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
“He also stated quite frankly during the Google Hangout that nothing will ever change his mind”
—————————————————————— Woo, Bob did NOT provide enough evidence that would cause me to “change my mind”
—————————————————————— “So what’s the point of any further discourse?”
—————————————————————— Woo, the point is, it gives you the opportunity to explain why you lied to The Guardian [2]
—————————————————————— “His idea of “debate” is having critics post comments on his blog; whether that is to drive up page views or merely to seek attention we’ll never know”
—————————————————————— Woo, who suggested leaving comments on my blog ?
Bob ? [3]
9/28/2013 Google+ Hangout
—————————————————————— 1:13:00
—————————————————————— “Okay, I’ll look at that, and I will respond to it once I’ve taken a look at that, okay ?“
“Um, and I’ll respond on your web-site“
“Um, seems only fair“
—————————————————————— 1:14:00
—————————————————————— 2:09:00
—————————————————————— “… and don’t worry I will go to your site and I will comment on on on what you’ve run“
—————————————————————— 2:10:15
—————————————————————— 2:18:00
—————————————————————— “Um, I will look at your web-site, and we will, uh, we, uh, you, oh make sure that I I go to your blog and and I talk there“
—————————————————————— 2:19:00
—————————————————————— “What none of us understands is his motivation”
“I have discussed this privately in e-mails with Bob B. and you, Guy”
“When asked about this during the session on Saturday all he said was that he wanted to correct what he perceives as misinformation from Burzynski critics on social media”
—————————————————————— Woo, you’re obviously NOT from Texas
It’s like a whole ‘notherCountry
My motivation ?
I am a Texan and an American and I do NOT have any respect for individuals who lie about cancer treatment on social media
Verstehen ?
There’s a saying:
“Don’t mess with Texas”
—————————————————————— “It has to go deeper than that”
“He didn’t wake up one day and out of the blue decide he was going to champion Burzynski”
“He has to have some connection, either personal or commercial”
—————————————————————— Woo, you’re still wrong
Prove it
—————————————————————— “The sheer amount of time and effort he’s pored into writing hundreds, if not thousands of comments on science blogs, his rabid attempts to edit Wikipedia and his own blog posts indicates he something invested”
—————————————————————— Woo, why don’t you count the amount of comments I posted on “Orac’s” Respectful Insolence science blog and let everyone know the results ?
—————————————————————— “He denied he works for Burzynski as he stated he doesn’t even live in Texas anymore, but that is irrelevant”
“I don’t believe Marc Stephens lived in Texas for the duration of time he represented the clinic”
—————————————————————— Woo, who cares what you think about Marc Stephens ?
Prove it
—————————————————————— “I wish he would just be honest and tell us why he has spent devoted so much of his time over the past year (almost) promoting and supporting Burzynski (and Merola, for that matter)”
—————————————————————— Woo, where have I been “promoting and supporting” them ?
Everything on my blog is devoted to showing how “The Skeptics™” lie
—————————————————————— “I was going to say it would be hard to go back to calling him an idiot after hearing him speak on Saturday, as he became humanized”
—————————————————————— Woo, I have no problem calling you an “idiot” after you lied about me [2]
—————————————————————— “His folksy “y’all” and his laughter made him a real person”
“He was no longer just words on a screen, but a living, breathing human being”
“However after seeing the Tweets he posted immediately following the Hangout, where he reverted to his juvenile insults, his name-calling, his inability to write a coherent sentence and his out-and-out lack of respect for people like you and Dr. Gorksi has made me reevaluate my stance”
—————————————————————— Woo, please cite one of these “supposed”Tweetsyou have a problem with
Surely you did NOT think I was giving Bobcarte blanche to continue on Twitter without proving his case ?
—————————————————————— “He simply deserves to be ignored”
“He has a serious personality disorder and doesn’t merit any of our attention ever again”
—————————————————————— Woo, my personality is serious enough NOT to lie about people to The Guardian
Do you have a serious “compulsive liar” personality disorder ?
====================================== Guy Chapman – 10/2/2013 – 12:26 am
“He kind of admitted it when he said that he’d be persuaded by the FDA not having granted phase 3 approval; defining your rejection criteria according to some test whose outcome is already know is one of the techniques used by homeopaths”
—————————————————————— Guy, which homeopathic “remedy” has received Orphan Drug Designation (ODD) and FDA Phase 3 approval ?
—————————————————————— “You do not interpret this thing as I would like, therefore you are denying this thing happened, therefore you lie, is another,”
—————————————————————— Guy, what massive cognitive dissonance dreamworld are you living in ?
====================================== Guy Chapman – 10/2/2013 – 12:28 am
“Actually, we know what he is”
“A troll”
“Why did we let ourselves get sucked in?”
—————————————————————— “Troll” is an excusecowards use to try and label someone in order to claim that they should NOT be put in a position to do something they agreed to
====================================== IamBreastCancer – 10/2/2013 – 12:27 am
“Excellent summary, Guy”
“I agree with WooFighter that his motivation is suspect, but there are some desperately lonely attention-seeking people out there who will grasp onto any controversial issue just to get “in the game.””
“As a cancer patient myself, I was struck by the fact that he could yammer on for almost 2-1/2 hours without showing a shred of concern or compassion for cancer patients or legitimate cancer treatment questions”
“His behavior before, during and since the debate clearly shows he absolutely has no regard for real facts or evidence”
“I’m thankful that he’s unable to write coherently, as it cripples his capacity for causing harm to cancer patients”
“Unlike so many other charlatans out there, I don’t think he represents much of a threat to patient safety, just a lot of noise and bandwidth waste”
“His 15 minutes of fame needs to end”
—————————————————————— Quidama, I’m sorry you have cancer, but it sounds to me like you seriously need a “reality check”: [4]
—————————————————————— A. Tried to “control the conversation” 1. Bob Blaskiewicz
2.
—————————————————————— B.Interrupted the other individual the most: 1. 30+ – Bob Blaskiewicz interrupted DJT
2. (20+ back at ya) – DJT interrupted BB
—————————————————————— C.Asked the most questions: 1. Bob Blaskiewicz
2.
—————————————————————— D.Most speaking time: 1. Bob Blaskiewicz
2.
—————————————————————— E.Most words: 1. 13,933 – Bob Blaskiewicz
2. 8,847 – DJT
—————————————————————— F.Most characters: 1. 66,123 – Bob Blaskiewicz
2. 43,245 – DJT
—————————————————————— G.Acted as if they were teaching a class, and dictating what your possible responses were, implying that they did NOT consider this to be a “debate” where the participants were free to choose their own responses: 1. Bob Blaskiewicz
2.
—————————————————————— H.Proved they do NOT know how to debate 1. Bob Blaskiewicz
2.
—————————————————————— I.Proved they do NOT have manners 1. Bob Blaskiewicz
2.
—————————————————————— J.Must have thought they were on the Morton Downey Jr. talk show (or do you prefer Jerry Springer ?) 1. Bob Blaskiewicz
2.
—————————————————————— K.Controlled themself best:
1. 2. DJT
—————————————————————— L.Did NOT need help from any pro-position pundits
1. 2. DJT
—————————————————————— “Thanks for all you do!”
—————————————————————— You’re welcome
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
======================================
When I mentioned Ben and Laura Hymas to Bob Blaskiewicz during the Saturday Google+ Hangout, and suggested that I should compare it to the patient stories he “embellishes”, he suggested I review his patient stories instead
So what am I doing ?
