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
The Daily Mail published an article by Anna Hodgekiss, 11:20 EST, 8 November 2013 | UPDATED: 12:34 EST, 8 November 2013, about Laura and Ben Hymas, and son Jacob, and Laura and Ben’s wedding
“The Skeptics™” a/k/a “The SkeptiIdiots” made an appearance; as could be expected, in the form of Darren Woodward, Warwickshire, United Kingdom, a/k/a Sebastian Armstrong a/k/a @spikesandspokes http://www2.warwick.ac.uk/fac/sci/statistics/staff/research_students/armstrong/
I’m currently a PhD student at the University of Warwick, Department of Statistics and I work under the supervision of Prof. Saul Jacka
My research interests lie in financial statistics
Department of Statistics University of Warwick Coventry
He #whined about the FDA inspectional observations regarding Burzynski, and his SkeptiIdiot pals regurgitated it all over Twitter
This document lists observations made by the FDA representative(s) during the inspection of your facility
They are inspectional observations and do not represent a final Agency determination regarding your compliance
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
——————————————————————
Sparks – “I Predict” (official video)
youtube.com
——————————————————————
3/5/2013 – David H. Gorski
“LOOK AT THE 5 YEAR SURVIVAL STATS AFTER CHEMO IN THIS AUSTRALIAN STUDY” http://www.sciencebasedmedicine.org/index.php/chemotherapy-doesnt-work/
Science-Based Medicine
sciencebasedmedicine.org
======================================
3/5/2013 – Fred Hamlet
LOOK AT THE 5 YEAR SURVIVAL STATS AFTER CHEMO IN THIS AUSTRALIAN STUDY: yurt.facebook.com/photo.php?fbid=3418040376468&set=a.2556921889044t.2113227.1433907906&type=3&src=https%3A%2F%2Fsphotos-a.xx.fbcdn.net%2Fhphotos-ash4%2F295112_3418040376468_1479525257_n.jpg&size=720%2C426
——————————————————————
3/5/2013 – Fred Hamlet
====================================== [1] – 1st 7 comments by “The Skeptics™”
====================================== 34 – # of “The Skeptics™”
====================================== 29 – # Questioning “The Skeptics™”
====================================== 192 comments – “The Skeptics™”
—————————————————————— 44 – Lynne Batik
31 – Fenwicke Bootzin (Sizzling Bacon Scent) Sizzling Burnt Bacon Scent
13 – Robert (Bobby) Blaskiewicz (@rjblaskiewicz)
13 – Adam Jacobs (@DianthusMed)
12 – Jen Abe
10 – David H. Gorski (@gorskon @oracknows @ScienceBasedMed)
7 – Edward Jenner
6 – Guy Chapman (@SkepticGuy)
6 – Fred Hamlet
6 – Rene F. Najera
6 – Darren Woodward (Sebastian Armstrong @spikesandspokes on Twitter)
4 – Angela Campagna
4 – Val Perry Rendel
3 – Amy Hochberg Beaton
3 – Susan Scotvold Goodstein
3 – Karl Mamer
2 – Scott Hurst
2 – Laura Calise Neimeyer
2 – Tsu Dho Nimh
1 – Catherina Becker
1 – Vicky Forster
1 – Jan Gosau
1 – David James (@StortSkeptic)
1 – Terry D. Johnson
1 – Jen Keane
1 – Adam Levenstein
1 – Keir Liddle (@endless_psych)
1 – Matthew Miller
1 – Paul Morgan (@DrPaulMorgan)
1 – Richard Murray
1 – Scott Myers
1 – Andy Roseborrough
1 – Footy Stuff
1 – Tom Steinberg
====================================== 239 comments – Questioning “The Skeptics™”
——————————————————————
112 – Didymus Thomas *
71 – Robert Davis
15 – Jon Barratt
13 – Eric Merola
7 – Bruce Scherzer
4 – Ben Hymas
2 – Bill Doucette
2 – Teresa Kennett
2 – Krassi Kostova
2 – Jessica Ressel-Doeden
2 – Jennifer Woods
1 – Angela Campagna
1 – Jessica Guillory Garza
1 – Melissa Gilbert
1 – Russell David Humphress
1 – Karl Jobst
1 – Anya Matkowski
1 – Susanne McAllister
1 – Terri Miller
1 – Mark Mord
1 – Shannon E. Peters
1 – Chris Rodriguez
1 – Pat Rozek
1 – Cindy Samora
1 – Ric Schiff
1 – Gary Susie
1 – Kevin Thurston
1 – Laura Vincent
1 – Susan Wassenhove
—————————————————————— * Requesting “The Skeptics™” reply when they did NOT, pointing out where they did NOT provide any citation(s), reference(s), and / or link(s) to support their claims
====================================== 38 comments with links – “The Skeptics™”
—————————————————————— 19 – Lynne Batik
5 – Fenwicke Bootzin (Sizzling Bacon Scent) Sizzling Burnt Bacon Scent
5 – Adam Jacobs (@DianthusMed)
3 – David H. Gorski (@gorskon @oracknows @ScienceBasedMed)
2 – Fred Hamlet
2 – Rene F. Najera
1 – Robert (Bobby) Blaskiewicz (@rjblaskiewicz)
1 – Andy Roseborrough
====================================== 131 comments with links – Questioning “The Skeptics™”
——————————————————————
104 – Didymus Thomas *
18 – Robert Davis
8 – Eric Merola
1 – Paul Battista
—————————————————————— * One of “The Skeptics™” made the mistake of commenting that Burzynski, had NOT published any publications
====================================== “The Skeptics™” LIES
—————————————————————— [2] – 3/5/2013 – Adam Jacobs
” … did you know that he’s recently removed all mention of antineoplastons from his website … “
—————————————————————— [3] – 3/5/2013 – William M. London
” … Burzynski’s anti-cancer fantasies … “
—————————————————————— [4] – 3/5/2013 – Paul Morgan
“As for his “gene-targeted” therapy, firstly Burzynski is simply using a cocktail of chemotherapy drugs in a random and haphazard manner with no thoughts as to the potential interactions and unpredictable toxicity of his mix of chemotherapy drugs”
“As for being “gene-targeted”, his approach could be described as “gene-targeted” in the same way as the military regard carpet bombing …”
======================================
======================================
====================================== “The Skeptics™” who got it WRONG
—————————————————————— 3/5/2013 – Rene F. Najera
“I predict this poll and subsequent comments will be taken down by the end of the day”
——————————————————————
This “Skeptics™” must have had CPT12 confused with “The Skeptics™” like Robert (Bobby) Blaskiewicz (@rjblaskiewicz), David H. Gorski (@gorskon @oracknows @ScienceBasedMed), Adam Jacobs (@DianthusMed), and Keir Liddle (@endless_psych), who block people on their blogs
====================================== “The Skeptics™” who did NOT provide any citation(s), reference(s), and / or link(s) to support their claims
—————————————————————— 3/6/2013 – Lynne Batik
“Dr. B is a scam artist who has found a few people he can claim to have cured, and uses those to sucker in far more people who he will bankrupt without curing”
—————————————————————— 3/4/2013 – Amy Hochberg Beaton
“I think Burzynski has proved multiple times over that his $*&% doesn’t work and he is not running a legitimate trial”
—————————————————————— 3/5/2013 – Catherina Becker
“To prey on desperate, dying people, encouraging them to fund raise, risk hundreds of thousands of dollars of debts, for life threatening humbug must be the vilest phenomenon in Medicine”
“To support such behaviour by running adverts for these vultures is equally vile”
—————————————————————— 3/4/2013 – Robert Blaskiewicz
“ANP is toxic as anything!”
