and we have been back for approximately 6 months from the, America, and generally it’s all going well
I’ve had about 3 scans since I have been back, and they’ve all looked fairly positive
I think they’ve looked more than positive but yeah, go on
Carry on
(laughing)
Um, yeah, so the tumor, well the enhancing part of the tumor is getting smaller
Basically there’s such a small little part left that I’m sure when you watch this you’ll be able to see some images so people can see your scans
December 7th 2011 scan
Yeah, mhmm
March 21st 2012 scan
and we know that if Hannah hadn’t had this treatment, with the type of tumor that she had
May 2nd 2012 scan
she might already be dead, or she probably wouldn’t be here
June 13th 2011 scan
Yeah
much longer
July 29 2012 scan
She is very much alive at this point in time
Yeah
And what’d you think about all this controversy, because the controversy around what we’re doing, and it’s just, just
I can’t believe it personally
I find it very, very hard the, the hatred and the skepticism, of, um, what Hannah’s doing
What, what, what’s that like for you ?
Well, as I, as I’ve always said along the way, you know, any of the skeptics, what would they do, if they were in my position ?
Would they want to die in 3 to 5 years or ?
Probably less than that
Uh (both)
And that’s a horrible thought
Um
Yeah, uh everyone has a, has a right to be sceptic and everyone has a right to their own opinion
Yeah, they do
Um, and, but the funny thing about people’s opinions is, opinions are often based on, what they’ve heard
Yeah
or what someone hasn’t done, whereas uh, we spent 7 weeks at the Burzynski Clinic uh
And we saw everything
We saw everything
We spent time with this man um, and I tell you from my, from, from, I think from both, I can maybe speak for you hey ?, but uh
(laughing)
he’s one of the most honest, kindest people
Yeah, he is
‘Cause I, I said to you, the other day, about making this film, and you said: “Even if I was going to die tomorrow, I would still want this to be made”
Yeah
You remember saying that ?
Yeah
What, what, why did you say that ?
Why ?
Because, it might give other people a shake up
Mhmm
Yeah
Yeah, because uh, yeah
Why did we make this ?
Well I made this because I thought it was a journey that was well worth documenting
(?)
and maybe could help other people, and maybe help people realize there are other options, apart from the conventional treatment for cancer, and to inspire people
I hope you’re inspired by Hannah’s story because she’s an amazing, she’s a, honestly she’s annoying sometimes
(laugh)
but not very often
So are you. Yep
She has such a desire to live, uh and to enjoy her life, and I think
I don’t know, if there’s anything else that we
Ok, that’s enough for now
Hannah’s most recent scan confirmed she has now had a complete response to the treatment
—————————————————————— (39:35)
—————————————————————— Special thanks to
Bacon, Lesley
Bradley, Jeremy and Irene
Cank, Elizabeth
Cohen, Judith and David
Gooden, Lindley
Jones, Dr. Hilary
Levitt, Chris and Gina
Martinez, Dr. Juan
Merola, Eric
Newman, Ofir
Norouzi, Minou
Ramsey, Anna
Rowkowski, Dr. Bob
White, Gemma
Hannah Bradley’s GP The Eagle radio station
—————————————————————— (39:40)
—————————————————————— Dr. Stanislaw Burzynski
and all the staff at the Burzynski Clinic
—————————————————————— (39:48)
—————————————————————— camera Pete Cohen
additional camera Lindley Gooden
editor Jamie Lowe
—————————————————————— (39:54)
—————————————————————— A film by Jamie Lowe & Pete Cohen
—————————————————————— (40:00)
——————————————————————
This film is dedicated to all the people who donated their time and energy to raise funds to save Hannah’s life
—————————————————————— (40:08)
——————————————————————
To follow the progress of Hannah’s recovery and find out more about the treatment she received please visit: http://www.teamhannah.com/blog
====================================== [15] – 2/17/2012 – Friday – REAL LIFE – ‘I’ll try anything to beat brain cancer’
—————————————————————— http://m.gulfnews.com/i-ll-try-anything-to-beat-brain-cancer-1.981203
====================================== Team Hannah Blog (2:46) 4/1/2013 – Posted by Hannah
======================================
(laughing) Don’t
‘Cause you’ll put this bit in
Promise ?
Yeah
Ok
(laugh) Ok, so, it’s April the 1st and it’s 2 years on since I had my operation and but ? obviously is out
So, I just wanted to (laugh)
Start again
Start again
Start again
Start again
Ok
Ok
I don’t believe you
I have
Start today again
(laugh) I don’t believe you
It didn’t go “beep beep”
Because it’s on silent
(laugh) Do you think that I’m an idiot ?
No
(laugh)
Ok
3 2 1 go
Hi there um it’s (laugh) the, the 1st of April and it’s 2 years on since I had my operation and I’m pleased to tell you that I’m obviously still here, and um that’s thanks to you guys and thanks to me I suppose from, for fighting so hard for my life
And what, and what have you been up to then ?
I have been up to um just resting a lot and uh making up new recipes uh
Your next book
Yeah, for my next book and
Yeah, that’s pretty much it
And when are you thinking you might be able to come off the treatment ?
June
End of May
June
I have a scan in a couple of weeks and we’ll update you after that
And what will that be like, coming off the treatment ?
Oh, it’ll be amazing
Yeah, amazing
So you won’t be walking around with
No
this fellow here ?
No
Ok
Is there anything else you’d like to say ?
Um, just love to you all
Oh
The wave
—————————————————————— Team Hannah Blog (3:34) 3/2/2013 – Posted by Hannah
======================================
Hi
This is the Team Hannah blog and it is the 3rd of March and Peter is actually filming me today
He’s not there, where he normally is
Yeah
Exactly
So I’m on my own
Flying solo
Um I’d just like to say how well I’m doing and my last
Ohhh went a bit northern then
My last scan um was mid-February and it showed no enhancing tumor
So that’s really good
Um I’ve just got um a really cystic area in my head
So it looks like they’ve predicted June me me to be off the treatment
So, fingers crossed for June
What will that be like to, to come off the treatment ?
Um, yeah, it will be
The treatment is so uh, restricting I would say
Yeah, it would be good to come off
And what else have you been up to ?
I have been (holding up Team Hannah Cookbook) selling lots of copies,
Yeah
and, and,
the other book a little bit
I know that you mentioned in the last blog, but just
What, what’s the book about ?
Well it’s low-carb recipes and I’ve
Been on the radio
I did a radio
promoting it and um it’s great for anyone who wants to cut out sugar
to lose weight and decrease their, and what, decrease their
Risk
Yeah, risk of getting disease
Yeah, ’cause we saw a doctor in America, Dr. Rowkowski
and he, and one of the things he said to you was you really need to cut sugar out of your diet
to
sugar is what he said
Yeah
Um, and you’ve been getting a lot of people that
trying your recipes and taking photos
Yeah
picking up
on Facebook on Pete’s favorite page
to cook something from the book
put them up on the
page as well
And um where can people find out about your book
Um just slide over to, to Hannah Cookbook and you will find it there
And your blog as well, yeah ?
Yeah
So, I think we’re done
I just want to say there’s an airplane going overhead
Thank you to everyone whose supported us
it seems a lot of, a lot of film
And why are you laughing
Pajamas
pajamas
I didn’t quite
yep
What are those
(laughing)
This bench has seen a lot of action
Yeah, it has
Video action, that is
(laughing)
And we’re very thankful to everyone
Yeah
Thank you, yeah, again
Yeah
We try and do one after next scan
Big wave, please
Bye bye
Bye
====================================== Sapphire Sings For Team Hannah
1/3/2012 – Posted (3:00)
====================================== (Last) Christmas, I gave you my heart
The very next day, you gave it away
This year, to save me from tears
I’ll give it to someone special
Once bitten, and twice shy
I keep my distance, but you catch my eye
Tell me baby, do you recognize me ?
Well, it’s been a year, it does not surprise me
Happy Christmas, I wrapped it up and sent it
With a note saying, “I love you”, I meant it
Now I know, what a fool I’ve been
But if you kiss me now, I know you’d fool me again
Last Christmas, I gave you my heart
The very next day, you
—————————————————————— (1:04)
——————————————————————
Ok Sapphire, all I have to say is “Thank you, thank you, thank you
You have compiled a CD, um, in aid of Help for Hannah, and you have had quite a lot of sales so far, and you have got a beautiful voice, and I’m sure you’ll go very, very, very far, but “Thank you”, and this is just a little “Thank you” for you, but obviously other people are going to hear it Thank you Love you
Bye
Did you
Sorry
Did she also, sing this yesterday, uh, somewhere?
Yeah, she sung it at Aldershot uh Football Club
Again, so Aldershot was playing football against another team
Plymouth, yeah
Plymouth
And she sang it for everyone ?