I’m reviewing the patient story of Laura Hymas
However, my goal is to provide a perspective of her mood, health, treatment, and support network, so that readers can get an idea of what someone with cancer; who does not yet know that they have cancer, may be experiencing, so if they note similar experiences or symptoms in themselves or others, they will know that they most likely should seek professional medical assistance, and also be able to use it to compare to other “patient stories”
Laura Hymas: Kent, United Kingdom
Ben: fiancée
Jacob: son
—————————————————————— (I will be doing a little data clean-up)
Note how I do NOT “embellish” Laura’s story by adding extemporaneous commentary like Bob Blaskiewicz
—————————————————————— 2005 – Laura met Ben: knew instantly wanted to start family with him []
When first met Laura 3 years ago beautiful, bright and energetic girl [2]
loyal, kind hearted and has a smile so infectious that it can light up any room [2]
——————————————————————
started planning to marry and grow family [2]
======================================
====================================== MOOD
======================================
====================================== 1/2009 – Laura pregnant[]
a) delighted to be having a baby but pregnancy wasn’t easy []
b) suffered terrible morning sickness so severe had to be admitted to hospital []
—————————————————————— 4/2009 – morning sickness stopped at 16 weeks, from then on felt exhausted []
—————————————————————— 9/2009 – Jacob born[] [2] []
9/2009 – []
a) felt like happiest woman in the world
b) began planning to marry and grow family
c) adored being a mum []
d) knew wasn’t depression because felt so happy being a mum []
—————————————————————— 9/2009 – 12/2010 – []
a) felt never fully recovered after the birth and over 15 month period
b) certain wasn’t depressed
c) was so happy but exhausted all the time
d) convinced there was something wrong and so frustrating not knowing what
e) so tired even good nights sleep couldn’t get up in the morning to take care of Jacob when Ben went to work; stay in pajamas all day
f) at wits end
g) causing a lot of stress at home
—————————————————————— 5/27/2010 – []
a) felt like luckiest woman alive []
b)son Jacob just celebrated 1st birthday and she and fiance Ben were busy planning wedding[]
—————————————————————— 10/2010 – frustrating as kept wondering if was imagining it [[
—————————————————————— 12/24/2010 – []
a) no one expected anything serious so I just popped along with Jacob []
b) totally unprepared for what doctor said []
c) When doctors dropped their bombshell, just broke down []
d) happiness was shattered
e) thought of Jacob not having me here is heartbreaking []
f) will do anything to see him grow up and determined to beat this []
g) can’t accept going to die []
h) was in pieces []
i) immediately rang mum, Vanessa, who hurried to hospital to comfort her []
j) strange relief to know hadn’t imagined all symptoms, never expected something so terrible []
k) reassured when read stories saying people did live normal lives with this sort of tumour []
l) huge relief []
—————————————————————— 12/2010
a) felt couldn’t accept there were no other options []
b) felt confident []
c) so angry but had no choice []
—————————————————————— 2/2011 – []
a) Being unable to care for son made feel so depressed
b) felt like life was slipping away
c) No words can describe how much this news and period of time affected us as a family
—————————————————————— 4/2011 – []
a) had devastating effect on her as young mum, and affected every part of lives because at moment cannot enjoy time and plan future like any other normal young family []
b) everyone was in for further shock []
c) left reeling when doctors said tumour had grown rapidly []
d) couldn’t believe it []
—————————————————————— 5/27/2011 – confident will get there and beat this [9]
—————————————————————— 6/2011
a) felt very confident, almost empowered []
b) Given situation felt had nothing to lose []
c) astounded by generosity and kindness of general public []
—————————————————————— LAURAS TUMOUR [1]
—————————————————————— news hit very hard and also devastated her family and friends [1]
Until something like this happens, you dont realise how much of an effect it has [1]
fun loving girl who’s taken to motherhood like a duck to water, son is so lucky to have her because she always puts him first [1]
illness crept up slowly and was affecting long before diagnosis because it was eating away at health and energy which was so frustrating for when wanted to be energetic mum doing loads of things with Jacob [1]
awful diagnosis had positive and negative effect, fact now knows what was wrong is huge relief because knew deep down something was wrong, but its awful news at same time [1]
—————————————————————— 6/27/2011 – Anyone who has been or is going through a life threatening illness will understand power of positivity and support network of friends and family [15]
—————————————————————— faces race against time to travel to US for treatment she hopes will save her life []
—————————————————————— 7/8/2011 – [18]
helped stay positive and strong as a family even in difficult times [18]
worried how long it would take before could start treatment [18]
has been so strong and positive throughout journey, im so proud of her for being such an amazing fiancee and an amazing mum to Jacob – not a day goes by where she doesnt make us smile and keep our home life normal for Jacob at this important time in our little mans life…a really special person [18]
—————————————————————— 7/28/2011 – had agonising wait for results on Thursday
—————————————————————— 8/3/2011 – [21]
MIXTURE OF FEELINGS THIS MORNING [21]
never happy with just sitting around [21]
spent months researching all kinds of brain tumour treatment protocols looking for most successful, non harmful type of treatment currently available in the world and even speaking to past patients about their experiences, led us to front door of controversial Dr. Burzynski’s clinic in Houston this morning…somewhere that gives us all a bit of Hope [21]
Driving to clinic we were nervous about how today would be but as soon as we walked through the door we were met with friendly faces and felt instantly at ease [21]
left clinic feeling relaxed, like were in right place and the day had gone great, been prescribed treatment she wanted and with any luck will be having 1st dose this Friday [21]
—————————————————————— 8/8/2011 – [3]
a) tiredness
b) like having another baby!
c) it’s really worth it [3]
—————————————————————— 8/8/2011 – future was still very uncertain [55]
at times a whirlwind, extremely stressful [55]
—————————————————————— 10/2011 – [10]
a) times when feel like giving up [10]
b) only have to look at Ben and Jacob to know life’s worth fighting for [10]
c) determined to give treatment my best shot [10]
—————————————————————— 1/10/2012
bit of a difficult week this week, hadn’t been sleeping well due to MRI scan booked [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted, worry tumour suddenly started to grow again [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
get to few days before next scan even sillier things start to cross mind like “I’ve eaten lots of chocolate and had a few KFC’s since last scan was my diet really bad and hasthat made it grow!?!” [40]
all sorts of worries will go through mind at this point, like anyone else in this situation will understand [40]
trying to describe just other day what its like being told has malignant brain cancer [40]
(still hate those words) [40]
its impossible to describe but so awful makes you feel like you’re character in film “Saw” [40]
Like someone has put time bomb inside your head, it will grow fast and more it grows you will slowly become more disabled, doctors tell us that current available medicines can only slow it down..there are never any survivors 12-14 months (1 year – 1 year 2 months) from diagnosis is prognosis [40]
Eventually it will win, and you will lose the fight [40]
Sometimes in morning wake up and for few seconds forget have one, everything is normal, then reality hits again [40]
so anxious at this point, think they could tell [40]
WOW [40]
burst into tears [40]
so shocked, amazing start to 2012 [40]
—————————————————————— 1/13/2012
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
fret before a scan [43] eat bad food [43] made stay up late some nights watching TV instead of resting [43]
all sorts of worries will go through mind at this point [43]
diagnosed with tumour just over year ago, describes what it’s like living with malignant brain tumour [43]
it’s so awful it makes you feel like a character in the film ‘Saw’ [43]
like someone has put time bomb inside head, it will grow fast and more it grows you will slowly become more disabled [43]
Eventually it will win and you will lose the fight [43]