“most of Burzynski’s patients never qualify for his trials”
“They all end up taking tons of chemo used off label”
—————————————————————— 3/5/2013 – Susan Scotvold Goodstein
“Airing a film that is nothing more than an advertisement / informercial for Burzynski’s 30 year medical scam is not presenting a fair and balanced program”
—————————————————————— 3/5/2013 – David H. Gorski
“Antineoplastons, however, are neither nontoxic nor an effective treatment”
“In fact, they’re definitely toxic”
“People have developed a dangeros condition called hypernatremia (too high a sodium level) as a result of antineoplaston treatment”
—————————————————————— 3/5/2013 – Adam Jacobs
“Burzynski absolutely does not research “non-toxic” treatments”
“Mostly, he uses conventional chemotherapy, but in a rather amateurish way, using unproven combinations of drugs”
“The treatment that has made him famous, antineoplastons, is highly toxic and has been known to kill people”
—————————————————————— 3/5/2013 – David James
“You run the risk of genuinely endangering people’s lives by exposing them to unproven and ridiculously expensive treatment modalities”
—————————————————————— 3/5/2013 – Adam Levenstein
“do I think that the fraud Burzynski should be promoted with an infomercial on a taxpayer-funded TV station … “
—————————————————————— 3/5/2013 – William M. London
“Colorado Public Television functions as an infomercial broadcast service for false medical prophets (who profit from Colorado Public Television’s irresponsibility)”
—————————————————————— 3/5/2013 – Paul Morgan
“Antineoplaston chemotherapy – despite the claims of Burzynski and his shills – are far from being non-toxic”
“They contain vast quantities of sodium, which results in patients having to ingest vast quantities of water to counteract the overpowering thirst generated by taking in so much sodium”
“Some patients have become grossly hypernatraemic (high serum sodium), others profoundly hypokalaemic (low serum potassium)”
“Others have developed renal failure”
“All these TOXIC SIDE EFFECTS are extremely hazardous and life-threatening”
“If you consider antineoplastons to be non-toxic, you are seriously deluded”
“If you think antineoplastons are not chemotherapy, you are also wrong”
—————————————————————— 3/5/2013 – Tsu Dho Nimh
“You are being co-opted to slather a layer of respectability over Burzynski’s quackery”
“You seem to fit the definition of a media whore … will sell out for ratings”
—————————————————————— 3/4/2013 – Val Perry Rendel
“Do I think magic voodoo bullshit should be used to profiteer from human suffering and desperation?”
—————————————————————— 3/6/2013 – Andy Roseborrough
“Burzynski not only sells
bullcrap for profit at the expense of people’s health, but he tries to silence legitimate criticism via his lawyers”
—————————————————————— 3/4/2013 – Darren Woodward
” … the completely unproven, very expensive treatments sold to vulnerable people … “
” … rather than informing your audience it looks like you are trying to misinform them”
“by what measure are antineoplastines non-toxic, certainly medically they are toxic”
======================================
For years, Gorski has been able to comment on Burzynski’s “personalized gene targeted therapy” with impunity
It’s about time he received some personal attention, leading to heapin’ helpings of not-so-Respectful Insolence
All of the below articles by Gorski were tagged as having to do with:
personalized gene targeted cancer therapy, or mention it
—————————————————————— http://scienceblogs.com/insolence/tag/personalized-gene-targeted-cancer-therapy/
—————————————————————— I AM ADDING TO THIS AS I GO ALONG
====================================== [1] – 6/5/2013 – ” … in January the Burzynski Clinic removed all references to antineoplaston therapy on its website … “
—————————————————————— [2] – 8/4/2013 – I proved Gorski wrong since Burzynski’s scientific publications regarding antineoplaston therapy are on the Burzynski website
====================================== [1] – 6/5/2013 – “Three years should be plenty of time to line up clinical sites for a phase III trial”
“Of course, given that after three years the clinical trial hasn’t been opened, more than likely no reputable institution wants to partner with the Burzynski Research Institute, and ResearchPoint collected its checks”
—————————————————————— [3] – 7/18/2013 – This statement by Gorski is disingenuous since 6/3/2013 he reviewed Burzynski: Cancer Is Serious Business, Part II where this issue was addressed, and he made NO COMMENT about it in his review
Gorski can distort, exaggerate, and even lie to the public
====================================== [1] – 6/5/2013 – “Another interesting tidbit in the SEC filing is Burzynski’s report of the results of several of his clinical trials”
“They aren’t really “results’ per se, in that the information presented really isn’t provided in a form that really allows other investigators to evaluate it and potentially replicate it”
“Basically it’s a big table listing Burzynski Research Institute clinical trials”
“Of course, I realize that this is an SEC filing, not a scientific paper in the peer-reviewed literature, but if Burzynski has all this data to produce this table it boggles the mind that, given at least a decade and a half since these trials began, he hasn’t been able to publish any meaningful data thus far”
“That he hasn’t been able to do so is also a big red flag”
—————————————————————— [5] – 8/21/2013 – That Gorski has NOT been able to prove that the 4 Burzynski publications I refer to are NOT “meaningful data” is a big red flag
====================================== [6] – 6/4/2013 – “It’s a theme that is repeated throughout the report but that ignores the astounding level of sheer deception that goes on at the Burzynski Clinic, the allegations of overfilling, and how Burzynski has abused the clinical trial process to keep treating patients with antineoplastons without actually having to do the science that any other doctor would be required to do to validate a new treatment”
—————————————————————— [7] – 6/23/2013 – This is the 1st time I’ve seen Gorski allege “overfilling,” and I sure have NOT seen him provide any proof of that or that Burzynski is NOT doing “the science that any other doctor would be required to do to validate a new treatment”
If anyone is being “deceptive,” it seems to be Gorski
====================================== [6] – 6/4/2013 – Dr. Elloise Garside, a research scientists, echoes a lot of the questions I have, such as how Burzynski never explains which genes are targeted by antineoplastons, … “
—————————————————————— [8] – 8/7/2013 – Gorski has NO response for where I list where Burzynski “explains which genes are targeted by antineoplastons”
====================================== [6] – 6/4/2013 – ” … what the preclinical evidence supporting their efficacy are … “
—————————————————————— [9] – 3/16/2013 – Gorski does NOT mention where he’s reviewed “the preclinical evidence supporting their efficacy”
====================================== [6] – 6/4/2013 – ” … or what the scientific rationale is to expect that they might have antitumor activity”
—————————————————————— [10] – 8/8/2013 – Gorski reviewed “Burzynski: Cancer Is Serious Business” (Part I), but acts as if Dvorit D. Samid was NOT mentioned, and that he is NOT aware that the BurzynskiMovie website contains supporting documentation
I can’t let such statements go unchallenged
It means NadaZeroZip
====================================== [6] – 6/4/2013 – “In science, all that matters is what you publish, and Burzynski hasn’t published anything other than case reports, tiny case series, and unconvincing studies, mostly (at least over the last decade or so) in crappy journals not even indexed on PubMed”
—————————————————————— [5] – 8/21/2013 – I remain unimpressed that Gorski has NOT written a review of Burzynski’s 2003-2010 phase II clinical trial preliminary reports
====================================== [6] – 6/4/2013 – “Without a doubt, the most effective part of the story is the segment in which Dr. Jeanine Graf of the Texas Children’s Hospital is introduced”
“Dr. Graf is the director of the pediatric intensive care unit there and has taken care of lots of Burzynski patients, as her hospital is “just down the road” from the Burzynski Clinic and these unfortunate children are brought to her hospital when they decompensate”
“Indeed, coupled with this segment is an interlude where Luna Petagine’s mother complains that the staff there know and recognize Burzynski patients (and, she notes, hate the Burzynski Clinic)”
“Particularly damning is how Ms. Petagine said that the Texas Children’s Hospital Staff “were always cleaning up Burzynski’s messes.””