Yeah
And they raised some money for you ?
Yep
Yes, so this has been a big “Thank you” from both of us (laughing)
Let’s, let’s play out a bit more of that song
Ok
‘Cause we love this song
It’s off
Uh yep, it’s my favorite Christmas song
It’s the only Christmas song
(gave it away)
we can hear when it’s not Christmas This year, to save me from tears
I’ll give it to someone special
A crowded room, friends with tired eyes
I’m hiding from you, and your soul of ice
My god I thought you were someone to rely on
Me ? I guess I was a shoulder to cry on
A face on a lover with a fire in his heart
A man undercover but you tore me apart
Now I’ve found a real
Thank you so much
——————————————————————
An Update For You
10/21/2011 – Posted
A Message From Pete About Team Hannah (3:07)
A MESSAGE FROM PETE
Hi it’s Pete Cohen and I just wanted to share something with you
Uh in February this year my girlfriend was diagnosed with a, with a brain tumor and when this happened it really obviously rocked our world
You know, everything seemed to be ok
Everything was great in life
And then something happened, and everything changed
And I don’t know whether anything like that has ever happened to you
But these things happen don’t they
And when they happen they really test you
They really challenge you
They, it’s very easy
It made me question lots of things
It made me think to myself, well, you know, what, is life, really fair ?
You know, should this happen to such a young person ?
These things do happen
And it really puts us in a position where it questions what we have
What we have to deal with such difficult circumstances
And I’ve definitely found things in myself that I didn’t know wa was there, you know, resolve, compassion, determination just to, to keep going
And this is the thing human beings we all have this kind of, we all have something else don’t we
All, we all have something more than our stress, and our worry, and our anxiety
We have a our true nature I think can overcome so much, of what life throws at us
You know, obviously we can’t overcome, everything
But what I really wanted to share with you is something that I’ve been so taken aback with, and that’s the beautiful nature of human beings, because we’re trying to take my girlfriend over to America to be treated over there, and we’re having to raise a considerable sum of money, and we’ve actually had to ask people, for help
Now that’s something that’s a bit alien to me, is to ask people and say, you know, can you help me, can you help us
Maybe that’s an insecurity that I have
Bur we’ve asked for help and it’s been amazing to see people all over the world spread the world, donate some money
And I’ve been so touched by that
It’s so life affirming
It so, it gives us such great strength
Any my girlfriend and I have been
so touched by that
So what’s my point here ?
Recognize how important it is for all of us to support each other
Recognize how important it is to affirm each other
You know, that’s one of the most important human needs we all have;
affirmation, it’s the fact that, to take the time to recognize each other
Hello
How are you
I care for you
So, thank you so much for watching this, and if you want to help us out please just uh visit the web-site we’ve put together for Hannah
It’s just called Team Hannah . com, and on there you can see a little more about Hannah and what’s happened to her, and the treatment we’re looking for her to have, in America
So, I hope you all have a great day and please, take the time to be there for other people, to care for other people, because that’s what makes this world great
Thanks for watching
Bye, bye
======================================
v=p5tAeYsNOZQ?rel=0
======================================
——————————————————————
Hannah’s message [3]
——————————————————————
(3:02)
——————————————————————
Ok
So what’s your name ?
I’m Hannah Bradley, and I’m 27 years old, and I come from North Hampton
And what happened to you ?
I had a seizure in middle of the night and my partner tells me I was rushed to hospital
That was in February 2011
And from there I had lots and lots of tests, and they decided that I had a brain tumor, and they were going to operate, and they successfully operated on the 1st of April, 2011, and they, the biopsy went off to be um checked
I found out that I had a grade 3 tumor
I then, under, underwent a, I had a 6 week course of radiotherapy, and that left me with no hair, and can’t remember what else (laugh)
And um that I went under another MRI scan 6 weeks after radiotherapy and we, that again wasn’t particularly good news, and we found out that there was still remnants of the tumor, and the future for me is very uncertain
So what, what are you looking for ?
What are you looking to do ?
Um, I, sorry
What do you want Hannah ?
What is it you’re looking for ?
Um, mainly I, um, I can’t
You just want to live, right ?
Yeah
So what are you asking for ?
What, what, what do you need ?
I um, I need people to raise money, for, uh, my treatment
I’m looking to going to America because there are things that they can offer me here on the NHS or locally (?) is very, very limited, and there’s a doctor in Houston, and he’s able to help
So you want some help in raising some money, yeah ?
Yeah, it’s completely out of our reach to raise that much money, and it’s, I’d like help to raise the money
——————————————————————
9/17/2012
Monday, 17 September 2012 07:23 | Written by Administrator
Hannah Bradley
Hannah’s amazing story, fighting and winning over her Brain tumor (Anaplastic Astrocytoma) is available on her support site
Team Hannah
There are more videos by Pete and Hannah, documenting her fight and the Burzynski Clinic
======================================
Bob thinks we can debate all this in an hour 🙂
======================================
3/4/2013 – 7:58pm – You posted on Colorado Public Television (CPT12):
“ANP is toxic as anything!”
So you’re saying what ?
ANP is as toxic as water ?
[1]
——————————————————————
“It gives people insanely high sodium, and Burzynski is currently not allowed to be dispensed by Burzynski because, according to a patient, it killed someone”
FAIL – provides no citation(s), reference(s), or link(s) to support “toxic” and “tons of chemo” statements
[1]
——————————————————————
“This is not harmless stuff”
“This is not non-toxic”
FAIL – provides no citation(s), reference(s), or link(s) to support “toxic” and “tons of chemo” statements
[1]
——————————————————————
“And most of Burzynski’s patients never qualify for his trials”
“That’s the lure”
“They all end up taking tons of chemo used off label”
FAIL – provides no citation(s), reference(s), or link(s) to support “toxic” and “tons of chemo” statements
“Tons of chemo” ?
Even your “man-crush” cancer oncologist has blogged that it’s “low-dose” chemo
Don’t they have the intelligence a “Professor of Writing” should have ?
[3]
——————————————————————
3/12/2013 – Why did “The Skeptics™” on CPT12 and elsewhere whine about publication when the Declaration of Helsinki
30. addresses publishing human clinical trial data
does NOT indicate WHEN the data should be published, leaving it open to interpretation as to if it should be done piecemeal, or when all trials re a specific drug or drugs are completed after Phase I, II, or III, for example ?
[3]
——————————————————————
Why did “The Skeptics™” on CPT12 and elsewhere rant about scientific peer-reviewed journals and their “Impact Factors” but did NOT know what to do about this ?:
National Cancer Institute
at the National Institutes of Health
Cancer Clinical Trials
15. “The results of clinical trials are OFTEN published in peer-reviewed scientific journals”
[4]
——————————————————————
Blaskiewicz, do you have this many honors / awards ?
20 – HONORS AND AWARDS
LIFETIME ACHIEVEMENT AWARD. March 2012. Dallas /Ft. Worth, TX
The Order of Merit of the President of Poland – Officer’s Cross, October, 2004
Decoration of Polish Medical Association, November, 2001
The Order of Saint Brigida – Grand Cross with Star, November, 2001
The Order of Saint Stanislas – Grand Cross with Star, November, 2000
The Order of Reconciliation – Noember, 2000
The Cross Virtus Nobilitat, June, 1999
The Wisdom Award of Honor, December, 1998
The Medal of the President of City of Lublin, Poland, December, 1998
The Order of Saint Stanislas- Commander’s Cross with Star, December, 1997
The Lady Liberty Award “for engaging in invigorating the Right to be Secure in their Effects by fourteen years of perseverance in practicing his Profession free of interference by a government having no probable cause and in the determined resistance to that interference,” Libertarian Party of Texas, Dallas, TX, July, 1997
The Gold Medal from the American Institute of Polish Culture for outstanding achievements in the field of medicine and discovery of anti-cancer drugs antineoplastons, Miami, FL, February, 1997
The Medal “Heart for Hearts” for saving human lives, Lublin, Poland, August, 1997
The Memorial Medal of Zamoyski’s Lyceum in appreciation of outstanding contribution to increase scientific ranking of the school, Lublin, Poland, November, 1997
The Heritage Award by Polish American Congress in recognition of extraordinary achievement in the research, treatment, and prevention of cancer, Chicago, IL, October, 1993
Special Medal from the Polish government’s Institute for Drug Research and Control for achievement in the field of cancer research, Bialvstok, Poland, September, 1989
Honorable Membership in the Academia del Medeterraneo, Rome, Italy, 1984
Recipient of commendation for Dedicated Service and for Personal Contribution made in the
Advancement of Medical Education, Research and Health Care, Baylor College of Medicine, Houston, TX, April, 1977
Recipient of Medical Doctor Diploma with Distinction, Medical Academy, Lublin, Poland, 1967
Co-winner of the prize for best paper presented at the 7th Conference of Polish Medical Student Research
Societies, Poanan, Poland, 1966
[5]
—————————————————————— Why do some Burzynski critics claim they are NOT a “group” when they comment on each others blogs?