feel fortunate given chance to at least try treatment [43]
About improvement, burst into tears [43]
so shocked, what an amazing start to 2012 [43]
—————————————————————— 2/8/2012 – [47]
big milestone of a day [47]
just wanted to wear something to cover the site where tumour is, area has biopsy scar and hair is much thinner from radiation [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday – scary time as always [48]
—————————————————————— 3/25/2012 – taking small steps but feeling more like old self all the time [49]
—————————————————————— 4/5/2012 – “scan week” always stressful time [50]
—————————————————————— 5/19/2012 – diagnosed 17 months ago now and even on hardest days never given up hope [52]
—————————————————————— 6/22/2012 – [53]
Everything takes toll eventually [53]
feel fine now and have caught up on sleep, for 6 days while off treatment awaiting blood culture results was almost as if nothing was wrong, in perfect health so breath of fresh air to have no IV bag to carry around [53]
fleeting moment of “normality” for our family again [53]
—————————————————————— 7/4/2012 – [54]
been emotional rollercoaster, when look back over past year and a half [54]
has certainly been a life changing experience for us and all of our family [54]
extreme stress of situation is starting to wear off and starting to feel able to relax a little now and do “normal” things most families probably take for granted like planning ahead into future rather than living day to day [54]
don’t think its possible to describe personal experience like this, much like amazing feeling of becoming a parent you have to experience it first hand to really know what its like [54]
—————————————————————— 8/8/2012 – When look back feel like looking at someone else’s life [55]
—————————————————————— 8/29/2012 – [55]
its been well worth all the hard work and effort [55]
Mentally stayed so strong despite over past 12 months (1 year) having not slept full night due to infusions – calculated has had at least 2150 ninety minute infusions to date [55]
These days, life is much more hopeful and slightly less stressful [55]
—————————————————————— 11/27/2012 – [56]
fight this every day for almost 2 years without ever once faltering or giving up [56]
Jacob has been here to give a reason to be strong and his unconditional love has been a huge part of healing process [56]
couldn’t be happier [56]
—————————————————————— 1/2013 – Dr Burzynski has given me and my family the future back and I am eternally grateful [3]
appreciate every minute of every day [3]
I’ll finish treatment but have my life back [3]
Who knows what tomorrow holds ? [3]
======================================
====================================== HEALTH
======================================
======================================
6/2011 – [47]
whilst having radiotherapy lost all hair which fell out very quickly – in a matter of hours – too quickly to really have any time to get used to the idea [47]
(if thats possible) [47]
for woman it can be a really big part of their identity, especially if you’re just 25 years old [47]
——————————————————————
1/12/2012 – [40]
When has scan every 6 weeks to find out how treatment is going go through different emotional stages [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
eat bad food, stay up late some nights watching TV instead of resting, dragged round country parks for walks [40]
(probably in hind sight exercise is very good right now) [40]
——————————————————————
1/13/2012
has good days and bad days [43]
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
next day have really good day … then might have epileptic seizure, even though has a LOT less of them now [43]
4/5/2012 – feeling really good apart from sinus infection unrelated to tumour or medication [50]
—————————————————————— 6/15/2012 – suspected Hickman Line infection, really exhausted and had cold shivers [53]
——————————————————————
======================================
====================================== TREATMENT
======================================
====================================== 1/2009 – suffered terrible morning sickness so severe had to be admitted to hospital [10]
—————————————————————— 5/2009 – morning sickness stopped at 16 weeks [10]
—————————————————————— 9/2009 – Jacob born [2] + [10]
visited GP dozens of times [10]
At 1st doctor thought was baby blues but months after Jacob born, still felt tired, diagnosed postnatal depression [10]
came home with anti-depressants [10]
knew wasn’t depression because felt so happy being a mum [10]
didn’t even take the pills [10]
—————————————————————— 5/27/2010 – [10]
—————————————————————— 10/2010 – while family, from Rochester, Kent, were in Lanzarote, developed weakness in right arm [10]
At first thought might have slept awkwardly or pulled a muscle [10]
Some days it was there, some days it wasn’t [10]
Other times felt tingling in fingers [10]
—————————————————————— 11/2010 – [2]
started to lose feeling and co-ordination in right arm which prompted an MRI scan at hospital [2]
health slowly declined over past year, never fully recovered after having Jacob and mis-diagnosed with range of things including exhaustion [2]
breakthrough diagnosis came after another visit to GP’s [10]
had a cold couldn’t shake off and went to see if needed antibiotics [10]
saw different doctor and he could see from notes sometimes been at surgery every week [10]
kept list of symptoms on iPhone [10]
handed it to him and he looked concerned [10]
been visiting surgery with different symptom every time [10]
When he saw them together, warning bells rang [10]
Although he didn’t say he suspected a brain tumour, he sent for tests [10]
—————————————————————— 12/24/2010 – results arrived [2] + [10]
few days later called back for results [10]
had brain scan but also had blood tests and thought was going to get those results [10]
had found something on scan [10]
huge tumour [10]
doctors broke news has rare, inoperable brain tumour [10]
told there’s no cure and it’s growing [10]
bad news was tumour, known as an oligodendroglioma, was inoperable – deep in the brain and removing it would be too dangerous, so all doctors could do was monitor it [10]
diagnosed with rare Brain Cancer and biopsy revealed is most aggressive type of brain cancer, not only is it inoperable because of size and location but also deemed incurable using available cancer therapies in UK, which can only at best slow down growth [2]
Tests showed was low-grade, slow-growing tumour [10]
explained could have had it for 20 years [10]
reassured when read stories saying people did live normal lives with this sort of tumour [10]
average life expectancy poor, fewer than 1 in 100 people diagnosed live for 5 years, this cancer is common in people over 50 [2]
(approx 5,000 diagnosed annualy in UK) [2]
very rare in Laura’s age group, less than 50 cases reported every year in UK and no known cause [2]
told by doctors in UK that brain tumour was inoperable [43]
set out to find an alternative cure [43]
find clinic in Houston, Texas, run by Dr. Burzynski, that pioneers new treatment for malignant brain cancer Laura has [43]
clinic in America has pioneering treatment proven very effective against this type of cancer without harming the body [2]
clinic has been running for over 30 years and has been able to not only stabilise, but potentially cure this awful disease in some cases [2]
treatment not available via NHS [2]
most patients require anything from 2 to 4 years treatment [2]
diagnosed with type of brain cancer for which there is no cure in Britain and wasn’t expected to live more than 12 months (1 year) [37]
Since diagnosed has developed epilepsy and has multiple seizures a day [37]
right arm almost paralysed so has been unable to pick up Jacob or bathe him [37]
—————————————————————— 2/2011 – right arm virtually paralysed [10]
also developed epilepsy and having seizures every day [10]
—————————————————————— 4/2011
biopsy [50]
tumor turned agressive [53]
next batch of test results arrived [10]
results of scan and biopsy [10]
doctors said tumour had grown rapidly [10]
turned into worst form of brain cancer – fast-growing, high-grade glioblastoma multiforme [10]
while they could give chemo and radiotherapy to try to shrink it and prolong life, was nothing more they could do [10]
didn’t have time to lose [10]
No one knows how long has left to live – do know has most aggressive form of brain cancer [10]
If did nothing could be 6 months to a year [10]
after painstaking research found clinic in Houston, US, which offers treatment still under trial and NHS will not fund [10]
In States, critics believe it’s expensive, with no proven results [10]
read stories claiming it worked for some [10]
sent the clinic notes [10]
treatment based on clinic’s 25 years of research showing people with the cancer are lacking tumour suppressor [10]
In people without cancer substance kills growing cancers [10]