“Luna was brought to the Texas Children’s Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before”
“It was also clear how much contempt the staff there had for the Burzynski Clinic”
“If there’s one thing Panorama did right in this report, it’s showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that”
“Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she’s never seen a Burzynski patient survive”
“True, she does point out that patients don’t come to her until they are in extremis, but the fact remains that she’s never seen any of them live”
—————————————————————— [11] – 4/24/2013 – What is so ridiculous about this is that Richard Bilton wanted numbers from Burzynski, but then when it came to this part of the documentary, he somehow forgets how to ask how many patients this applies to, and Gorski compounds this by trying to blame hypernatremia on antineoplaston therapy, but he refuses to explain how it is that in this Division of Internal Medicine / Department of General Internal Medicine, University of Texas, MD Anderson Cancer Center, Houston, TX, USA, cancer study, over a 3 month period in 2006 re 3,446 patients, most of the HYPERNATREMIA (90 %) was acquired during hospital stay, and these patients were NOT on antineoplaston therapy
Arrogance, dismissiveness, and condescension make him his own worst enemy
====================================== [6] – 6/4/2013 – “Burzynski also pulls out the old trope that, if the FDA has been letting him use antineoplastons for 20 years in clinical trials if they weren’t safe and potentially effective, that the FDA wouldn’t let him “sell hope without evidence.””
“(Those of us following Burzynski for a while know, unfortunately, that that isn’t necessarily true.)”
—————————————————————— [12] – 4/25/2013 – “The FDA’s Drug Review Process: Ensuring Drugs Are Safe and Effective” advises:
“[T]he emphasis in Phase 2 is on EFFECTIVENESS”
“Phase 3 studies begin if EVIDENCE of EFFECTIVENESS is shown in Phase 2″
The FDA has approved Burzynski’s phase 3 clinical trials, which means that antineoplastons have shown evidence of effectiveness, whether Gorski likes it or NOT
====================================== [6] – 6/4/2013 – ” … he goes on to repeat the same refrain he’s been repeating for the last decade or so about how he’s on the verge of publishing all the results that will convince everyone”
“One notes that we’re still waiting”
—————————————————————— [13] – 7/25/2013 – Gorski provides NO citation to support his statement, and, he did a review of “Burzynski: Cancer Is Serious Business, Part II,” but conveniently does NOT comment in his review about the refusal e-mail shown in the film, and its suspect content
====================================== [6] – 6/4/2013 – “Burzynski needs to publish, but I highly doubt that he will, at least not in a form that is informative to real oncologists”
—————————————————————— [5] – 8/21/2013 – I’m waiting for Gorski to prove that the 4 Burzynski publications I refer to are “NOT in a form that is informative to real oncologists”
Why don’t YOU cite a phase 2 clinical trial final publication that has substantially more data fields than the 4 publications I mention ?
====================================== [4] – 6/3/2013 – “I refer you to the link for my discussion of many of the problems with the movie”
“Here I will concentrate mainly on issues that I haven’t discussed before, because actually seeing Burzynski II was a revelation”
“(Yes, I put that sentence there on purpose, Eric Merola; quote mine it if you have the cojones)”
—————————————————————— [3] – 7/18/2013 – Gorski, don’t wait for Eric Merola to quote you
I’ve quoted you
Now let’s see if YOU have the cajones
MY review of your “review” should be a revelation to YOU
====================================== [4] – 6/3/2013 – “I’m referring to Chris Onuekwusi, a man who was diagnosed with stage I colon cancer”
“Instead of undergoing straightforward surgery that we know to have a high probability of success (which, I’ll also point out, can be done these days through minimally invasive laparoscopic techniques), Onuekwusi balked, as described in more detail than in the movie in this article on the Burzynski Patient Group website”
“He had even gone for a second opinion at one of the leading cancer centers in the world, the University of Texas M.D. Anderson Cancer Center, where the surgeon told him the same thing”
“He needed surgery first”
—————————————————————— [3] – 7/18/2013 – Mr. Onuekwusi did NOT want surgery
====================================== [4] – 6/3/2013 – “So what did Burzynski recommend instead of surgery?”
“He recommended a cocktail of three drugs given off-label:”
“Zolinza, Xeloda, and Avastin”
“Zolinza is vorinostat, a histone deacetylase inhibitor; Xeloda is capecitabine, which is a prodrug for 5-fluorouracil (5-FU), a pyrimidine analog that inhibits the enzyme thymidylate synthetase and thereby inhibits DNA synthesis to toxic effect in rapidly dividing cells; and Avastin is bevacizumab, a humanized monoclonal antibody directed against vascular endothelial growth factor-A (VEGF-A)”
“As I described in a previous post about Burzynski’s “personalized, gene-targeted cancer therapy,” apparently Burzynski sent Onuekwusi’s tumor to Caris for testing”
====================================== [14] – 3/2010 – Burzynski advised that a blood or pathology specimen can be used for testing, and that results from a blood test can be obtained within 2 days, and used and refined by a pathology specimen within 2 to 3 weeks
====================================== [4] – 6/3/2013 – “Caris generated a report, as it always does, and Burzynski came up with a witches’ brew of new expensive targeted agents, all said to be “off-label.””