“That’s why I like the idea of the campaign that Bob Baskiewicz has come up with to wish Dr. Burzynski a happy birthday this year, skeptic style:”
2/15/2012 – the U.S. Department of Health and Human Services has awarded St. Jude Children’s Research Hospital $4,314,800 for a childhood cancer survivor study
Phenylacetylglutaminate (PG) and Phenylacetate (PN) are metabolites of PHENYLBUTYRATE (PB) and are constituents of antineoplaston AS2-1
SODIUM PHENYLBUTYRATE was given an orphan drug designation by the FDA for use as an adjunct to surgery,
radiation therapy, and
chemotherapy
for treatment of individuals with
primary or recurrent malignant glioma
6 months median duration of treatment
of all 12 patients
2 years / 33.3% – Survival
2 / 17% – alive and tumour free for over 5 years since initial diagnosis
from the start of treatment
5 years – 1 alive for more than
4 years – 1 alive for more than
Only mild and moderate toxicities were observed, which included
3 cases of skin allergy
2 cases of:
anaemia
fever
hypernatraemuia
single cases of:
agranulocytosis
hypoglycaemia
numbness
tiredness
myalgia
vomiting
incurable recurrent and progressive multicentric glioma
antineoplaston A10 and AS2-1 (ANP)
9 – patients’ median age
6 patients were diagnosed with pilocytic astrocytoma
4 with low-grade astrocytoma
1 with astrocytoma grade 2
1 case of visual pathway glioma, a biopsy was not performed due to a dangerous location
16 months – The average duration of intravenous ANP therapy
19 months – The average duration of oral ANP
1 patient was non-evaluable due to only 4 weeks of ANP and lack of follow-up scans
1 patient who had stable disease discontinued ANP against medical advice and died 4.5 years later
10 patients are alive and well from 2 to >14 years post-diagnosis
Only 1 case of serious toxicity of reversible tinnitus, of 1 day’s duration, was described
2004 – Protocol – incurable recurrent and progressive multicentric glioma
12 – Patients Accrued
33% – % of Patients Showing Complete Response
25% – % of Patients Showing Partial Response
33% – % of Patients Showing Stable Disease
0 / 0% – # and % of Patients Showing Progressive Disease
2005 – Phase II – Long-term survival of high-risk pediatric patients with primitive neuroectodermal tumors treated with antineoplastons A10 and AS2-1 http://www.ncbi.nlm.nih.gov/m/pubmed/15911929
Integr Cancer Ther. 2005 Jun;4(2):168-77
13 children with recurrent disease or high risk
6 (46%) survived more than 5 years
2005 – Protocol – recurrent disease or high risk
23% – % of Patients Showing Complete Response
8% – % of Patients Showing Partial Response
31% – % of Patients Showing Stable Disease
38% – % of Patients Showing Progressive Disease
2006 – Phase II – Targeted therapy with antineoplastons A10 and AS2-1 of high-grade, recurrent, and progressive brainstem glioma http://www.ncbi.nlm.nih.gov/m/pubmed/16484713
Integr Cancer Ther. 2006 Mar;5(1):40-7
Brainstem glioma carries the worst prognosis of all malignancies of the brain
Most patients with brainstem glioma fail standard radiation therapy and chemotherapy and do not survive longer than 2 years
Treatment is even more challenging when an inoperable tumor is of high-grade pathology (HBSG)
patients with inoperable tumor of high-grade pathology (HBSG) treated with antineoplastons in 4 phase 2 trials
39% – overall survival at 2 years
22% – overall survival at 5 years
17+ years maximum survival for a patient with anaplastic astrocytoma
5+ years for a patient with glioblastoma
39% – Progression-free survival at 6 months
5+ year survival in recurrent diffuse intrinsic glioblastomas and anaplastic astrocytomas of the brainstem in a small group of patients
18 – evaluable
4 – glioblastomas
14 – anaplastic HBSG
14 – diffuse intrinsic tumors
12 – recurrence
6 – did not have radiation therapy or chemotherapy
Antineoplastons, A10 (A10I) and AS2-1 injections
5 months median duration
Responses were assessed by gadolinium-enhanced magnetic resonance imaging and positron emission tomography
Antineoplastons tolerated very well
1 case of grade 4 toxicity (reversible anemia)
2006 – Protocol – high-grade pathology (HBSG)
18 – Evaluable Patients
11% – % of Patients Showing Complete Response
11% – % of Patients Showing Partial Response
39% – % of Patients Showing Stable Disease
39% – % of Patients Showing Progressive Disease
Or did you expect Burzynski to publish the final clinical trial results before they were finished, Bob?
“Response to the release of Burzynski 2, Havanna Nights” http://t.co/t9WMpNRN9L
Skeptical Humanities
Learning is Cool
Response to the release of Burzynski 2, Havanna Nights
Posted by Bob
On this week’s episode of the Virtual Skeptics, I replied to what was learned at the premiere of the new Burzynski movie
The text of my segment follows the episode
This week, the new Burzynski movie premiered in San Luis Obispo, California
We largely knew what was going to be in the movie since a couple of trailers had been released, the patients who appeared had talked about the filming, and there was a sort of credulous review had appeared a few days ahead of time and I believe the director may have mentioned it on a PBS fundraising specual a few days earlier
So we had a pretty good idea of what our proxies should be looking for
We really wanted to see if certain people who had been filmed, like Amelia Saunders or Hannah Bradley appeared and especially what was said about them
We wanted lists of people who appeared, to see if we might be able to put together who said what
Most of these people’s stories are well known, and we doubted there would be anything new
Also our people took down key quotes that struck them as important, like
(those notes did NOT seem very “key” considering Orac’s (David H. Gorski @gorskon #sciencebasedmedicine @ScienceBasedMed @oracknows)
“Second-Hand” “review” of Burzynski: Cancer is Serious Business, Part II)
“skeptics are hiding behind their BS free speech.”
(Yep, TRUE)
[7]
——————————————————————
This is my takeaway, after talking to the people who I know were there
We are wiggly little scumbags who are hateful and slimy
(some skeptics seem to be “hateful” of the truth)
[7]
——————————————————————
We ridicule the desperate and dying
Some of us are paid by big pharma
Others are deluded and think that we are doing good but are being misled
(that is a fair description of “misinformation,” “disinformation,” and “misdirection”)
[7]
——————————————————————
But make no mistake–and this was hammered home to me by everyone I talked to–we are to them pure evil
One of my big concerns going into the movie was how I was going to be portrayed and whether or not I was going to receive death threats
That my family was going to receive death threats or that I was going to be harassed at work
I feared this because of a letter that, as you know, was sent to my employer promising that I would be featuring prominently in the Burzynski movie
[7]
——————————————————————
Nobody asked me for my opinion or to give a statement or to respond or clarify; they went straight to my boss
Maybe they figured out your “opinion” and didn’t need any “clarification”
[7]
——————————————————————
Fine
I’ve had wacky people contact my employers in the past
I fully expect it to happen in the future
Clips of this show, episode 13, were included in the movie
This is the episode that was quoted in the letter on my university chancellor
As it turned out, our faces were blurred, our names obscured, and our voices were altered
No real identifying information
Which, you know, I’m OK with
However, there are some problems here
1) What was served by contacting my employer other than to scare me
How dare the filmmakers say that we’re terrorizing people when they are doing just that
Filmmakers ?
[7]
——————————————————————
2) Someone asked me about a quote,
“we’re coming for you, you little polish sausage you.”
The thing is, the quote is patently absurd if my name is shown, something that everyone here jumped on, like I hoped you would during the original episode
That joking was not conveyed to the skeptics in the theater audience
This might be due to the fact that not only were we given scary voices but also that apparently every time we appeared scary music played in the background
That might be funny to you but maybe not to your Human Resources Department, and if that was “scary voices” and “scary music” to you, what’s the last scary movie you saw?
Scooby Doo, Where are You?
[7]
——————————————————————
It’s clear that the reason I’m in the movie in the capacity I am, as chief bad guy, is because I’m on video talking about the Burzynski Clinic
Are you sure it’s not because you are somewhere behind Gorski with the disinformation?
After all, he was invited to appear in the movie
Were you ?
[7]
——————————————————————
And this leads me to another thing that Brian mentioned
That when we kind of appeared on the screen, they put up a title card type thing that said,
“skeptical teleconference”
or something like that, and that a woman at the end of the show, wanted to know,
“How did you get this footage of these scheming skeptics?”
Um….we publicize our show constantly?