clinic doctor believes replacing it with drug will trigger body’s immune system to rid itself of tumour [10]
having therapy to help shrink tumour [10]
—————————————————————— 5/2011 – prescribed 6 weeks radiotherapy coupled with Temozolomide chemotherapy [10]
potential life saving treatment in America [2]
travel to US for treatment hopes will save her life [10]
—————————————————————— 6/2011
1) completed radiotherapy course
2) had to stop chemo after few days because allergic reaction
3) doctors very honest – couldn’t continue TMZ cycles because was allergic to it
4) original oncologist against decision to go to America for treatment because controversial and not yet approved by NICE, or any medical body
5) transferred to another oncologist willing to take me on in London
made fully aware early on that cancer treatment and long term prognosis has improved for most common types of cancers over the years [23]
has been no real improvement in outcomes for Brain Tumours – especially Glioma which although being one of most common cancers, especially in children, are most under funded types of cancer in research arena [23]
spoke to past patients in US and UK, some who were cured many years ago from ‘terminal’ brain cancers using “antineoplastons” at Burzynski Clinic in Houston, Texas [23]
clinic treats many types of cancer with other therapies but for antineoplastons primarily focus on brain cancer because it is one of hardest to treat [23]
Prior to visit to US sent sample of Laura’s brain tumour tissue from biopsy procedure to Pheonix, Arizona [23]
At lab number of tests carried out including gene expression tests, genetic tests used to identify which treatments would be most effective for Laura as an individual – backup plan if antineoplastons had no effect [23]
“FDA approved” Phase II clinical trial – specifically “Antineoplaston A10 & AS2-1” which are treatments pioneered by Dr Burzynski in mid 1970’s [23]
—————————————————————— 7/1/2011
friday finished 6 week radiotherapy course [18]
treatment supposed to be given alongside chemotherapy but 10 days into 33 day course of chemotherapy developed allergic reaction and had to stop particular drug [18]
chemotherapy isnt very effective for everyone with Brain cancer and missing out on this drug also means Laura is so much stronger physically than she would have been otherwise, that coupled with great advice from our nutritionalist Jo Gamble has meant Laura is in amazing shape and able to travel to America safely to start treatment [18]
—————————————————————— 7/2011 – travelled to Burzynski Clinic in Houston end of July to start Antineoplaston treatment and for Ben to be trained on administering medicine by doctors at Clinic
—————————————————————— 7/2011
since starting treatment in America in July, has begun to show signs of improvement [37]
started to get use of paralysed right arm and hand back [37]
has got a lot more energy and is able to go on short walks with Jacob [37]
receive gene therapy at clinic in Texas [37]
treatment involves having daily doses of drugs and scans every 6 weeks [37]
—————————————————————— 7/2011 – 8/2011 – 3 weeks there and came home and continuing treatment
(administered by Ben with very close direction from clinic)
—————————————————————— 7/25/2011 – MRI scan Monday
—————————————————————— 7/28/2011
had agonising wait for results on Thursday
got results “Increase in size of tumour left frontal lobe” and sent straight off to clinic, took few hours to get green light (because of time difference) and by 6:30pm got call we were waiting for from clinic FDA should give special exception without aproblem – Houston here we come [21]
—————————————————————— 7/29/2011 – [21]
Ben bought Friday.morning flights “just incase” [21]
arrived in Houston, Texas Friday.afternoon after trouble free flight [21]
—————————————————————— 7/29/2011 – 8/2011 – [21]
here for next 3 weeks [21]
Thanks to amazing fund raising and generosity from everyone raised enough money to start treatment now rather than 10/2011, this gives a huge head start [21]
would originally been having another cycle of chemo until 10/2011 but allergic to it so means NHS don’t have any more options available at this stage [21]
Chemo isn’t very effective for a lot of brain tumours so isn’t big loss, much better to get onto next step earlier than planned [21]
FDA law prevents clinic treating at this point unless tumour has grown since last scan [21]
(if it had shrunk from radiotherapy would’ve had to wait until end of August) [21]
in catch 22 situation, didn’t want tumour to have grown since April but also wanted to get America ASAP, UK doctors did say not to panic because even if there was growth it could just be post radiotherapy swelling, this put our minds slightly at rest [21]
decided to take additional option on top of standard treatment has come here for, option has only been available here a few months and – huge advancement in world of cancer treatment [21]
sample of tumour tissue sent over from Kings Hospital to Lab in Phoenix, Arizona [21]
Lab running number of different tests on tissue sample and also mapping DNA profile to get “molecular fingerprint” of individual tumour [21]
Everyone’s cancer is unique to them and therefore will respond best to “unique treatment plan” [21]
Lab results will be sent to clinic next week and will tell them exactly what drugs will be effective for unique cancer, and what specific genes are involved in causing cancer [21]
Gene target therapies will also be used to “switch off” genes causing cancer and “turn on” tumour suppressor genes to help stop cancer in its tracks [21]
rather than having “one size fits all” treatment be recommended treatments based on what clinic knows will be effective for individual case [21]
—————————————————————— 8/2/2011 – 1st appointment Tuesday where will finally meet Dr Burzynski in person [21]
—————————————————————— 8/2011
appointment booked at clinic in America for start of August so will be flying out at end of month to start treatment [18]
travel to clinic and began treatment [43]
—————————————————————— 8/3/2011 – [21]
11:30AM CONSULTATION AT CLINIC [21]
journey began 8 months ago (12/24/2010) when diagnosed, found out over following weeks how generally un-successful brain tumour treatment was in UK [21]
day consisted of consultation with Dr Acelar who will be primary consultant [21]
She interviewed in more detail about condition then went off and reviewed MRI scan images with Dr Burzynski as he would have final say over treatment plan to be prescribed [21]
After agonising wait for what seemed like 10 hours but was only 10 minutes Dr Acelar came back into room with Dr Burzynski [21]
this is a guy we’ve been researching about 6 months, has been completely curing what were previously considered to be 100% fatal brain tumours, and by curing I mean for a lot of patients tumours completely disappear [21]
wasted no time explaining exactly how treatment works, basically brain cancer is being caused by up to 600 defective genes, treatment will “switch off” cancer causing genes which will make cancer cells go into “apoptosis” [21]
Apoptosis is natural cycle where cell dies and is broken down by body, in other words tumour will start to break down and dissolve away [21]
know within 4-8 weeks if working and if not then they can add in other gene targeted therapies – based on results of some genetic testing having done at the moment [21]
had bloods and physical examination done [21]
(by another doctor) [21]
and done for the day [21]
due back at clinic once they get approval from FDA to treat – which will take 1-4 days [21]
—————————————————————— 8/4/2011 – [22]
just got call from clinic and now approved for treatment by FDA much quicker than thought [22]
didn’t think there would be any problems because fits criteria, having had previous Radiotherapy which is required before you can have any private treatment from Dr Burzynski [22]
waiting on appointment from doctor who’ll be fitting Hickman Line, which is IV line fitted in chest just below collar bone [22]
Having IV line fitted is more convenient that in arm long term, and allows delivery of higher doses of medicine from IV pump that will become friend for about next 12 months (year) [22]
should be getting fitted in morning (Friday), enabling 1st test dose of Antineoplastons in afternoon [22]
—————————————————————— 8/8/2011 – Burzynski Clinic Houston Texas [55]
11.am connected and switched on pump for 1st ever Antineoplaston infusion, from that moment on would have to have 90 minute infusion every 4 hours – EVERY DAY .24/7 [55]
grade four cancer diagnosis let alone NHS treatment options, alternative medical research and decisions, fundraising, flying to america for a month [55]
—————————————————————— 8/8/2011 – 9/2011 – doctors completely honest, said won’t know IF or how quickly will respond until on treatment for at least 8 weeks