====================================== [15] – 5/17/2011 – Well, not exactly
Burzynski made it clear in part 2 of this interview that there is constant searches of medical literature (phase 2 and phase 3 publications) to research the medications to be used based on the cancer genes involved, and that they have worked on software so oncologists can use it to choose the best medications instead of reinventing the wheel and having to review the medical literature again
So, he does NOT come up with a “witches’ brew”
====================================== [4] – 6/3/2013 – “One of these drugs is just an old chemotherapy drug in a new form”
“Xeloda is, in essence, 5-FU, a chemotherapeutic drug that has been used to treat colorectal cancer, both as adjuvant chemotherapy and first-line therapy for metastatic disease, for over 40 years”
“There’s nothing really “targeted” about the drug except that it inhibits an enzyme, the way that many drugs do and have been known to do for decades”
“The advantage of Xeloda is that it can be administered orally, which is a good thing”
====================================== [16] – What Gorski fails to mention is that Xeloda (Capecitabine) is approved to be used alone or with other drugs to treat:
Stage III colon cancer in patients who have had surgery to remove cancer
May also apply to unapproved uses being studied
—————————————————————— [17] – fluoropyrimidine carbamate belonging to class of antineoplastic agents called antimetabolites
As prodrug, capecitabine is selectively activated by tumor cells to cytotoxic moiety, 5-fluorouracil (5-FU); subsequently, 5-FU is metabolized to 2 active metabolites, 5-fluoro-2-deoxyuridine monophosphate (FdUMP) and 5-fluorouridine triphosphate (FUTP) by tumor cells and normal cells
FdUMP inhibits DNA synthesis and cell division by reducing normal thymidine production, while FUTP inhibits RNA and protein synthesis by competing with uridine triphosphate for incorporation into RNA strand
====================================== [4] – 6/3/2013 – “Similarly, Avastin, although relatively new, is also commonly used for colorectal cancer, albeit usually for metastatic disease and not as adjuvant chemotherapy”
====================================== [18] – What Gorski fails to mention is that Avastin (Bevacizumab) is approved to be used alone or with other drugs to treat:
Colorectal cancer that has metastasized (spread to other parts of body)
May also apply to unapproved uses being studied
—————————————————————— [19] – A recombinant humanized monoclonal antibody directed against the vascular endothelial growth factor (VEGF), a pro-angiogenic cytokine
Bevacizumab binds to VEGF and inhibits VEGF receptor binding, thereby preventing the growth and maintenance of tumor blood vessels
====================================== [4] – 6/3/2013 – “That leaves Zolinza, which is an HDAC inhibitor used to treat cutaneous T cell lymphoma”
====================================== [20] – What Gorski fails to mention is that Zolinza (Vorinostat) is a histone deacetylase inhibitor, approved for treatment of cutaneous manifestations of cutaneous T-cell lymphoma (CTCL) in patients with progressive, persistent, or recurrent disease
May also apply to unapproved uses being studied
—————————————————————— [21] – A synthetic hydroxamic acid derivative with antineoplastic activity
Vorinostat, a 2nd generation polar-planar compound, binds to catalytic domain of histone deacetylases (HDACs)
Allows hydroxamic moiety to chelate zinc ion located in catalytic pockets of HDAC, thereby inhibiting deacetylation and leading to accumulation of both hyperacetylated histones and transcription factors
Hyperacetylation of histone proteins results in upregulation of cyclin-dependant kinase p21, followed by G1 arrest
Hyperacetylation of non-histone proteins such as tumor suppressor p53, alpha tubulin, and heat-shock protein 90 produces additional anti-proliferative effects
Agent induces apoptosis and sensitizes tumor cells to cell death processes
Vorinostat crosses blood-brain barrier
====================================== [4] – 6/3/2013 – “One wonders if Burzynski included a second HDAC inhibitor, his second favorite drug after antineoplastons, sodium phenylbutyrate”
====================================== [22] – 11/19/2012 – Gorski, if you had done “exhaustive research” on Burzynski and “Gene-Targeted Cancer Therapy,” you would have viewed this @youtube video:
Texas Med. Bd. v. Dr. Burzynski – Gene-Targeted Cancer Therapy – Case Dismissed 11/19/2012
BurzynskiMovie
and you would have heard Mr. Onuekwusi say at 3:45, that he took phenylbutyrate (PB)
====================================== [4] – 6/3/2013 – “So, by Merola’s own description, what Burzynski did was to administer a toxic form of treatment that was probably not needed (chemotherapy) using drugs that were not approved for that indication, and apparently didn’t insist that the patient needed surgery”
====================================== [23] – 12/13/2012 – Gorski publishes so much garbage that he may have forgotten his article where he posted:
“Then, there is also this video, produced by the Burzynski clinic itself:”
“At around the three minute mark, the announcer states:”
“We combine gene-targeting drugs and low dose chemo, if needed”
====================================== [4] – 6/3/2013 – “Now, it’s possible that the combination of drugs did eliminate the tumor”
====================================== Gorski, do you think that’s because as mentioned in [15], above, Burzynski would review publications like this ?
[24] – 8/23/2011 – A randomized, phase III trial of capecitabine [Xeloda] plus bevacizumab [Avastin] (Cape-Bev) versus capecitabine plus irinotecan plus bevacizumab (CAPIRI-Bev) in first-line treatment of metastatic colorectal cancer: the AIO KRK 0110 trial/ML22011 trial [1st-line treatment of patients with unresectable metastatic colorectal cancer (mCRC)]
—————————————————————— [25] – 11/2/2010 – Vorinostat [Zolinza] synergises with capecitabine [Xeloda] through upregulation of thymidine phosphorylase
—————————————————————— [26] – 4/2012 – Phase I–II study of vorinostat [Zolinza] plus paclitaxel and bevacizumab [Avastin] in metastatic breast cancer: evidence for vorinostat-induced tubulin acetylation and Hsp90 inhibition in vivo
—————————————————————— [4] – 6/3/2013 – “In my opinion, Burzynski deserves to have his medical license taken away on the basis of how he treated Chris Onuekwusi alone, not even considering all the other dubious things he’s done”
====================================== [27] – 8/27/2013 – In my opinion, Gorski deserves to have his medical license taken away on the basis of how he has misinformed, disinformed, and lied about Burzynski, not even considering all the other dubious things he’s done
====================================== [4] – 6/3/2013 – “All I can say is that Merola and Burzynski must not have searched very hard, because I quickly found a few … “
“Truly, Merola’s “exhaustive” research skills need some upgrading”
“It took me two minutes to find those articles”
====================================== [22] – 11/19/2012 – All I can say is that Gorski must NOT have searched very hard, because I quickly found this @youtube video about Dr. Burzynski – Gene-Targeted Cancer Therapy, which includes a segment on Burzynski’s cancer gene testing at 2:45
Truly, Gorski’s “exhaustive” research skills need some upgrading, since nowhere does it indicate that Burzynski was involved with doing Merola’s research
It took me 2 minutes to find this out
Seeing is believing?