If you can’t have real clandestine drama, you might as well make it up
My favorite bit was a tweet that I got around this time where a new account who followed like 10 people I do said,
“It’s really interesting when you talk about Burzynski on the show
Could you do that more?”
Really, Eric?
(Do you know it was Eric ?
After all, you thought I was Eric)
Bob Blaskiewicz
[7]
——————————————————————
Yeah, I have a feeling it’s Merola
Do you think I’m two years old? (Your “fact-checking” ability makes me wonder)
[7]
——————————————————————
I am interested in ultimately seeing it
I’m asking that the producer send a review copy to the James Randi Educational Foundation so a proper review can be done
(As if jref is a “reliable source”)
[7]
——————————————————————
Or you could screen it in Minneapolis
Next week works for me, Eric, if you’re free
I guess he wasn’t
[7]
——————————————————————
Another thing
News broke on the 7th of January in skeptical circles that the FDA was conducting an audit of the clinic
A patient in the movie apparently said that she had been receiving a brain scan when she heard that the Clinic was being investigated again
This means that material was added to the movie after the 7th of January
The Burzynski Birthday Fundraiser was announced by PZ Myers on the 6th
So there was more than enough time for the filmmaker to clarify exactly what was meant in that episode when I said that there was going to be a little present on his birthday
(That “present” PZ Myers was offering up ?)
[7]
——————————————————————
Skeptics evilly, and with malice aforethought, raised $14.5K dollars for St. Jude’s
We then challenged the Clinic to match us, and it didn’t
That the director did not mention this fact seems to me inexcusable, making us look like we are big meanos who hate babies and morality
(He could have mentioned your “Fave,” PZ Myers)
[7]
——————————————————————
This demonization is unfair and at the expense of the truth–if you ever read theotherburzynskipatientgroup blog you know whose side I’m on
P Z who ?
[7]
——————————————————————
If he used the video clip of us that he cited in his letter to my employer, about us bringing a “present” to Burzynski and knowing what it actually was without clarifying it, well, that just speaks to his regard for completeness and accuracy
I don’t think you really wanted P Z’s “present” “clarified”
[7]
——————————————————————
No messiah should need such fudging
It suggests to me that he’s forcing evidence into a pre-existing narrative of persecution
https://twitter.com/jref/status/312255856928509953 Bobby, did you know that I tried to post a comment on the James Randi Educational Funding (jref) article Written by Brian Thompson, about this, but they did NOT post my response ?
You are so busy tweeting about penises that you do NOT have enough time to “Fact-Check” ?
[7]
—————————————————————— You do know FDA required ?
” … in 1997, his medical practice was expanded to include traditional cancer treatment options such as
chemotherapy,
gene targeted therapy,
immunotherapy and
hormonal therapy
in response to FDA requirements that cancer patients utilize more traditional cancer treatment options in order to be eligible to participate in the Company’s
Antineoplaston CLINICAL TRIALS http://www.sec.gov/Archives/edgar/data/724445/000091205702038660/a2091272z10qsb.txt
[8]
——————————————————————
“That said, however, I do disagree with some of his conclusions”
(You could see that coming a mile away, couldn’t you?)
Getler starts off:
[ ” … It is about the decades-long struggle of a Polish-born physician and biochemist, Stanislaw Burzynski, who set up a clinic in Texas in 1976, to achieve acceptance for a cancer-cure therapy based on a treatment he developed based on what he calls “Antineoplastons.” [ANP]”
“I submit this is already wrong
There is little evidence that Burzynski is at all serious about developing antineoplastons for wider marketing”
THAT certainly explains the Phase III stuff
[8]
——————————————————————
“If that were true, surely he would have managed to have completed and published a single advanced trial in 35 years
Bob, who was ultimately in charge of the trials?
The FDA ?
[8]
——————————————————————
“If you look at the trials he’s been required to register at clinicaltrials.gov, you see over 60 trials, 1 completed, and none published
NONE”
Bobby, where is the
Citation(s),
Reference(s), and / or
Link(s)
that support your
“required to register”
statement ?
NONE ?
Are you a sociopath who thinks that people should believe you just because you blogged or twitted it ?
[8]
——————————————————————
“This is important because he is restricted to giving his ANP in clinical trials
But he apparently abandons his trials, almost all of them
This is not normal”
Bobby, how many is
“almost all of them” ?
[8]
——————————————————————
“He charges patients out the nose to participate in the clinical trials
This is not normal”
Does it cost as much as any of THESE ?
Cost cancer: The hospital wanted a $30,000 deposit http://articles.cnn.com/2009-06-16/politics/health.care.hearing_1_health-insurance-post-claims-underwriting-individual-health?_s=PM:POLITICS 2008 – Cost cancer insurance: Avastin, made by Genentech, is a wonder drug. Approved for patients with advanced lung, colon or breast cancer, it cuts off tumors’ blood supply, an idea that has tantalized science for decades. And despite its price, which can reach $100,000 a year, Avastin has become one of the most popular cancer drugs in the world, with sales last year of about $3.5 billion, $2.3 billion of that in the United States. Avastin costs $50,000 a year and adds four months of life. “There is a shocking disparity between value and price,” he said, “and it’s not sustainable.” http://www.nytimes.com/2008/07/06/health/06avastin.html?_r=0 Cost cancer chemo up-front: $45,000 to Come In http://online.wsj.com/public/article/SB120934207044648511.html?mod=2_1566_topbox#articleTabs%3Darticle 3/2012 – Total Cost of Cancer Care by Site of Service: Physician Office vs Outpatient Hospital (22 pages) http://www.avalerehealth.net/news/2012-04-03_COA/Cost_of_Care.pdf CHEMOTHERAPY:
9/24/2012 – The newspapers found hospitals are routinely marking up prices on cancer drugs by two to 10 times over cost. Some markups are far higher. • Levine Cancer Institute, owned by Charlotte-based Carolinas HealthCare, this year collected nearly $4,500 for a 240-milligram dose of irinotecan, a drug used to treat people with colon or rectal cancer. The average sales price for that amount of the drug: less than $60.
• Carolinas Medical Center-NorthEast in Concord was paid about $19,000 for a one-gram dose of rituximab, used to treat lymphoma and leukemia. That was roughly three times the average sales price.
• Forsyth Medical Center in Winston-Salem, owned by Novant Health, collected about $680 for 50 milligrams of cisplatin. The markup: more than 50 times the average sales price. Treating a cancer patient with Avastin, for instance, costs about $90,000 a year, doctors say http://www.charlotteobserver.com/2012/09/24/3549634/prices-soar-as-hospitals-dominate.html 5/14/2012 – Oral anti-cancer medications, on the other hand, are generally considered a pharmacy benefit. Instead of a co-payment, plan members often pay a percentage of the drugs’ cost — up to 50 percent, in some cases — with no annual out-of-pocket limit. And these drugs are expensive, often costing tens of thousands of dollars a year. http://articles.washingtonpost.com/2012-05-14/national/35457286_1_lung-cancer-drug-drugs-work-multiple-myeloma-patients RADIATION:
1/4/2013 – The new study was the most comprehensive cost analysis ever, and it compared the costs and outcomes associated with the various types of treatment for all forms of the disease, which ranged from $19,901 for robot-assisted prostatectomy to treat low-risk disease, to $50,276 for combined radiation therapy for high-risk disease. http://www.ucsf.edu/news/2013/01/13370/how-prostate-cancer-therapies-compare-cost-and-effectiveness 3/15/2012 – Using Surveillance, Epidemiology and End Results (SEER)-Medicare data, the researchers looked at 26,163 women with localized breast cancer who had undergone surgery and radiation from 2001 to 2005. They found that Medicare billing for IMRT increased from 0.9% of patients diagnosed in 2001 to 11.2% of women whose breast cancer was diagnosed in 2005.
The average cost for radiation treatment during the first year was $7,179 for non-IMRT and $15,230 with IMRT. Moreover, billing for IMRT was more than five times higher in regions across the nation where the local Medicare coverage determinations were favorable to IMRT compared to regions where coverage was unfavorable. sorafenib (Nexavar) in kidney cancer as an example. “NICE evaluated sorafenib as it was indicated for kidney cancer and determined that it indeed had value, but not $80,000 per year’s worth. The agency said that it would reimburse one-third of the total cost, and if the drug company wants to market their product to 60 million British citizens, they will need to be price flexible,” http://www.ascopost.com/issues/march-15-2012/rising-costs-in-radiation-oncology-linked-to-medicare-coverage.aspx
[8]
——————————————————————
“I put the word “documentary” in quotes above because while the actual film does indeed document very well Burzynski’s seemingly endless battle to win acceptance and approval for his treatment against the FDA, National Cancer Institute, patent challenges and big pharmaceutical companies — and includes very powerful filmed interviews with cancer survivors who say his treatment (in Texas, where it was allowed) saved them — it doesn’t have the kind of critical other-side that one is used to in other documentaries
That last part is true
the movie is one-sided”
Bobby, you do know that Eric Merola offered oncologist and self-described researcher, David H. Gorski
the opportunity to appear in
Burzynski: Cancer is Serious Business, Part II, and he REFUSED, right ?