—————————————————————— 8/8/2011 – on antineoplaston therapy since
medicine rich in sodium and have to infuse 2 litres daily
(dose lasts 90 minutes every 4 hours 24/7)
drink approx 5 litres of water daily
while pump running
carrying around infusion pump all day connected to Hickman line in chest
medicine pump
MRI scan at private hospital every 6 weeks
8/2011 – came home
—————————————————————— 08/12/2011
25-year-old Laura Hymas, of High Street, Rochester, has seen tumour shrink by more than a third in just 6 weeks after pioneering therapy in America [37]
already improving since treatment in USA [37]
—————————————————————— 9/2011 – came home and continued antineoplaston treatment, treatment literally takes over and consumes every day of your life [55]
Not specifically side effects because been lucky enough to have minimal short term side effects, but impact on daily life – the infusions, preparing medicine bags, blood tests, etc.. [55]
—————————————————————— 10/2011
hopes to have new treatment in US [4]
took until middle of October to slowly increase antineoplaston dose up to “maintenance dose” Dr Burzynski deems most effective for body weight
hard to see Laura suffer [4]
know in next few weeks going to lose hair [4]
Some people say should accept condition is terminal [4]
—————————————————————— 11/29/2011 -_6 weeks later scan tumour started shrinking by 36% [59]
—————————————————————— 11/2011 – 36% (Nov 2011) [48]
decreased in size EVERY 6 weekly scan [48]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons [52]
(growth stabilised before hitting this dose) [52]
—————————————————————— 1/2012 – 56% (Jan 2012) [48]
decreased in size EVERY 6 weekly scan [48]
—————————————————————— 1/10/2012 – [40]
scan every 6 weeks to find out how treatment is going [40]
such good result last time where tumour shrank so much [40]
there’s amazing doctor in Houston, Texas [40]
friendly, happy and kind man who is always polite and making jokes [40]
sees so many patients but makes real effort to know you as a person, who you are, where you come from, what your story is..how you got to his front door [40]
doesnt promise you anything, cannot help everyone [40]
(1st to admit that) [40]
costs are completely transparent from day one, you even get breakdown of why treatment costs what it does [40]
has many many patients who had inoperable malignant brain cancers that failed chemo and radiotherapy who are not only still alive 20 years later… are now cancer free [40]
Some patients have never had any other treatment for their brain cancer apart from Antineoplaston therapy [40]
(which is what on) [40]
family who live in Kent just 5 miles from us got in touch just before Christmas as they read about us in the local paper [40]
son had been diagnosed with brain tumour [40]
They knew radiotherapy and chemo would only be palliative and having these therapies alone at young age would shorten life let alone brain tumour problem [40]
searched and searched … Eventually like us found Dr Burzynski too [40]
sons tumour decreased in size 72.5% from 1 year just on antineoplaston treatment, then put on low dose of medicine for further 3 years [40]
tumour is still there but hasn’t grown or changed since [40]
NHS oncologist can’t understand how he’a still here [40]
was 8 years old when diagnosed, in 1998 [40]
now 21 [40]
happy healthy young man and just passed university degree, looking forward to future [40]
a lot of criticism about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski is scam artist taking money from dying cancer patients, that terminally ill cancer patients should be discouraged from “False Hope” he gives people [40]
any celebrities that try to help fund raise or appeal for people to donate are bombarded on twitter and internet with messages saying they are helping someone see scam artist and quack [40]
We have been focus of some of these groups, they have been trying to discourage people from donating to us “With Laura’s best interests at heart” [40]
already tried and exhausted currently available “conventional” medicine [40]
countless websites discussing Laura, other current patients with fund raising campagins and Dr Burzynski that contain false information about us all [40]
isn’t new thing to Dr Burzynski, he’s used to it by now but for us it’s distressing [40]
They try to find holes in Laura’s scan results when she reports good news, one person even told Laura on twitter to “F*** off” then he called her a “Burzynski Troll” and justified actions by saying Laura fake patient designed to encourage more people to give money to “Burzynski scam” [40]
REAL Stories about REAL people like the one above from family who live near us are ones that give us strength to carry on [40]
one day critics might decide there’s enough evidence to show treatment works? [40]
Just because they haven’t seen scientific data doesn’t mean something doesn’t work [40]
It’s worked for many [40]
having great response [40]
Tuesday when had scan at private hospital were walking past office afterwards where radiologist would be examining new scan and comparing it to last one taken 11/29/2011 [40]
stood outside to catch attention of secretary so could arrange next scan, at that point I saw through crack in door someone had brain scans on computer screen [40]
radiologist rolled back in his chair and popped his head round the door, our hearts were pumping as we were told we could have the result straight away [40]
radiologist had huge smile on his face [40]
Its looking good, definitely smaller [40]
walked in office, and had new scans from that day on screen with Laura’s scans from 11/29/2011 below [40]
To naked eye obvious to see tumour MUCH smaller and enhancing much less [40]
(less cancerous) [40]
pointed out some things and said haven’t finished measuring but estimate AT LEAST 25% SMALLER than last scan 6 weeks ago 11/2011 [40]
said if hang around in hospital cafe for 15 minutes he’ll finish up report and can have copy [40]
had some lunch and nurse came in short while later with report [40]
better than even initially thought [40]
TUMOUR DECREASED 56% in size since beginning American treatment 8/2011 [40]
most recent scan revealed tumour decreased massive 56% in size since beginning of treatment [43]
scan – 56% tumour decrease! [59]
latest scan shows tumour at least 25% smaller than last scan 11/2011 [43]
decreased 56% in size since beginning American treatment 8/2011 [43]
sent scan CD off straight away by Fedex to America so doctors could do independent report too [40]
—————————————————————— 1/11/2012 – [40]
Yesterday night spoke to doctor at Burzynski Clinic, they’ve reviewed scans and concluded in their opinion tumour has decreased same amount [40]
need to keep on medicine into 2013 [40]
If one day lucky enough for cancer to completely disappear still need to keep on medicine up to 12 months (1 year) after, “maintenance program” designed to make sure kill every single cancerous cell because Glioblastoma Multiforme are very nasty and has “roots” that even an MRI wouldn’t necessarily pick up [40]
If stopped treatment too quickly cancer could return [40]
—————————————————————— 1/13/2012 – [43]
Dr. Burzynski and clinic have been under constant heavy criticism from people believing he’s a ‘quack’ that gives ‘false hope’ to terminally ill people [43]
a lot of criticism out there about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski a scam artist taking money from dying cancer patients and terminally ill cancer patients should be discouraged from “False Hope” he gives people [43]
already tried and exhausted currently available “conventional” medicine.” [43]
diagnosed with tumour just over year ago [43]
Doctors tell us current available medicines can only slow it down – there are never any survivors 12 – 14 months (1 year – 1 year 2 months) from diagnosis is prognosis [43]
keep on medicine into 2013 [43]
—————————————————————— 2/2/2012 – [44]
treatment is working so well [44]
every 6 weeks for MRI scan [44]
—————————————————————— 2/9/2012 – [47]
really huge milestone [47]
Day to day been continuing with medicine [47]
attached to IV pump using hickman line in chest and has dose every 4 hours 24/7 [47]
Each dose lasts 90 minutes so really interrupts sleep patterns and makes tired – effectively infuses 2 litres of medicine directly into blood stream every day involves a lot of trips to toilet [47]
medicine high in sodium so on top of this drinks 5 litres of water a day [47]
aren’t any side effects other than toilet trips, extreme thirst while infusing and tiredness [47]
Next MRI scan in few weeks so nerves and worries setting in [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday [48]
77% (Feb 2012) 77% in just 18 WEEKS [48]
decreased in size EVERY 6 weekly scan [48]
scan was even better news – 77% tumour decrease! [59]
just got results and tumour has continued shrinking [48]
now 77% smaller than when started treatment 8/2011 [48]