To me seeing is knowing just how intellectually dishonest David Gorski is
====================================== [4] – 6/3/2013 – Seeing The Skeptics
“Particularly seemingly damning are a series of Tweets flashed on the screen saying things like the Hope for Laura fund (the fund set up by Laura Hymas to pay for her treatment at the Burzynski Clinic) “appears to be just a money laundry for a lying quack fraud” and “when Laura dies #Burzynski will just move on to his next mark if she doesn’t run out of money first.””
“I think I know whose Tweets these were”
“In fact, I’m sure I know whose Tweets these were, and all I can say to that person is this:”
“Zip it”
“Stop it”
“Put a sock in it”
“In fact, if I’m correct about whose Tweets these are I think I have already done so on Twitter when I’ve seen this person getting too close to attacking cancer patients”
“Still, as utterly insensitive and “dickish” as those Tweets were, they do not represent the majority of skeptics, but rather a few jerks”
“However, we as skeptics need to remember that a few jerks perceived (or painted) as attacking cancer patients can do immeasurable damage to the cause of science-based medicine”
“So if you’re one of those skeptics making comments like that, knock it off”
“If I see you doing it again, next time I will call you out publicly”
====================================== [28] – 2/19/2013 – Like this ?
——————————————————————
Of course it's always possible that the money launderers are appearing as themselves in the #Burzynski advertisement.
——————————————————————
And this ?
——————————————————————
BurzynskiSaves (@BurzynskiSaves) tweeted at 7:42pm – 25 Dec 11:
“@RatbagsDotCom:They will be even more vulnerable when Laura dies and #Burzynski forgets her and moves on to the next mark” #unconscionable https://twitter.com/BurzynskiSaves/status/151115741888909312
—————————————————————— [29] – 8/1/2013 – And like you called this guy out ?
——————————————————————
David James (@StortSkeptic) tweeted at 7:08pm – 1 Aug 13:
The new Doctor Who will be Stanislaw #Burzynski. He manages to continually avoid getting cornered and he gets away with murder.
The new Doctor Who will be Stanislaw #Burzynski. He manages to continually avoid getting cornered and he gets away with murder.
====================================== [4] – 6/3/2013 – “Then, there was the kicker”
“Eric Merola and Laura Hymas’ fiancé Ben Hymas called me a liar”
“Ben Hymas is quite mistaken in saying about me,”
““He’s lying to them.””
“Moreover, if I had screwed up, I would have admitted it”
“Indeed, part of the reason I looked into this so closely was because I wondered if somehow Merola had actually found a mistake I had made”
“You know the saying about the proverbial blind squirrel occasionally managing to find a nut?”
“It’s possible, albeit unlikely, and in fact there was no mistake”
“There is nothing in deceptive to change my assessment of what happened in the case of or my opinion of Eric Merola”
====================================== [3] – 7/18/2013 – As I said before, Gorski’s research skills leave much to be desired
Gorski is a hack and is only funny by accident because he has no filters
If anything, having seen his “review” of Burzynski II, my opinion of Gorski has plummeted even further, something I had thought possible
Gorski, so you got lucky like a blind squirrel and found an error
However, this does NOT change the fact that you’ve been proven to be a liar
Do you want me to subtract one of your lies from the tally ?
====================================== [30] – 5/9/2013 – “On what basis is he “targeting” his therapy?”
“As I’ve recounted before, Burzynski usually sends off blood and tissue samples to Caris for testing”
“The Caris Target Now™ test, which since my discussion of Burzynski’s “personalized therapy” appears to have been renamed Caris Molecular Intelligence and is now available at more levels of service (although its reports look much the same to me), is nothing unique to the Burzynski Clinic”
“Anyone who is willing to pay for it can have it, and the report will be the same”
“In any event, there is as yet no convincing evidence that the Caris tests (or any of the other competing tests) result in better outcomes”
====================================== [31] – 5/28/2013 – A key pillar of Gorski’s position on Burzynski’s “personalized gene-targeted cancer therapy” is that he alleges that he is “someone relatively knowledgeable about the state of personalized cancer therapy”
I can’t help but wonder why it is that he did NOT know the above information
Maybe he isn’t as knowledgeable about personalized cancer therapy and targeted therapies as he claims
(Oh, wait. He isn’t!)
That’s why when he wrote his “review” on Sheila Herron, he did NOT even refer to Burzynski’s publication:
—————————————————————— [32] – 8/2011 – Successful Treatment of Recurrent Triple-Negative Breast Cancer with Combination of Targeted Therapies
When it comes to Gorski’s “story writing” pal Robert J. “Bob” Blaskiewicz, I might allow for some leeway since he’s only a “Perfessor,” but with Gorski on the other hand, I’m not nearly so benevolent
In my ever-Insolent opinion, he and his propagandist are cynically using patients like human shields to deflect criticism
Activities I cannot countenance
====================================== [33] – 4/19/2013 – “I now think I probably know with around 95% certainty) and Didymus Judas Thomas (whose identity I’m probably about 75% sure of … also obsessively read anything posted about Eric Merola or Stanislaw Burzynski on any social media”
====================================== [34] – 4/19/2013 – Gorski has had over 4 months to say who he thinks I supposedly am, and so far he’s been a failure
But then again, as could be expected, he was wrong about his 2nd theory as well
Finally, I believe that people like Gorski are hypocrites, feeling free to paint Burzynski to their heart’s content (from what I’ve read about Burzynski on blogs, Twitterarticles, and elsewhere, posted by biased, disingenuous, “holier than thou” Skeptics, in them Burzynski is all but portrayed as Satan Incarnate) but running like whipped puppies to the Coward section when either they or Gorski are criticized, no matter how civil, reasonable, or science-based that criticism is (and my blog is all of the above)
The reason is, of course, clear
Having no convincing science, no convincing medicine, and no convincing evidence to support their hero’s antineoplastons hackery or “personalized MUD-targeted therapy for dummies,” they resort to Twitter thuggery
Same as it ever was
One more thing:
If Gorski and his crew of sycophants, toadies, and lackeys are offended by my opinion, my characterization of them that I have based on analyses of claims and observation of the behavior of them and their propagandist, they should try something different to shut me up
I have just the thing, too
Publishing the results of some of the responses to my blog for the scientific community comes to mind first
If Gorski really has the goods, as he and “The Skeptics” claim, then he can best shut me up by bringing the science—solid, convincing science, that is
I’ve said it before many times, and I’ll say it again:
I can be convinced by strong truthful and factual evidence
I have yet to see anything resembling strong evidence from Gorski
At least, if he has such evidence he hasn’t published it yet, preferring to publish a mixture of whiny blog articles where he takes a swipe at Burzynski, tiny-mind series, unimpressive basic science, and the like in bottom-feeding blog articles, some of which aren’t even indexed in PubMed
Nor is a conspiracy of cowardice—excuse me, “The Skeptics”—the reason why trying to ignore criticism will boomerang on “The Skeptics”
It’s all because of their own behavior and willingness to distort, misinform, and slime Burzynski
====================================== [35] – 1/14/2013 – “As you might recall, antineoplastons are chemicals that Burzynski found in the urine of cancer patients and that (or so he claims)”
====================================== [36] – 2/19/2013 – Seriously, Gorski ?