[8]
——————————————————————
“Of course, why this is might be more apparent if Mr. Getler had realized that Merola’s cousin was a patient of Burzynski (she later died, of course) and that Merola raised funds for his cousin’s treatments on his website
Merola is not impartial
He has skin in the game
He has sunk an enormous amount into Burzynski”
Yeah, just like every other documentary film-maker or director of multiple movies re the same subject (Jaws, Terminator, Predator, Alien, etc.)
[8]
——————————————————————
“Mr. Getler mentions that Shari Bernson, the person responsible for the programming and who appeared in fundraising spots, described the movie as “controversial.”
To someone on the outside, it may appear to be controversial
To someone who understands the science and process of publication and who has found endless descriptions of how patients end up making really, really bad choices out of desperation at that clinic, however, there is no controversy”
The “controversy” is “The Skeptics” who do NOT know how to “Fact-Check,” and instead “Insert Foot in Mouth”
[8]
——————————————————————
“The fact remains that after 35+ years, the Clinic has never produced a single reproducible result that would constitute the barest minimum for serious consideration among experts
It just hasn’t”
That certainly explains the antineoplaston studies done in Poland, South Korea, Russia, Egypt, Japan, China, Taiwan (ROC), and the USA
That China published their most recent antineoplaston A10 study 10/1/2010
Journal of Radioanalytical and Nuclear Chemistry
October 2010, Volume 286, Issue 1, pp 135-140
#Burzynski References: 5. – 6.
[8]
——————————————————————
The Randomized Japan study is scheduled for publication THIS year
“Should that ever happen (I’m not holding my breath), then, hell, yes, we’ll be on board cheering the advance of science”
“But he has to play by the rules
And this is important too, playing by the rules that all real researchers abide to
Part of the FDA’s job is to ensure that Burzynski’s people are doing this
And on February 7th, they were doing just that; they were in the facility inspecting to make sure that Burzynski’s team was playing by the rules
In a FOIA release this week, the FDA revealed a number of things that had been found out and reported to the clinic by the time the movie aired
By law, the Clinic had 15 days to respond, so if they responded, it was before CPT12′s love-in
“The IRB [Institutional Review Board] used an expedited review procedure for research which did not appear in an FDA list of categories eligible for expedited review, and which had not previously been approved by the IRB”
“Specifically, your IRB routinely provided expedited approvals for new subjects to enroll under Single Patient Protocols.”
“[2 adults and 3 pediatric patients are mentioned]”
“The IRB approved the conduct of research, but did not determine that the risks to subjects were reasonable in relation to the anticipated benefits (if any) to subjects, and to the importance of the knowledge that might be expected to result”
“Specifically, your IRB gave Expedited Approval for several Single Patient Protocols (SPP) without all the information necessary to determine that the risk to subjects are minimized.”
“[4 examples follow]”
“The IRB did not determine at the time of initial review that a study was in compliance with 21 CFR Part 50 Subpart D, ‘Additional Safeguards for Children in Clinical Investigations.’”
“Specifically, an IRB that reviews and approves research involving children is required to make a finding that the study is in compliance with 21 CFR Part 50 Subpart D, ‘Additional Safeguards for Children in Clinical Investigations.’”
“Your IRB approved research involving children without documentation of the IRBs finding that the clinical investigation satisfied the criteria under Subpart D.””
“[3 examples follow and there is a note that this is a repeat observation that had been found in an Oct 2010 Inspection.]”
“The IRB did not follow its written procedure for conducting its initial review of research”
“Specifically, the IRB is required to follow its written procedures for conducting initial and continuing review”
“Your IRB did not follow your written procedures for conducting initial and continuing review because these subjects received IRB approval via an expedited review procedure not described in your Standard Operating Procedures”
“If your IRB would have followed your own SOP for initial and continuing review, the following subjects would have received review and approval from the full board rather than an expedited review.””
“[2 adults and 3 pediatric patients are listed.]”
“The IRB has no written procedures for ensuring prompt reporting to the IRB, appropriate institutional officials, and the FDA of any unanticipated problems involving risks to human subjects or others”
“Specifically, your current SOP-2012 v2-draft doc does not describe the requirements on Investigators on how unanticipated problems are reported to the IRB, Institutional Official, and the FDA, such as time intervals and the mode of reporting, or otherwise address how the prompt reporting of such instances will be ensured.”
“The IRB has no written procedures [in the SOP-2012 v2-draft doc] for ensuring prompt reporting to the IRB, appropriate institutional officials, and the FDA of any instance of serious or continuing noncompliance with theses [sic] regulations or the requirements or determinations of the IRB.”
“A list of IRB members has not been prepared and maintained, identifying members by name, earned degrees, representative capacity, and any employment or other relationship between each member and the institution.”
[8]
——————————————————————
“I’m not sure that this round of investigation is over yet, as the audience at the premier of the sequel was apparently told that the FDA was still on site”
“Researchers should not be playing fast and loose with the rules that protect children (a protected subject population, like prisoners and students–yeah, I’m IRB certified)”
“There should be procedures in place to see that proper oversight and reporting of unexpected events is ensured”
“Hell, there was apparently no document even saying WHO was on the IRB!”
“This is not a report on a serious research institution”
“It’s more like the observations of the IRB of a clown school”
How many more businesses with more IRB issues than Burzynski did you find during you intense “Fact-Finding” mission ?
Bob, did you read Burzynski’s publications with their notes about the IRB ?
“Back to Mr Getler’s letter:”
“On the other hand, Bernson’s sidekick on the in-studio, pledge-drive promotion who was interviewing the clinic spokesman, made me gag when she said,
“I’m Rebecca Stevens and I’m proud to be a journalist who asks the hard questions.”
There were no hard questions”
[I believe the question that followed up this statement was, “What is peer-review?”–RJB]
“And where Bernson may have gone too far, depending on who you believe, was in her statement that:
“Antineoplaston therapy has had significant success rates with terminal brain cancer patients and especially in children.”
No, she went too far no matter who you believe, and his next paragraph demonstrates this:”
“The National Cancer Institute, reporting last month on Antineoplastons, said, among other things:
“No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals”
and that they are
“not approved by the U.S. Food and Drug Administration for the prevention or treatment of any disease.”
Aaaand…how’s that controversial?
In light of this, how could Sherri possibly be right?
My bottom line is that CPT12 obviously has a right to show this film
Nobody questions that
“What we wanted, and what was offered to the station, was the opportunity to have an independent oncologist in the studio at the time of the broadcast, you know, to stir up the kind of informed discussion the station says they want to have instead of settling for two True Believers talking to two CPT12 pitch people”
“When the station had that opportunity, they walked away from it”
“That’s indefensible”
Bob, like your man-crush oncologist who refuses to debate ?
[8]
——————————————————————
“Especially when you consider that the people we are worried about, patients and their families, may NOT be as discerning as your average viewer, as CPT President Willard Rowland suggests in his response to the ombudsman:
“The program’s airing is grounded in the station’s mission, specifically those portions about respecting our viewers as inquisitive and discerning citizens, addressing social issues and public concerns not otherwise adequately covered in the community, and cultivating an environment of discovery and learning.”
Some of them haven’t had good news since their diagnosis”
“Then they hear that some lone genius with the cure for cancer is operating in Houston and they are on the next flight down”
“I’ve seen it dozens of times, and I have hundreds more patients on deck to write about”
“These are vulnerable, vulnerable people who deserve the best information from their public broadcasters”
“I’m fairly disappointed by the tepid response, honestly”
“I have a hard time imagining that Mr. Getler, or Mr Willard Rowland for that matter, could possibly think that this program was anything but misleading if they spent a half hour at The OTHER Burzynski Patient Group, which chronicles, in patients’ own words, what goes on in that Clinic”
“All of the people told that getting worse is getting better”
“(for decades being fed the same line!),
the children having strokes
(unrelated to their tumors)
while on the medicine, the “terrifying” amounts of sodium that go into patients”
“The quasi-legalistic threats and phone calls to dissatisfied cancer patients”
“The untested chemo cocktails given to most of his patients”
“None of that was mentioned in the CPT12 fundraiser”
[9]
——————————————————————
“The most common side effect of ANP, hypernatremia, is an effect of the sodium in the mixture”
FACT: Is any citation, reference, or link to an independent reliable source provided for this claim?