amazing news, was stable few months while increasing Antineoplaston dose, then hit maintenance dose 10/17/2011 [48]
decreased in size EVERY 6 weekly scan [48]
Glioblastoma Mutliforme is most agressive cancer out there so Laura will need to keep going on treatment for at least another year to kill every single cancer cell [48]
been fighting this cancer for over year now, almost approaching April [49]
This time last year told awful news that brain tumour had changed and was now much more aggressive, had turned very cancerous and future was very uncertain because it was one of worse cancers anyone could get, on top of that it was in worst location too [49]
—————————————————————— 4/5/2012 – [50]
6 weekly MRI scan went well again [50]
tumour now reduced to what doctors believe is small cavity there because biopsy 4/2011 [50]
small edge of cavity is still enhancing on scan [50]
(which means cancerous cells) [50]
enhancing less than last scan, so everything moving in right direction [50]
plan for now is to just keep going and continue daily doses of antineoplaston medication [50]
treatment working so well [50]
—————————————————————— 5/15/2012 – scan Tuesday shows what remains of tumour is now at stage where hardly enhancing at all on MRI scan, enhancement now barely visible without magnifying scan images heavily [52]
“active” (growing/spreading) malignant tumour shows up on MRI scan as bright white area [52]
bright area represents cancerous cells and tumour used to light up like light bulb which was bad news [52]
aim of any successful treatment is to get rid of everything that enhances so no longer have active tumour [52]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons (11/2011) [52]
(growth stabilised before hitting this dose) [52]
reduction in tumour size meant able to stop taking steroids [52]
(designed to reduce brain swelling but have nasty side effects) [52]
epilepsy has got much better, especially in last month [52]
seizures much less frequent [52]
What’s left of tumour – is cystic fluid filled cavity* [52]
*cavity there from surgery (Biopsy) 4/2011 [52]
cavity may never dissapear, might just stay there because brain tissue has been removed [52]
Alternatively cavity may break down very slowly and hopefully dissapear over time [52]
Either way isn’t major problem [52]
—————————————————————— 5/18/2012 – [52]
had chat with doctor over phone last night, as last scan showed very very little enhancement they have now decided to put on “finishing program” of antineoplastons [52]
If patient lucky enough to have tumour stop enhancing then they’re asked to carry on treatment for 8 months, then finish [52]
8 month schedule allows medicine to have time to kill last cancerous cells that aren’t showing up on MRI scan [52]
told once people finish schedule – in most cases – unlikely tumour will return, most people can go on to live normal tumour free life [52]
diganosed 17 months ago (1 year 5 months) [52]
“In the field of Brain Tumours there are no ‘proven’ treatments, only treatments ‘accepted’ by a group of clinicians who practise in that field” [52]
treatment isn’t guaranteed to work for everyone, but there are many long term (10, 20yr) survivors [52]
Using traditional chemo and radiation on inoperable GBM has no long term survivors [52]
—————————————————————— 6/15/2012 – [53]
suspected Hickman Line infection, really exhausted and had cold shivers [53]
Burzynski Clinic very on the ball and didn’t want to take any chances, said had to take off antineoplaston treatment and go straight to hospital so doctor could take blood cultures from hickman line and arm, local doctor arranged for us at very short notice [53]
told by clinic that if infection in line it would have to be taken out and would have to have probably 7-10 day course of antibiotics…then there would be headache of how to get another hickman line surgically fitted because only GP supporting in england [53]
havent seen or had any contact with NHS oncologist since ealier this year, despite good progress so they probably wouldn’t be able or willing to help in this situation [53]
Worst case looking at about 3 weeks without treatment – huge worry because hasn’t missed single day of treatment since 8/2011 [53]
—————————————————————— 6/21/2012 – blood cultures were taken and results were clear, no infection present [53]
started back on antineoplaston treatment again and could forget all problems and what if’s [53]
While off treatment had good chance to rest and relax, something long overdue [53]
hadn’t had full nights sleep for nearly 11 months [53]
medicine is very high in sodium so wake up during doses about 5 times a night for toilet trips and drinks [53]
totally burnt out last week so suspect cold shivers and exhaustion were just where needed a break and also past year catching up emotionally [53]
been rollercoaster, on autopilot so don’t think taken 5 minutes to stop and think about whats happened to family, extreme stress of situation, fundraising and worries about raising enough money, trip to america, treatment and all the controversy it attracts [53]
—————————————————————— 7/4/2012 – [54]
had MRI scan last week and despite being off treatment for 6 days prior to scan [54]
(due to suspected IV line infection) [54]
NO CHANGES [54]
back on antineoplaston treatment again and still scheduled to finish treatment at end of year [54]
really lucky to catch tumour early [54]
last year only initially had 3 options which were surgery, radiation and chemo [54]
did enormous amount of research and even got MP involved with discussions with head of PCT, they confirmed all standard approaches were palliative, designed to buy time – not something we were told by oncologists, who refer to these 3 modalities as “a radical treatment approach” and give little information apart from “we’ll see what happens” [54]
they are same options that’ve been used for decades – where is the progress? [54]
Being an inoperable tumour our only options left were radiation and chemo [54]
Knowing that best radiation can do is slow down growth [54]
(in some cases) [54]
If it worked that would only be small window of time [54]
was unable to take more than few days of chemo due to allergic reaction [54]
(which in fact, looking back was actually a normal body reaction to taking a highly toxic substance) [54]
Would American treatment work or would Dr Burzynski be a crook just like all the sceptics were saying? [54]
—————————————————————— 8/2012 – no trace of Tumor at all [59]
always get 2nd opinion from UK radiologist who confirms just cavity left which should resolve over time [59]
last update just after MRI scan, at which time both Dr Burzynski’s radiologist and private UK radiologist both confirmed there was no trace of residual or recurrent brain tumour on MRI scans [56]
—————————————————————— 8/29/2012 – [55]
Scan: one year on treatment! on Wednesday [55]
Burzynski Clinic advised all they can see on MRI scans is scar tissue, cavity present from where tumour used to be [55]
UK radiologist was more cautious initially [55]
(probably because he has never seen a Glioblastoma dissapear before!?) [55]
he reported on scan and came to same conclusion as Burzynski Clinic [55]
reported today he beleives all he can see is small cavity/scar tissue too [55]
fact that 2 parties don’t have any contact gives us great confidence in the 2 mirroring reports [55]
—————————————————————— 9/2012 – had scan [56]
—————————————————————— 11/1/2012 – Laura Hymas’s MRI assessment from Dr. Burzynski 11-01-2012
So this is uh a girl who came to see you uh this year, last year
Yes
I think this is after approximately uh 4 months of treatment
4, maybe 5 months
So she’s, been on treatment 4 months, and this is when she came to see you here
This was in Ju
I’m sorry, this was in July so this must be 6 months
6 months (both)
Yeah 6 months, yes
So this was July, and this was the next one that she had
That’s right
This is November, and uh, here is now, January
That’s a substantial difference, certainly
And this is with no chemotherapy
No chemotherapy
Just the uh
Just antineoplastons only
Yes
And, and what type of tumor did she have
Only, oh one, this is glioblastoma
This is the highest malignancy tumor
Yes
So you must be pretty happy with this
Well, she did very well
I’m very glad
Yeah
Sure
So maybe next one
Especially, since it was not necessary to use any other treatment
And actually, the response was somewhat slow and we thought that perhaps it would be necessary to add additional treatment, but since she got such a nice decrease we hope we can avoid any further treatment
Yeah
But this looks great because in addition to decrease in the tumor, we see also shrinkage of uh the cavity after, the operation
You mean the cavity around
That’s right
That’s right
The cavity here
Okay
So, this also, this is also the case which means that there is certain degree of repair, from the damage that was done by the procedure