Where did you come up with that ?
After comparing the blood of healthy people to the blood of people with cancer, Dr. Burzynski found that people with cancer have lower amounts of a certain group of chemicals
====================================== [35] – 1/14/2013 – “None of this would have been too bad if only he had actually bothered to do the proper science and clinical trials to demonstrate that antineoplastons (1) have significant anti-cancer activity and (2) have acceptable levels of toxicity”
====================================== [10] – 8/8/2013 – Here’s (1)
—————————————————————— [37] – 2/19/2013 – And (2)
====================================== [35] – 1/14/2013 – “Oh, sure, he has a bunch of clinical trials listed on ClinicalTrials.gov, but virtually all of them are listed as having “unknown” status, and it’s unclear whether most, if any, of them are actually accruing”
====================================== [38] – 5/21/2011 – Cancer Breakthrough: 50-60% Success Rate, Cures the Incurable
May 21, 2011
12 phase 2 clinical trials have been successfully completed under supervision of FDA, and now conducting 3 phase 3 clinical trials
Or I can cite from Burzynski’s Securities and Exchange Commission (SEC) filings re his phase 2 clinical trials like you did [1] – 6/5/2013
====================================== [35] – 1/14/2013 – “In any case, Merola named the sequel what he named it … along with a website full of a “sourced transcript” to be used by Burzynski minions and shills everywhere to attack any skeptic who dares to speak out”
====================================== [39] – Gorski, you should have used the “sourced transcript” so you didn’t end up embarrassing yourself as much as you have
Actually, no one who is an apologist for Dr. Gorski, a.k.a. “Orac,” who over years ago unleashed MUD-targeted therapy on unsuspecting cancer patients, much likes Burzynski
It’s not surprising
Basically, Gorski’s a hack
—————————————————————— [40] – Or, you can use this – Burzynski: The Movie — Illustrated Screenplay and Screencap Gallery (Nader Library):
====================================== [35] – 1/14/2013 – “Part of the reason that Eric Merola doesn’t like me, aside from the fact that I am willing to help publicize Bob Blaskiewicz’s present to Dr. Burzynski for his 70th birthday on January 23, is that I think that every so often I happen to run into stories about the bad science and unethical nature of Burzynski’s work, and I blog about it”
====================================== [41] – 3/26/2013 – Maybe Eric does NOT like you because part of that “present” was your “pal” saying:
“The Burzynski clinic is a place you go to die”
—————————————————————— [42] – 8/24/2013 – Gorski, where were you when these 374 children died of brain cancer in #ScienceBasedMedicine clinical trials ?
====================================== [35] – 1/14/2013 – “I also run into patient stories”
“Although I don’t cover them as systematically as Bob does, I like to think that what I lack in comprehensiveness of coverage I make up for with my in-depth knowledge of cancer science and treatment”
====================================== [43] – 8/31/2013 – Your “in-depth knowledge of cancer science and treatment” ?
You sure have NOT presented a very strong case for that
Is your “man-crush”, Robert J. “Bob” Blaskiewicz still adding false statements to his “stories” ?
====================================== [35] – 1/14/2013 – “There are a number of things about this documentary that one can learn if one is involved in caner care and knowledgeable about Stanislaw Burzynski”
“Indeed, he’s even taken credit for pioneering the concept of personalized cancer therapy based on genes and the concept that cancer is a genetic disease, claiming to have published a journal article about it 20 years ago, allegedly long before conventional scientists and oncologists even thought of it”
“The problem, of course, is that, as far as I can tell, he published no such paper and personalized therapy is a concept older than 20 years”
====================================== [44] – 7/26/2013 – Indeed, from my perspective Gorski’s an egomaniac, full of the arrogance of ignorance about things like Burzynski’s “personalized cancer therapy”, prone to contemptuously dismissing anyone who has the temerity to question the Great and Powerful “Orac” is god
Because I was able to find the publication with NO problem
“Orac’s” Oracolytes remind me of the “believer” who said:
“god said it, and I believe it, so that settles it”
Of course, “Orac” is Oz tends to clam up when questioned by people who are NOT likely to be sycophants, toadies, and lackeys
====================================== [35] – 1/14/2013 – “Given that these are all phase II studies, it’s hard to believe that the FDA would allow Burzynski to keep them open over 13 years, but apparently it has”
====================================== [45] – 7/26/2013 – Gorski, why don’t you ask the FDA?
3/29/1996 Then United States Food and Drug Administration Commissioner, David Kessler told the American people:
“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”
—————————————————————— [46] – 6/7/2013 – Then you could be like Blatherskitewicz and do this:
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.
rjblaskiewicz: @bbc5live “I believe he said
“Put up or shut up
you little bitch”
BB: why not check with the @US_FDA
#Burzynski
BBC Panorama
====================================== [35] – 1/14/2013 – “Finally, why doesn’t Burzynski offer Seán his “personalized gene-targeted cancer therapy.””
“It probably wouldn’t be that big a deal to get the blocks of tissue from Seán’s biopsy and have them analyzed”
“Yes, inquiring minds do want to know”
====================================== [35] – 1/14/2013 – Gorski, why don’t you cite the applicable phase 2 and / or phase 3 clinical trial publications of FDA approved drugs for “inoperable brainstem glioma” ?
And while your at it, is the “girl from England” referred to in your article, the same one that is referred to in Burzynski 2 ?
====================================== [47] – 1/7/2013 – “That’s why I’m joining P.Z. Myers in asking you to help make Stanislaw Burzynski pay cold hard cash to a worthy cause
====================================== [41] – 3/26/2013 – Yes Gorski, your “pal” E.Z. P.Z. who wrote:
“The Burzynski clinic is a place you go to die”
He has no shame
But at least ya’ll raised money for a worthy cause while at the same time bringing attention to yourself and what I consider to be your incredibly unethical behavior
====================================== [23] – 12/13/2012 – “In fact, from my perspective, it appears to me as though over the last few years Dr. Burzynski has pivoted”
“No longer are antineoplastons the center of attention at his clinic”
“Rather, these days, he appears to be selling something that he calls “personalized gene-targeted cancer therapy.””