NO
FACT: Is “HYPERNATREMIA” listed on the above National Cancer Institute (NCI) at the National Institutes of Health (NIH) list as a possible “Adverse Effect”?
Let’s see what we can find out about “HYPERNATREMIA,” shall we?
2/13/2013 – The frequency, cost, and clinical outcomes of HYPERNATREMIA in patients hospitalized to a comprehensive cancer center http://www.ncbi.nlm.nih.gov/m/pubmed/23404230
Division of Internal Medicine, UT MD Anderson Cancer Center, Houston, TX, USA
Department of General Internal Medicine, University of Texas MD Anderson Cancer Center
Division of Endocrinology, Mayo Clinic
Support Care Cancer. 2013 Feb 13. [Epub ahead of print]
(Supportive Care in Cancer)
DOI
10.1007/s00520-013-1734-6 http://link.springer.com/article/10.1007%2Fs00520-013-1734-6 This 3 month study of 3,446 patients in 2006 found that most of the HYPERNATREMIA (90 %) was acquired during hospital stay
[9]
——————————————————————
“In order to maintain their doses of ANP, patients are required to drink obscene amounts of water every day (some report up to 12 quarts or more)”
“If they fail to do so, they may lapse into unconsciousness or die”
Let’s put this in perspective
FACT: Some sources indicate:
1) A man should drink about
3 liters (101.44 ounces / 3 quarts 5.44 ounces) per day
{12 quarts = 384 ounces = 11.356 liters}
[12 quarts in 24 hours = 1/2 quart or 16 ounces per hour]
2) Extremely healthy kidneys could process about 30 ounces (approx .9 liters) of water in an hour
{30 ounces in 24 hours = 720 ounces}
[720 ounces = 22.5 quarts per day]
3) A person with healthy kidneys could develop water intoxication by drinking about 2 to 3 times what their kidneys can process
So, if extremely healthy kidneys could process about 30 ounces per hour and 12 quarts per day would require one to only drink 16 ounces per hour, that means one is being asked to drink 14 ounces less per hour than what extremely healthy kidneys could process
So even if one drinks more than 16 ounces per hour so that one does not have to be awake hourly, there is still opportunity to do that
Of course, there are certain other factors that might have to be taken into consideration depending on the patient
“There are two cases of children (Haley S. and Elizabeth K.) at The OTHER Burzynski Patient Group who have had strokes unrelated to their tumors, likely because of the treatment”
FACT: Is any citation, reference, or link to an independent reliable source provided for this claim?
NO
FACT: Is “STROKE” listed on the above National Cancer Institute (NCI) at the National Institutes of Health (NIH) list as a possible “Adverse Effect”?
FACT: This is only an “opinion” until it is supported by “FACTS”
[9]
——————————————————————
“For an example of a patient nearly overdosing, see Adam M’s story”
“Patients seem to often end up in the hospital because of the treatment”
FACT: Is any citation, reference, or link to an independent reliable source provided for this claim?
NO
FACT: Is “ENDING UP IN THE HOSPITAL” listed on the above National Cancer Institute (NCI) at the National Institutes of Health (NIH) list as a possible “Adverse Effect”?
FACT: This is only an “opinion” until it is supported by “FACTS”
[9]
——————————————————————
“A surgical oncologist, researcher and patient advocate explains why physicians question Dr. Burzynski’s methods:”
[9]
——————————————————————
“This physician and others declined to be interviewed for the movie because of Merola’s track record of slanted presentation and because of past threats issued by people hired by the Burzynski Clinic”
“Past threats issued by people hired by the Burzynski Clinic”?
FACT: Is any citation, reference, or link to an independent reliable source provided for this claim?
NO
FACT: This is only an “opinion” until it is supported by “FACTS”
[9]
——————————————————————
“What was the “present” from skeptics that was alluded to in the movie?”
“The “present” the Skeptics for the Protection of Cancer Patients (SPCP) delivered to Burzynski on his birthday, was a donation of $14,500 to St Jude Children’s Hospital for research into childhood cancers”
“They challenged Dr. Burzynski to match their donation”
“He did not”
“In fact, some of the interviews in the movie (conducted after the FDA inspection of the Burzynski Clinic, mentioned at the end) were filmed after the fundraiser had been announced, so Merola seems to have deliberately omitted the whole truth, because he certainly was aware of it”
[9]
——————————————————————
“What about the 2-hour rejection from The Lancet?”
“The vast majority of papers that get rejected from The Lancet are rejected within 48 hours thanks to an editorial pre-screening process”
“Most researchers are thankful for this courtesy because it allows them to resubmit to other journals more quickly”
“Why does Merola try to convince the audience that this is evidence of a conspiracy against Burzynski?”
Why bring it up if you really have nothing to add that is relevant?
FACT: The Lancet Oncology will not discuss any submission that may or may not have been submitted to The Lancet Oncology with anyone other than the corresponding author
To do so would constitute a breach in confidentiality
[9]
——————————————————————
“Patients pay a lot of money upfront to enter his clinical trials, presumably believing that the trials will eventually be published”
Is that really the patients’
motivation?
FACT: Is any citation, reference, or link to an independent reliable source provided for this claim?
NO
FACT: This is only an “opinion” until it is supported by “FACTS”
[9]
——————————————————————
“Burzynski has never published the results of those trials but keeps the money:”
[9]
——————————————————————
“Burzynski’s abysmal trial completion record, over sixty abandoned trials, the trust of every patient who participated betrayed”
“If trial completion were a batting average, he’d be batting .016”
[9]
——————————————————————
“Speaking of harassment…”
“Merola does not mention that skeptics only caught wind of the Burzynski story in November 2011, after a teenaged blogger critical of the Clinic received phony legal threats from someone who had been hired by the Clinic to “clean up” its reputation”
“This person, Marc Stephens, sent this high school student images of his family’s home, the message clearly:”
“We know where you live.”
“These threats were well documented in the international press”
“Somehow Merola managed to not mention that in the movie”
Maybe it wouldn’t be so bad if the loquacious “teenaged” high school student got his “FACTS” straight:
“Merola suggests that Amelia Saunders died as a result of her parents taking her off of antineoplaston therapy, that there “confusion and disagreement” between the doctors in the UK and Houston’s reading”
[9]
——————————————————————
“As we get more information about the claims in the movie, we will add additional rebuttals and provide context for understanding what really goes on at the Burzynski Clinic” http://www.anp4all.com I can’t wait http://thehoustoncancerquack.com/fact-checking-burzynski-ii [9]
====================================== Burzynski referenced by other doctors:
Phase II trial of tipifarnib and radiation in children with newly diagnosed diffuse intrinsic pontine gliomas http://neuro-oncology.oxfordjournals.org/content/13/3/298.full
University of California—San Francisco
Children’s Hospital Boston, Massachusetts
St Jude Children’s Research Hospital, Memphis, Tennessee
Seattle Children’s Hospital, Seattle, Washington
Children’s Hospital of Philadelphia, Pennsylvania
Children’s Hospital of Pittsburgh, Pennsylvania
Children’s National Medical Center, Washington, DC
Cincinnati Children’s Hospital Medical Center, Ohio
Neuro Oncol (2011) 13 (3): 298-306
doi: 10.1093/neuonc/noq202 5.723 Impact Factor
25. ↵ Burzynski SR
Treatments for astrocytic tumors in children: current and emerging strategies
Paediatr Drugs. 2006;8:167-178 http://link.springer.com/article/10.2165%2F00148581-200608030-00003
Pediatric Drugs
May 2006, Volume 8, Issue 3, pp 167-178
[10]
—————————————————————— “[T]he emphasis in Phase 2 is on EFFECTIVENESS”
“Phase 3 studies begin if EVIDENCE of EFFECTIVENESS is shown in Phase 2″
[11]
—————————————————————— 9-10/2009 – Stable disease is a valid end point in clinical trials http://www.ncbi.nlm.nih.gov/pubmed/19826356/
strong>10,675 – # of times “stable disease” found on PubMed [12]
—————————————————————— costs (see above)
[13]
—————————————————————— rjblaskiewicz 1 week ago
(@rjblaskiewicz a/k/a Blatherskitewicz)
Mr. R.J. Blaskiewicz, is well known as:
“Bob Blaskiewicz, Faux Skeptic Exposed!”
There are numerous Internet pages and great pictures of him re Atlanta, Georgia, where he was called out, but hid behind his keyboard:
[14]
—————————————————————— Forbes – Waiting for the 10,000
Bob, I thought it funny that “The Skeptics” were allowed to comment freely on #Forbes, without citations, references, or links, while my comments were deleted
Did they ever have 10,000 views like Boris Ogon posted ?
[15]
——————————————————————
Forbes – rjblaskiewicz 6 days ago
“It’s not a thread about the inherent corruption throughout all of medicine.”