Yes
That’s correct
She had a biopsy, didn’t she
That’s right
That’s tight
Yes
Yeah
So lets hope that perhaps another 2 months or 4 months it will disappear completely
—————————————————————— 11/27/2012 – scan this morning, confirm again nothing present, which is amazing news we all couldnt be happier [56]
—————————————————————— 12/25/2012 – scheduled to finish treatment just after Christmas [52]
—————————————————————— 1/2013 – It’s GONE
continuing antineoplaston treatment until end of treatment course in 1/2013 and will then have regular MRI scans to ensure tumour doesn’t re-occur
just taking time to relax and see out end of Antineoplaston treatment, which all being well will finish 1/2013 after next scheduled MRI scan [56]
finish treatment [59]
======================================
====================================== THOSE WHO MADE IT POSSIBLE:
======================================
======================================
5/12/2011 – Fundraising Launch! Thursday
such an amazing response and so many emails
Thank you so much to everyone, friends, family, friends of friends and even the people who have donated and dont even know us, we are really touched by your kindness
——————————————————————
7/8/2011 – family and freinds – parents, especially Laura’s mum and dad [18]
======================================
====================================== THE PEOPLE:
======================================
======================================
Alice – heard about us because her brother plays football with Laura’s nephew Joe [49]
——————————————————————
6/26/2011 – Bergin, James – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
Catlin (Alice friend Catlin) [49]
——————————————————————
8/3/2011 – Dan – Anglo-Texan friends [21]
——————————————————————
Danielle (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
Elaine (Laura’s sister) [49]
——————————————————————
Figg, Keri – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
Hills, Kirsten – Journalist from BBC
18:00! re-run at 22:30 [7]
——————————————————————
5/19/2011 – Hound, Rufus sent Twitter video to his 236,293 followers Thursday [8]
7/8/2011 – received almost £20,000 in 12 hours then more donations over following weeks as people continued to spread the word about the video [18]
7/8/2011 – Broken the £50,000 Barrier! – Update on Laura Friday: only started fund raising around 6 weeks ago! [18]
——————————————————————
6/26/2011 – Ben and 2 friends – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
5/31/2011 – Hymas, Eve (Evie) (Bens sister) – 12hr golf marathon Tuesday 7am [11]
5/31/2011 – friends at their schools who have donated to the fund [11]
5/31/2011 – Hymas, Theo (Brother) – [11]
——————————————————————
7/8/2011 – Les (Laura’s father in law) and his good friend [17]
——————————————————————
5/31/2011 – Jackson, Jemma – 12hr golf marathon Tuesday 7am [11]
——————————————————————
7/8/2011 – Jeffries, Terry …Local artist who gave a print of a beautiful painting of Venice, DeBeers diamond company donated a gold and diamond pen along with a box of 5 tickets to the Proms at the Royal Albert Hall! [17]
——————————————————————
Joe (Laura’s nephew) up north [49]
——————————————————————
Jones, Sandra – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
7/10/2011 – Local Man Donates £5,000 ! Sunday [19]
Lee – local man donated £5,000 after reading her story on leaflet in shop near Jacobs nursery [19]
Ben and Laura’s dad Fred arranged to meet Lee in a coffee shop in Rochester yesterday [19]
——————————————————————
4/19/2012 – Les (Laura’s friend) [51]
——————————————————————
8/3/2011 – Louise – Anglo-Texan friends [21]
——————————————————————
6/26/2011 – Marks, Richard – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
7/8/2011 – Meaking, Len (Les’ good friend) [17]
7/8/2011 – Auction and raffle [17]
——————————————————————
6/17/2011 – Morden, Emily – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
McKenzie, Leon (ex Crystal Palace) [7]
——————————————————————
time to meet Russ – English guy who lives in Texas who heard about us on twitter – he’s offered to let us have a car for free while we’re here saving about £1000 [21]
——————————————————————
Snowdon, Lisa [7]
——————————————————————
Stanley Family [7]
auction off their dad’s signed Manchester City football shirt
——————————————————————
STANLEY, KAYLIE (Kayley) [7]
one of Laura’s oldest school friends, sadly lost her father to Brain Cancer when they were growing up [7]
sell her wedding dress and donate proceeds to the fund
——————————————————————
Steve (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
6/17/2011 – Stevenson, Robyn – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/17/2011 – Stevenson, Sam – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/27/2011 – Taylor, Jessica L E – founder of “Share a Star” charity, Kent [15] http://www.shareastar.org.uk
——————————————————————
6/19/2011 – Willis, Brett – on Sunday completed 60 mile London to Brighton bike ride aim to complete ride in under 5 hours and managed it in 4hrs 51 minutes! [13]
6/19/2011 – raising £619 [13]
6/19/2011 – everyone who sponsored Brett and played a part in helping us raise money for the treatment fund [13]
——————————————————————
5/31/2011 – generously hosted by Roy, Sarah and Woodage, Charlie [11]
5/31/2011 – Woodage, Charlie – 12hr golf marathon Tuesday 7am [11]
——————————————————————
08/12/2011 – funded by £75,000 raised by family, friends and strangers [37]
10/2011 – if does save her life, we can carry on raising money for others in a similar situation [4]
======================================
====================================== BUSINESSES:
======================================
======================================
4/19/2012 – Night Out event Friday that Laura’s friend Les has been busy arranging [51]
——————————————————————
4/27/2012 – Fundraising event is Sponsored Assult Course for kids Friday [49]
All children will be involved and Lofty The Lion, Bolton Wanderers mascot
children are being educated about Laura and her condition, as school feel is very important that children realise these events can occur in people’s lives
Elaine said there will be Barbeque, ice creams etc [49]
——————————————————————
6/27/2011 – London 52 Mile Bikeathon Completed! Monday
——————————————————————
5/31/2011 – public par 65 Bramford Golf Center [11]
5/31/2011 – Tuesday at 7am, 12hr golf marathon (golfathon)
5/31/2011 – 124 holes and almost £500 in sponsorship [11]
——————————————————————
6/12/2011 – Golf Marathon! Sunday
——————————————————————
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday girls are friends of Laura and all wore grey to represent their support of “Wear Grey For Laura Day” as grey represents the colour for Brain Cancer support [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday They all baked and brought cakes in and sold them to customers in exchange for a small donation [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday The branch was dressed up in silver balloons and banners to help raise awareness and set the scene! [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday raising £573.08 !! [12]
——————————————————————
6/20/2011 – Barclays Branch Fund Raiser Monday [12]
——————————————————————
Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425 – Steve and Danielle (their friends) run
——————————————————————
08/12/2011 – enjoyed family trip to Dickensian Christmas Festival in Rochester at the weekend [37]
——————————————————————
7/8/2011 – Golf Tournament Raises £4,040! Friday
Len had charity BBQ at his house last weekend and raised £500 bringing total raised to £4,040 ! [17]
7/8/2011 – arranged golf tournament wednesday Hintlesham Hallf Golf Club in Suffolk, followed by hog roast, raffle some generous auction items, some nice cake [17]
——————————————————————
7/8/2011 – anonymous golfer donated holiday to La Manga with flights, accomodation and 2 rounds of golf included! [17]
——————————————————————
7/4/2011 – Prima Montessori Family Fun Day! Monday [16]
7/3/2011 – Jacobs nursery held fun day on sunday to help raise money for Laura’s fund! [16]
7/3/2011 – nursery staff got together and produced amazing day BBQ, cakes, Tombola, Raffle prizes, Painting and messy play, a Magician/entertainer for the kids, bouncy castle and loads more …including throwing wet sponges
(and later full water buckets!)
at the staff for a few quid!
Mums and Dads even benefited – they got their car washed
(for a small fee) [16]
The family run nursery have been a great support to us and are arranging more events over the next month, we cant thank them enough for their support and the amazing job they’re doing looking after Jacob – he loves his days at the nursery! [16]
6/26/2011 – raise amazing £7,650 in total sponsorship for this event from colleagues at RWE Trading where Ben and James work and RBS where Richard works!