====================================== [48] – 4/26/2013 – Gorski it’s great to see you’ve been paying attention
” … 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”
====================================== [23] – 12/13/2012 – “Finally, around the 4:30 mark, we see Dr. Gregory Burzynski, Dr. Burzynski’s son, talking about genomic profiling of cancers and biomarkers in the blood and in circulating tumor cells. … plus a claim that surgery will no longer be necessary for surgery, what’s left over doesn’t sound too different from what quite a few “conventional” cancer researchers say about “personalized medicine.””
====================================== [23] – 12/13/2012 – Gorski, “surgery will no longer be necessary for surgery” ?
Is this “attention to detail”” related to:
“because of the positions I hold at an NCI-designated comprehensive cancer center” ?
====================================== [23] – 12/13/2012 – “Clearly, the producer went to great lengths to make Burzynski’s lab look like any other molecular and cell biology lab–even like my lab”
====================================== [23] – 12/13/2012 – Gorski, are you trying to suggest that the producer rented or bought equipment to produce this look ?
Do you know how ridiculous that sounds ?
====================================== [23] – 12/13/2012 – “When we do this we have a very good chance to have positive results in most patients”
“SS: How many respond?”
“SB: About 85 per cent for whom we have the proper gene signature; about 15 percent do not respond”
“In our responders many of them have tumors which disappear completely and in others the tumors remain small”
“The problem is finding the genetic signature because for many of these different genetic signatures we don’t have blood tests…yet”
“Note that at the time this book was published, Dr. Burzynski was claiming that he could identify who would benefit from specific targeted therapies simply from blood tests”
“If he could do this for real, Burzynski could easily publish in high impact journals like Clinical Cancer Research, the Journal of Clinical Oncology, or another high impact clinical cancer journal”
“Heck, a result like that could probably make it into general medical journals, such as the New England Journal of Medicine or The Lancet, which have an even higher impact factor”
“If he were able to demonstrate that his method of testing tumors and picking targeted therapy could result in a complete response rate anywhere near 85% for breast cancer, even more so”
“If, as he claims later in the chapter, Dr. Burzynski has patients with pancreatic cancer and advanced liver cancer whose tumors have disappeared within two months after he began treatment, the same would be true”
“If, as Burzynski claims, he achieves a 50% complete response rate in advanced brain tumors, again, the same would be true”
“He doesn’t submit his results to these journals”
“Why not?”
====================================== [3] – 7/18/2013 – Gorski, why would Burzynski want to publish in The Lancet when you saw the lame excuse they gave in Burzynski 2 for NOT publishing Burzynski’s results; which YOU have refused to address ?
Maybe you could find out if you visited the Burzynski Clinic
Oh, wait
You’ve said that people do NOT need to go to the Clinic to learn things
====================================== [23] – 12/13/2012 – “Gene-targeted cancer therapy is currently in its infancy and, except in rare situations outside of the existing currently validated biomarkers (such as HER2, ER, c-kit, and other genes for which targeted therapies exist) for the response of specific cancers, is not to be undertaken outside of the context of a clinical trial“
====================================== [23] – 12/13/2012 – Gorski, that’s all well and good for you to write, but you provide NO citation, reference, or link in support of your statement, and you’ve proven that what you post can NOT be trusted
Try again
====================================== [23] – 12/13/2012 – “Before discussing how the Burzynski Clinic does personalized cancer therapy, I think it’s worth looking at how real scientists do it right now”
====================================== [23] – 12/13/2012 – Gorski, what are you implying ?
That Burzynski is NOT a “real scientist” ?
Because you stated:
“From the description above, it sounded very much to me as though Dr. Burzynski is combining various targeted agents with metronomic chemotherapy“
“I know a thing or two about metronomic chemotherapy, because I was involved in a project whose end result was to be the testing of metronomic chemotherapy against cancer and because the concept is a spinoff of the work of one of my scientific heros, the late Judah Folkman”
“Whether this is what Dr. Burzynski is doing or not with the chemotherapy part of his approach, I don’t know for sure, but it sure sounds like it“
====================================== [23] – 12/13/2012 – “Now let’s take a look at how the Burzynski Clinic does it, at least as far as I can figure out from my various sources and from Ms. Trimble”
“In response to my query about personalized gene-targeted therapy offered by the Burzynski Clinic, Ms. Trimble stated that a gene expression analysis is performed, as well as mutational analysis, FISH, immunohistochemistry for selected genes and that a blood test is also performed to measure the “concentration of proteins which are products of most important oncogenes.””
“In addition, drugs are supposedly selected based on the patient’s clinical information, standard of care, FDA indication, data from phase II and III clinical trials“
====================================== [4] – 6/3/2013 – Gee Gorski
In your 6/3/2013 article you act as if you did NOT know this
====================================== [23] – 12/13/2012 – “To support this claim, Ms. Trimble also sent me two papers from the Burzynski Clinic, both of which appeared in a journal I had never heard of before, the Journal of Cancer Therapy, which is clearly not indexed on PubMed because these papers never showed up when I searched PubMed for Burzynski”
“One described Burzynski’s approach for triple negative breast cancer (TNBC)”
====================================== [32] – 8/2011 – Gorski, why am I NOT surprised that you’re able to refer to this TNBC publication 12/13/2012, but when reviewing Sheila Herron’s TNBC case 5/28/2013, you completely ignored this publication, even though it specifically states:
“Here we report the successful treatment of metastatic TNBC with combination targeted therapy, and we discuss MDT for a group of 16 women including this patient, whose treatment was based on the same principle” (Pgs. 372-373)
How do you NOT provide a link to a previous article you wrote on the same subject, like you normally do ?
====================================== [23] – 12/13/2012 – “It turns out that perhaps the best description of what “personalized” treatment means in Dr. Burzynski’s hands comes from the Texas Medical Board’s complaint against him, which can be found in over at the Ministry of Truth or at Casewatch”
“This complaint is based on the cases of two patients”
“First, here’s Patient A, who is described in the complaint thusly:”
“1. Patient A:”
“a. In approximately May of 2008, Patient A presented to Respondent with breast cancer that had metastasized to her brain, lung, and liver”
“b. Respondent prescribed a combination of five immunotherapy agents – phenylbutyrate, erlotinib, dasatinib, vorinostat, and sorafenib-which are not approved by the Food and Drug Administration (“FDA”) for the treatment of breast cancer, and which do not meet the FDA’s regulations for the use of off-label drugs in breast cancer therapy”
“c. In combination with the five immunotherapy agents, Patient A was prescribed capecitabine, a chemotherapy agent”
“This is what’s known as “throwing everything but the kitchen sink” at the tumor without any thought of interactions, as most of these agents have no proven role in the treatment of breast cancer”
“For example, erlotinib (brand name: Tarceva) is used to treat pancreatic cancer and non-small cell lung cancer”
“It works by inhibiting the tyrosine kinase of the epidermal growth factor receptor (EGFR) and is not FDA-approved for breast cancer”
“However, it’s not unreasonable to think that it could work in breast cancer, as EGFR is believed to be important in some breast cancers, which is why this is an area of active research”
“Dasatinib (trade name: Sprycel) is also a kinase inhibitor”
“It inhibits the Src family tyrosine kinase”
“Vorinostat is a histone deacetylase inhibitor approved for use against cutaneous T-cell lymphoma”
“Finally, Sorafenib is another tyrosine kinase inhibitor that inhibits the tyrosine kinases of different receptors, as well as raf kinases”
“The big problem with this sort of approach is that the more drugs you add, no matter how “targeted” they are, the more chance for interactions that increase toxicity, and throwing all these kinase inhibitors together in a cocktail with chemotherapy is a recipe for disaster, particularly because such cocktails haven’t been tested in proper phase I clinical trials to evaluate toxicity”
====================================== Gorski, you make it sound like you reviewed the medical literature and found NO phase I clinical trials were conducted, or NO combinations of some of these drugs were tested
But you do NOT reveal your research
I’m guessing you reviewed these pre 5/2008 publications, right ?