“It’s about some bully/man-child trying to shut up critics.”
Mr. rjblaskiewicz (also known as Bob Blaskiewicz), so, like Forbes was?
Bob, how many times did y’all need to “mirror” the video ?
[17]
——————————————————————
David James (@stortskeptic) chat room
(@SkepticCanary)(@_JosephineJones)
Skeptic Canary – blogtalkradio
Man-crush
Freedom from Facts
Informed consent
Phenylbutyrate (PB)
Hypernatraemia
Skeptics are opposed to facts
Bob, you and Gorski did a great job of NOT cover these issues
BB claims his rbutr has been used to “Fair and utterly destroyed it,” in relation to “Burzynski: Cancer Is Serious Business
BB states:
“His son I believe trained in Poland”
Blatherskitewicz, with your phenomenal attention to detail, aren’t you positive?
BB mentions two (2) possible honorary professorships in China for Dr. Burzynski
Call in comments
[18]
——————————————————————
Faux Skeptic
Bob Blaskiewicz (@rjblaskiewicz)
6/3/13, 3:49 PM
@FauxSkeptic @bbc5live I believe he said, “Put up or shut up, you little bitch.” Something like that.
[19]
—————————————————————— March 29, 1996
Then United States Food and Drug Administration Commissioner, David Kessler told the American people:
1. We will eliminate unnecessary paperwork … that used to delay or discourage … cancer research … by non-commercial clinical investigators
2. The … FDA’s initiatives … will allow …the agency … to rely on smaller trials … fewer patients … if there is evidence … of partial response in clinical trials
I don’t want to get into any particular … agent … except let me point out … that … the information needs to be part … of clinical trials
3. We will accept … less information … up front –
4. we’re going to require further study AFTER … approval … because the science … has matured
5. The important – point … is that information needs to be gathered … through scientific means … through clinical – trials … and I think – that’s … that’s very important uhh very … important point
You can’t … just … use an agent here – or there … you have to use it … as part of a clinical trial … so we can get information … on whether the drug works
6. The uhh agency has … many … trials … has has approved trials … for patients … with antineoplastons
7. We are committed to providing expanded access … availability … for American patients for any drug … there’s reason to believe … may work
—————————————————————
A. What is the FDA’s definition of “unnecessary paperwork”?
B. What is the FDA’s definition of “smaller trials”?
C. What is the FDA’s definition of “fewer patients”?
D. What is the FDA’s definition of “evidence … of psrtial response”?
E. What is the FDA’s definition of “less information … up front”?
F. What is the FDA’s definition of “we’re going to require further study AFTER … approval”?
G. What is the FDA’s definition of “We are committed to providing expanded access … availability … for American patients for any drug … there’s reason to believe … may work”?
[20]
—————————————————————— ?
Oncologist
Survival rate 776 15%
2 1/2 million pages
Phase 3 radiation
Lancet
1652 / 335 = 1,799
Accelerated approval
Bob, at least we talked about some of these
[21]
—————————————————————— IRB – FDA
Burzynski’s publications sometimes mentioned IRB was agreed on per FDA
[22]
——————————————————————
Bob Blaskiewicz (@rjblaskiewicz) tweeted at 10:44am – 31 Jul 13:
@TomLemley1 @AceofSpadesHQ @mikespillane The FDA won’t approve his drug until he ever finishes and publishes a trial. clinicaltrials.gov/ct2/results?te…
[25]
——————————————————————
25. 6/20/2013 Mark Burger published a review:
—————————————————————— http://www.yesweekly.com/triad/article-16162-burzynski-cancer-is-.html
——————————————————————
As could be expected, The Skeptics™
showed up
====================================== ANONYMOUS:“I’m afraid you’ve fallen for Dr Burzynski’s PR efforts here”
—————————————————————— LIE: The documentary film is by Eric Merola, NOT “Dr. Burzynski’s Public Relations”
====================================== ANONYMOUS:“In reality, Dr B is a quack and a charlatan of the worst order, and the movie is nothing more than a desperate attempt to try to sell his snake oil to the gullible”
—————————————————————— LIE: After reading through the comments, this sounds like the infamous lying Professor Robert J. (Bob) Blaskiewicz of University of Wisconsin, Eau Claire, “infamy”, who is a charlatan of the first order, and belabors his ignorance by referring to “snake oil”, which as far as I know, has never been approved for phase III clinical trials, unlike Dr. Burzynski’s antineoplastons A10 (Atengenal) and AS2-1 (Astugenal)
—————————————————————— Bob Blaskiewicz (Blatherskitewicz), Faux Skeptic Exposed!:
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/06/07/bob-blaskiewicz-blatherskitewicz-faux-skeptic-exposed/
====================================== ANONYMOUS:“You have to ask why he’s never published any data showing that his treatment works”
—————————————————————— LIE: What people should ask is why does “Professor” @rjblaskiewicz and his other Skeptic pals continue posting idiotic statements like this on the Internet and social media (Twitter) ?
—————————————————————— Critiquing David H. Gorski, MD, PhD, FACS http://www.sciencebasedmedicine.org/editorial-staff/david-h-gorski-md-phd-managing-editor/
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/08/21/critiquing-david-h-gorski-md-phd-facs-www-sciencebasedmedicine-orgeditorial-staffdavid-h-gorski-md-phd-managing-editor/
====================================== ANONYMOUS:“Well, if you believe everything the movie tells you, then perhaps you think it’s because of a huge global conspiracy that prevents him from publishing in any journal anywhere in the world”
——————————————————————
If you want to talk Jesse Ventura type “conspiracy theory”:
1. Why are The Skeptics™ like you too afraid to debate ?
2. Why did your “pal” David H. “Orac” Gorski, MD, PhD, FACS block me on his blog for questioning his infallibility ?
3. Why did Forbes delete my comments when I questioned The Skeptics™? regarding your “pal” Gorski’s “bud”, Peter A. Lipson, MD’s article ?
4. Why did The Skeptics™ Josephine Jones block me from her blog ?
5. Why did The Skeptics™ Adam Jacobs block me from his blog ?
6. Why did The Skeptics™ Guy Chapman block me from his blog ?
7. Why did The Skeptics™ Keir Liddle block me from his blog ?
8. Why do The Skeptics™ whine to Twitter in order to get Twitter to suspend the accounts of people who question them ?
9. Why did Wikipedia block me, using lame excuses ?
10. Why did reddit act like wiki’s little bitch and delete my posts and block my comments because this reddiot davidreiss666 whined like a little bitch ?
——————————————————————
overview for DidymusJudasThomas (reddit.com)
submitted 4 days ago by davidreiss666 to reportthespammers
“Sure, he misrepresented me to my new employers, but that doesn’t actually count as consulting me, now does it?”
“The “birthday surprise” in the movie was a fundraiser for a children’s cancer research hospital that raised over $15K, something I’m rather proud of, actually”
——————————————————————
Nice TRY with your LIE
—————————————————————— Critiquing Bob Blaskiewicz (#Burzynski Cancer is Serious Business, Part II):
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/03/26/critiquing-bob-blaskiewicz-burzynski-cancer-is-serious-business-part-ii/
====================================== ANONYMOUS:“I’d encourage you to look at the other side of the story at The OTHER Burzynski Patient Group”
Just because you think that referring to someone as:
“my little Polish sausage”
is humorous, and therefor we should excuse your behavior because of your below excuse, does NOT mean that it makes it acceptable
“Literally one second after he said that, all of the other participants made jokes about that fact”
(which of course was the point)
“Instead allowing the audience to hear that ribbing, Merola inserted an evil laugh, which was lifted and spliced from minute 18:25 of Virtual Skeptics episode 13”
If you thought that was an “evil laugh”, you’ve got an overactive imagination
“Voices were altered to sound sinister, and menacing music was added”
If you thought voices sounded “sinister” and that was “menacing music”, you must not watch any scary movies
Do you think this is a fair representation or were you misled?
YES
I think it’s a fair representation that you try to mislead people
“What about the 2-hour rejection from The Lancet?”
“High impact journals like The Lancet receive huge numbers of submissions, as their journal is the most prestigious”
“The vast majority of papers that get rejected by The Lancet are rejected within 48 hours thanks to an editorial pre-screening process that helps accommodate this huge work load”
“Most researchers are thankful for this courtesy because it allows them to resubmit to other journals more quickly”
“Why does Merola try to convince the audience that this is evidence of a conspiracy against Burzynski?”