——————————————————————
6/27/2011 – “Share a Star” Supports Monday [15] http://www.shareastar.org.uk
——————————————————————
4/5/2012 – relaxing spa break courtesy of The Willow Foundation [50] http://www.willowfoundation.org.uk
======================================
====================================== NEWS MEDIA:
======================================
======================================
3/25/2012 – in local paper last week article celebrating recent scan showed 77% tumour reduction [49]
——————————————————————
5/15/2011 – BBC SOUTH EAST NEWS [7]
——————————————————————
2011 – BELLA magazine
——————————————————————
5/27/2011 – Daily Mirror Covers My Story Friday [9]
IPC magazines journalist [7]
——————————————————————
‘Pick Me Up’ magazine – has circulation of 400,000 copies sold every week [7]
£500 to Lauras Hope fund for her story! [7]
——————————————————————
5/27/2011 – NewsUK News,Real life: I’ll do anything I can to stay alive for my baby 12:01 AM By Mirror.co.uk [10]
——————————————————————
Sky channel 983 – family and friends not in Kent/Sussex & Surrey area [7]
======================================
====================================== REFERENCES:
======================================
====================================== [1] – 12/24/2009 – Laura’s Tumour
—————————————————————— http://www.hopeforlaurafund.co.uk/lauras-tumour
====================================== [2] – 5/8/2011 – Our Original Appeal – 8th May 2011: Welcome to the Hope for Laura Fund
—————————————————————— http://www.hopeforlaurafund.co.uk
====================================== [3] – Hope for Laura Fund blog
—————————————————————— http://www.hopeforlaurafund.co.uk/blog
====================================== [4]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/4
====================================== [5] – 5/12/2011 – Fundraising Launch! on Thursday, 12 May 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-second-blog-post
====================================== [6]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/3
====================================== [7] – 5/14/2011 – Press Coverage! on Saturday, 14 May 2011. BBC SOUTH EAST NEWS & PICK ME UP MAGAZINE
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/press-coverage
====================================== [8] – 5/19/2011 – Twitter Has Gone Mad!! on Thursday, 19 May 2011. RUFUS HOUND GOES THE EXTRA MILE FOR LAURA
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/twitter-has-gone-mad
====================================== [9] – 5/27/2011 – Daily Mirror Covers My Story on Friday, 27 May 2011. COVERAGE AVAILABLE ONLINE AND IN TODAYS HARDCOPY PAPER
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/daily-mirror
====================================== [10] – 5/27/2011 – NewsUK News, Real life: I’ll do anything I can to stay alive for my baby 27 May 2011 12:01 AM By
Mirror.co.uk
—————————————————————— http://www.mirror.co.uk/news/uk-news/real-life-ill-do-anything-i-can-130745
====================================== [11] – 5/31/2011 (6/12/2011) – Golf Marathon! on Sunday, 12 June 2011. On Tuesday 31st May at 7am, Charlie Woodage, Jemma Jackson and Bens sister Eve Hymas teed off for a 12hr golf marathon in aid of the ‘hope for laura fund’
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-marathon
====================================== [12] – 6/20/2011 – Barclays Branch Fund Raiser on Monday, 20 June 2011. Barclays staff members Emily Morden, Robyn Stevenson & Sam Stevenson arranged for the branch in Rayleigh, Essex to have a fund raising day for Laura on Friday 17th June
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/barclays-branch-fund-raiser
====================================== [13] – 6/20/2011 – London to Brighton Ride on Monday, 20 June 2011. A huge thank you from us to Brett Willis who on Sunday completed the 60 mile London to Brighton bike ride in aid of Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-to-brighton-ride
====================================== [14] – 6/27/2011 – London 52 Mile Bikeathon Completed! on Monday, 27 June 2011. Laura’s fiancee Ben and two friends (James Bergin and Richard Marks) completed the London Bikeathon yesterday to raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-52-mile-bikeathon-completed
====================================== [15] – 6/27/2011 – “Share a Star” Supports Laura on Monday, 27 June 2011. Jessica L E Taylor, the founder of the “Share a Star” charity gave Laura a personalised gift of a Star to hold with her when visiting the hospital having treatment and to take to America with us when we visit the clinic
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/share-a-star-supports-laura
====================================== [16] – 7/4/2011 – Prima Montessori Family Fun Day! on Monday, 04 July 2011. Jacobs nursery held a fun day on sunday to help raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/prima-montessori-family-fun-day
====================================== [17] – 7/8/2011 – Golf Tournament Raises £4,040! on Friday, 08 July 2011. Laura’s father in law Les and his good friend Len Meaking arranged a golf tournament on wednesday to raise money for Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-tournament-raises-4040
====================================== [18] – 7/8/2011 – Broken the £50,000 Barrier! – Update on Laura on Friday, 08 July 2011. Following on from the golf tournament we have now broken the £50,000 barrier!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/broken-the-50000-barrier-update-on-laura
====================================== [19] – 7/10/2011 – Local Man Donates £5,000 ! on Sunday, 10 July 2011. Lee, a local man has donated £5,000 to Laura’s fund after reading about her story on a leaflet in a shop near Jacobs nursery
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/local-man-donates-5000
====================================== [20] – 7/30/2011 – Welcome to Houston! on Saturday, 30 July 2011. NOW THAT’S A SIGN WE DIDN’T THINK WE WOULD SEE UNTIL AT LEAST OCTOBER!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/welcome-to-houston
====================================== [21] – 8/3/2011 – Consultation Day on Wednesday, 03 August 2011. WE HAD A MIXTURE OF FEELINGS THIS MORNING. TODAY AT 11:30AM WAS CONSULTATION DAY AT THE CLINIC…
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/consultation-day
====================================== [22] – 8/4/2011 – FDA Approval! on Thursday, 04 August 2011. We just got a call from the clinic and Laura has now been approved for treatment by the FDA much quicker than we thought!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/fda-approval
====================================== [23] – LAURA’S TREATMENT IN AMERICA
—————————————————————— http://www.hopeforlaurafund.co.uk/us-treatment
====================================== [24]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/2
====================================== [25] – 8/6/2011 – IV fitted all set for Monday on Saturday, 06 August 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/iv-fitted-all-set-for-monday
====================================== [26] – 8/8/2011 – Kent is near Wales?? on Monday, 08 August 2011. ….i’ll explain the title in a minute :o) Today was first day of antineoplaston medicine at the Burzynski Clinic!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/kent-is-near-wales
====================================== [27] – 8/18/2011 – Treatment Progress Update on Thursday, 18 August 2011. Has it really been 10 days since i’ve written the last Blog update?!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/treatment-progress-update
====================================== [28] – 8/24/2011 – Our american journey comes to an end.. on Wednesday, 24 August 2011. After what seems like months, but is only three weeks we have come to the end of this part of our journey.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-american-journey-comes-to-an-end
====================================== [29] – 9/7/2011 – Update since we got back home on Wednesday, 07 September 2011. Sorry for the Radio silence over the past few weeks!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-since-we-got-home
====================================== [30] – 9/9/2011 – Stable Tumour! on Friday, 09 September 2011. Laura had an MRI scan on monday and we got a call from the clinic last night to go over the results
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/stable-tumour
====================================== [31] – 9/15/2011 – Music Festival – Chatham, Kent! on Thursday, 15 September 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/music-festival-chatham-kent
====================================== [32] – 10/3/2011 – Remembering brave friends on Monday, 03 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/remembering-brave-friends
====================================== [33] – 10/21/2011 – MRI results day on Friday, 21 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-results-day
====================================== [34] – 11/21/2011 – Update for November 2011 on Monday, 21 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-for-november-2011
====================================== [35] – 11/30/2011 – MRI Scan Day! on Wednesday, 30 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
====================================== [36] – 12/6/2011 – MRI 2nd Opinion on Tuesday, 06 December 2011.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-2nd-opinion
====================================== [37] – 12/9/2011 – Cancer sufferer Laura Hymas has miracle ‘cure’
—————————————————————— http://www.kentonline.co.uk/kentonline/home/2011/december/9/cancer_sufferer_laura_hymas.aspx
====================================== [38] – 12/21/2011 – Visit to the NHS Oncologist on Wednesday, 21 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/visit-to-the-nhs-oncologist
====================================== [39] – 12/31/2011 – Happy New Year! on Saturday, 31 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/happy-new-year
====================================== [40] – 1/12/2012 – What a start to 2012! Amazing News! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/what-a-start-to-2012-amazing-news
====================================== [41] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
====================================== [42] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012. Click Here if the video doesn’t load –
——————————————————————
——————————————————————
This is an interview with Dr Burzynski discussing Laura’s case and latest scan results!
Please take a look at the video – you’ll be probably as shocked as we were at what Dr Burzynski says at the end of the interview!
======================================
====================================== [43] – 1/13/2012 – Cancer patient’s husband hits back at critics… Jan 13th, 2012 @ 12:54 am › Jonathan Smith-Squire
—————————————————————— http://sellyourstoryuk.com/2012/01/13/burzynski-critics/
====================================== [44] – 2/2/2012 – JustGiving Page & Text Donation on Thursday, 02 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/justgiving-page-text-donation
====================================== [45] – 2/4/2012 – Laura & Hannah Video on Saturday, 04 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/laura-hannah
====================================== [46] – If youre not able to view the video of Laura and Hannah click here
——————————————————————
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
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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/