—————————————————————— [49] – 4/20/2007 – Phase III study:erlotinib in combination with cisplatin and gemcitabine in advanced non-small-cell lung cancer
—————————————————————— [50] – 5/2007 – randomized phase II study: sorafenib/erlotinib – advanced non-small-cell lung cancer
—————————————————————— [51] – 4/20/2006 – Phase II study: capecitabine and erlotinib
—————————————————————— [52] – 1/2008 – Phase II Clinical Trial: Sorafenib
—————————————————————— [53] – 4/2007 – Antitumor Activity: Sorafenib – 4 Phase I Trials: Advanced Refractory Solid Tumors
—————————————————————— [54] – 6/20/2007 – phase I study: vorinostat (VOR) in combination with capecitabine (CAP) – advanced solid tumors
====================================== [23] – 12/13/2012 – “In any case, as we have seen, Dr. Burzynski does give chemotherapy”
“Lots of chemotherapy”
====================================== [23] – 12/13/2012 – Gorski, what was the date of the video you quoted above, about low-dose chemotherapy ?
====================================== [23] – 12/13/2012 – “Instead, skirting the line between science and pseudoscience, Dr. Burzynski gives every appearance of recklessly throwing together untested combinations of targeted agents willy-nilly to see if any of them stick but without having a systematic plan to determine when or if he has successfully matched therapy to genetic abnormality”
====================================== [15] – 5/17/2011 – That sure explains away the review of the medical literature (phase 2 and 3 clinical trials)
NOT
====================================== [55] – 12/12/2012 – “Note: Orac is away In the meantime, he is rerunning some of his favorite posts”
“Given that the blog seems to have been infiltrated with Burzynski trolls again now seems a perfect time to rerun a post of Orac’s from about a year ago”
====================================== [55] – 12/12/2012 – “Orac”, who’s the idiot who posted that “trolls” had taken over the blog, and who were these “alleged”“trolls” ?
Inquiring minds want to know
====================================== [55] – 12/12/2012 – “No one would ever confuse my reviews with those of Roger Ebert (mine tend to be a lot longer, for one thing, and concentrate on science much more than moviemaking), but I do sometimes subject myself to these movies when I can find a way to watch them online that doesn’t cost me any money”
====================================== [55] – 12/12/2012 – Gorski
“Concentrate on science” ?
really ?
Really ??
REALLY ???
Did you actually count how many characters and / or words you devoted to criticism instead of “science” ?
====================================== [55] – 12/12/2012 – “In the process, I might even look into a couple of Burzynski’s studies that I’ve read and found to be–well–lacking, to put it kindly”
====================================== [2] – 8/4/2013 – Gorski, why don’t you “look into” Burzynski’s 2003-2010 preliminary phase 2 clinical trial reports, and write a “review” ?
====================================== [55] – 12/12/2012 – “One part of the movie that truly insults the intelligence of anyone with a modicum of knowledge about drug therapy occurs near the beginning of the movie”
“It’s a part that, as a cancer surgeon who is interested in targeted therapies for breast cancer, I found particularly idiotic”
“First, there is a screen with this caption:”
“Antineoplastons target the specific genes that allow cancer to grow and flourish”
“A little later we see:”
“There are currently over 25 FDA-approved gene-targeted cancer drugs on the market today”
“Many of them can only target single genes”
“All of which is true but irrelevant if Burzynski is trying to sell antineoplastons as targeted therapy”
“Now here’s the kicker:”
“Antineoplastons work on close to one hundred different genes”
“You know what you call a drug that works on “close to 100 genes”?”
“I don’t know either, but you don’t call it a “targeted” therapy unless all those genes are genes affected by the single target being inhibited; i.e., are downstream targets of the gene targeted by antineoplastons”
====================================== [5] – 8/21/2013 – Gorski, how do you NOT know “the single target being inhibited … are downstream targets of the gene targeted by antineoplastons”, when you did NOT even know which of Burzynski’s publications discussed which genes are “targeted by antineoplastons” ?
====================================== [56] – 12/5/2012 – “In reality, oncologists shun Burzynski—and rightly so, given that he has yet to publish anything resembling a convincing result suggesting the efficacy of his antineoplastons against cancer”
“It’s painfully obvious from this paragraph that Burzynski doesn’t know academic oncologists”
“The reason oncologists don’t respect Burzynski is because of how he hasn’t show that his treatments work better than conventional treatments—or even that they work at all—and because of the way he abuses patients by charging them huge sums of money to participate in a clinical trial”
“Those are the reasons legitimate oncologists, at least those familiar with Burzynski, look askance at him”
“How could they do otherwise?”
“The ones who don’t take him seriously are the ones who know him best”
====================================== [57] – 4/24/2013 – Gorski, that certainly explains why this 2011 cancer study that references Burzynski:
Phase II trial of tipifarnib and radiation in children with newly diagnosed diffuse intrinsic pontine gliomas
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
======================================
British Journal of Cancer (2010) 103, 1680–1691. doi:10.1038/sj.bjc.6605969
Published online 2 November 2010 http://www.nature.com/bjc/journal/v103/n11/full/6605969a.html
Experimental Pharmacology Unit, Department of Research, Istituto Nazionale Tumori, National Cancer Institute Fondazione G, Via.M Semmola, Pascale, Napoli, Italy
====================================== [26] – 4/2012
Phase I–II study of vorinostat plus paclitaxel and bevacizumab in metastatic breast cancer: evidence for vorinostat-induced tubulin acetylation and Hsp90 inhibition in vivo http://www.ncbi.nlm.nih.gov/pubmed/22200869/
Breast Cancer Res Treat. 2012 Apr;132(3):1063-72. doi: 10.1007/s10549-011-1928-x. Epub 2011 Dec 27 http://www.ncbi.nlm.nih.gov/m/pubmed/22200869/
Breast Cancer Res Treat. Author manuscript; available in PMC 2013 April.1 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3486521/
Published in final edited form as:
Breast Cancer Res Treat. 2012 April; 132(3): 1063–1072