“Eric Merola does not reveal a possible conflict of interest, one that a journalist would feel obliged to share”
“He fails to disclose in the movie that his cousin was a patient of Dr. Burzynski and that he has raised money on his movie’s website for patients to see Burzynski”
Sounds like someone failed to read the Frequently Asked Questions (FAQ) section on the BurzynskiMovie web-site:
====================================== http://burzynskimovie.com/index.php?option=com_content&view=article&id=75&Itemid=55
====================================== “Burzynski has never published the results of those trials but keeps the money:”
“Burzynski’s abysmal trial completion record, over sixty abandoned trials, the trust of every patient who participated betrayed”
“If trial completion were a batting average, he’d be batting .016”
This just shows that you do NOT even know the subject-matter
Have you even bothered to read Burzynski’s publications ?
====================================== Burzynski updates Scientific Publications page:
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/03/12/burzynski-updates-scientific-publications-page/
======================================
Because if you had, you would know that Burzynski has used the clinical trial design proposed by Fleming
====================================== 16. 2003 Trial design – Fleming (Pg. 94)
—————————————————————— 17. 2004 Trial design – Fleming (Pg. 317)
====================================== Protocol Design
2-stage phase II clinical trial design proposed by Fleming used
Initially, 20 adequately treated patients to be assessed
If less than one Objective Response (Complete Response (CR) or Partial Response (PR)) observed, it’d be concluded there was less than desired activity and study would be discontinued
If one or more Objective Responses observed, 20 more patients would be accrued to study
If 4 or more responses observed among 40 patients, evidence would be sufficient to conclude the treatment has desired activity
======================================
One-sample multiple testing procedure for phase II clinical trials http://www.ncbi.nlm.nih.gov/pubmed/7082756/
Journal
Biometrics. 1982 Mar;38(1):143-51 http://www.ncbi.nlm.nih.gov/m/pubmed/7082756/
“These threats were well documented in the international press”
“Somehow Merola managed to not mention that in the movie”
Yes
Marc Stephens’ actions were idiotic
My personal opinion is that he should have done what I am doing, which is showing how “The Skeptics™ lie, misinform, disinform, misdirect, deceive, misrepresent, etc.
Eric Merola did NOT mention your lame blogs either
Why don’t you complain about that ?
“Burzynski has a long history of patients believing that symptoms of getting worse are signs they are getting better”
“Follow any of the links at that site to hear how, in patients’ own words, this EXACT SAME misleading interpretation has been fed to patients for decades”
So, are you a doctor ?
No ?
I didn’t think so, quack
“Merola has publicly slandered Burzynski critics in a way a real journalist couldn’t”
Why can “real journalists” NOT slander someone ?
“We hope this makes it clear that what you are seeing in the new Burzynski movie may not be entirely reliable”
So, like this web-site
====================================== DEBATE E-Mails:
======================================
On Mon, Sep 23, 2013 at 8:04 PM, Didymos Thomas wrote: So now you’re brave ?
Bob Blaskiewicz @rjblaskiewicz
@PDJudasT @robertquickert Hey, Judas. I have no respect for you as a person. Never address me.
1:56 PM – 18 Mar 2013 https://twitter.com/rjblaskiewicz/status/313725494170361856
——————————————————————
On Monday, September 23, 2013, Robert Blaskiewicz wrote: You going to be a rotten little troll or do you want to debate?
—————————————————————— You’re the one who posted this on Twitter
Do NOT try to make me the COWARD
Bob Blaskiewicz @rjblaskiewicz
@PDJudasT @robertquickert Hey, Judas. I have no respect for you as a person. Never address me.
1:56 PM – 18 Mar 2013
—————————————————————— 2/13/2013 (7/2013)
The frequency, cost, and clinical outcomes of HYPERNATREMIA in patients hospitalized to a comprehensive CANCER center
@TomLemley1 @AceofSpadesHQ @mikespillaneThe FDA won’t approve his drug until he ever finishes and publishes a trial.clinicaltrials.gov/ct2/results?te…
https://twitter.com/rjblaskiewicz/status/362599624596393984 Bob, “unable to publish”? Shouldn’t that be “able to publish” but The Lancet Oncology would NOT publish?
—————————————————————— Manuscript reference number: THELANCETONCOLOGY-D-12-01519
Title: Glioblastoma multiforme: a report of long-term progression-free survival and overall survival of 8 to 16 years after antineoplaston therapy and review of literature
Dear Dr. Burzynski,
Thank you for your recent submission to The Lancet Oncology. We have now had time to consider your manuscript and unfortunately, on this occasion, we have decided not to publish it because we believe the message would be better elsewhere.
Although the decision has not been a positive one, I thank you for your interest in the journal and hope it does not deter from considering us again in the future
Josephine Jones (@_JosephineJones) tweeted at.5:21pm – 11.Sep.13:
@Majikthyse @frozenwarning @drpaulmorgan @dianthusmed @oracknows It was about 1hr30 mins into Burzynski Movie II. pic.twitter.com/8n3fQkX0v0
https://twitter.com/_JosephineJones/status/377919961659764736
Eric Merola revealed in Burzynski: Cancer Is Serious Business, Part II (2), at (1:29:53), that The Lancet Oncology Peer Review Team D-12-01519, in 2 hours 8 minutes and 51 seconds, refused to publish Burzynski’s 11/26/2012 phase 2 clinical trial Progression-Free Survival (PFS) and Overall Survival (OS) re patients 8 – 16 years after diagnosis, results
——————————————————————
Temozolomide received accelerated approval by the U.S. Food and Drug Administration 1/1999 for treatment of ANAPLASTIC ASTROCYTOMA (brain cancer) patients
At time of approval, NO RESULTS were available from randomized controlled trials in refractory ANAPLASTIC ASTROCYTOMA that show clinical benefit such as improvement in disease-related symptoms or prolonged survival http://clincancerres.aacrjournals.org/content/11/19/6767.full
Was the United States Food and Drug Administration’s 1/1999 accelerated approval based on the PUBLISHED FINAL RESULTS OF A PHASE II (2) CLINICAL TRIAL?
12/2000 – Temozolomide and ANAPLASTIC ASTROCYTOMA:
5/6/2009 – U.S. Food and Drug Administration (FDA) granted accelerated approval of Avastin (bevacizumab) for people with GLIOBLASTOMA (brain cancer) with progressive disease following prior therapy
effectiveness of Avastin in AGGRESSIVE form of BRAIN CANCER based on improvement in objective response rate
3/15/1999 – 40 / 30.9% – ARM 1: 1 year Patients Surviving: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 17 / 27.0% – ARM 2: 1 year Patients Surviving: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 6 months – ARM 1: Median time to Disease Progression: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 5 months – ARM 2: Median time to Disease Progression: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 8.5 months – ARM 1: Median Overall Survival from start of Treatment (OST): Median time to Death: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 8.5 months – ARM 1: Median time to Death: Median Overall Survival from Diagnosis (OSD): Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 8 months – ARM 2: Median Overall Survival from Diagnosis (OSD): Median time to Death: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 8 months – ARM 2: Median Overall Survival from start of Treatment (OST): Median time to Death: Protocol – easier to treat cases of newly diagnosed BRAIN STEM (tumor) GLIOMA patients: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992–10/1997)
3/15/1999 – 8 months – ARM 2: Median time to Death: radiation therapy and chemotherapy with cisplatin (Mandell et al.) (6/1992 – 10/1997)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2764862/ Phenylbutyrate is a aromatic fatty acid, able to induce hyperacetylation of histones H3 and H4 and growth arrest, differentiation and apoptosis of AML cell lines and primary leukemic cells. It has been effectively used to induce fetal erythropoiesis in patients with sickle cell anemia and β-thalassemia [105]. The aromatic ring does not contribute to the antitumor activity, as butyric acid is of equal or greater potency at producing these biological changes, while shortening of the fatty acid carbon chain length, as demonstrated with phenylacetate, significantly diminished drug potency [106]. After administration phenylbutyrate is metabolized to phenylacetate, then to phenylacetylglutamine and eliminated by urine [107]. The maximum tolerated doses, when administered as a 7-day continuous infusion, was 375 mg/kg/day, while higher doses were associated with encephalopathy apparently attributable to accumulation of the metabolite phenylacetate. At the maximum tolerated dose (MTD), median steady state concentration of phenylbutyrate is 0.3 mM, which is less than the ED50 of 1-2 mM required for differentiation and cytostasis in vitro but in within the concentration range in which phenylbutyrate
induces acetylation of histones. Dose-limiting toxicities were mainly represented by neurocortical toxicity, including lethargy, confusion, and slurred speech, which completely disappeared within 24 to 48 h upon cessation of the infusion. Non dose-limiting toxicities were hyperammoniemia, hyperuricemia, hypocalcemia, skin abnormalities and interstitial pneumonia [108, 109].
Bobby Blaskiewicz Bows Up ‘Bout Burzynski; https://stanislawrajmundburzynski.wordpress.com/2013/09/24/bobby-blaskiewicz-bows-up-bout-burzynski/