The Old Lies are the Cruelest

I didn’t see the first episode of the BBC’s new documentary series on Great Ormond Street Hospital, but I did pick up the post show chatter on Twitter, from which I discovered that one of the patients featured in the show was shown receiving treatment from the Burzynski Clinic.

From Twitter I also picked up a link to this child’s fundraising website and found a diary section which gives quite a bit of information about the treatment they received from the clinic and the effect it had on them, all of which made for some very disturbing reading. I’m not going to link directly to the site or give the child’s name but I am going to repost a number of the diary entries that have been posted to the site, some of which have left me feeling both disgusted and angry.

To begin with, the child started on Burzynski’s antineoplaston treatment on 28 Sep 2011.

We finally started today. It didnt start great. We were told the MRI from yesterday showed growth on one third of all tumours. Feel sick as it’s only 24 days since her last scan, but we have to look forward and this is day 1 of kicking tumour butt!! We spent serveral hours being trained how to administer an emergency steroid into her line incase she has headaches or is sick caused by pressure in her brain as sometimes this medicine can cause that. All a bit scary but took it all in and we came home attached to our pump. [Name removed] isn’t bothered by any of it and I’m sure we’ll all adjust.

By day 3, it appears that the child was starting to experience side effects from the ‘treatment’.

[Name removed] has been really sad today. She is saying her eye is sore and has made it very red. She isn’t at all happy and I’m finding it very hard. The training is quite intense and has been particularly hard today as [Name removed] has needed all my attention and I haven’t been able to concentrate. She is going to the toilet every half and hour even through the night. It’s exhasting!

The training mentioned above is for the parents and covers the use of the equipment used to the deliver the ‘treatment’.

By day 6, the eye problem has worsened…

Today was really hard [Name removed] was not happy at all today. She has rubbed her eye so much it is now cut!!! She has been sad all day and again went to bed early. I am exhausted.

This, however, turns out to have been the least of her worries as three days later, this is posted to the diary…

Have not had the energy to even update this page over the last few days. [Name removed] has been really upset. The treatment is making her so thirsty it’s really hard to keep her hydrated. We had 2 very bad nights but last night was better. The clinic talked about discharge today in the next week! Seems weird to think about coming home.

And the next two days…

[1] Another bad day. [Name removed] is still so sad. It’s so hard getting her to take so much water without her being sick. Dr’s aren’t too helpful. Let’s hope for a better night.

[2] [Name removed] slpet well last night but we had the worst day ever. We called the out of hours Dr twice who suggested we take her to the emergency room. I tried some meds we brought with us and she eventually went to sleep. Praying tommorow is a calmer day!

So what we have is an eye problem and a problem with dehydration, both of which appear to be going largely untreated, at least until two days later…

[Name redacted] started on steroids today. She is better. Still hard work keeping her hydrated but better today. She hasn’t touched her eye all day! Clinic have told us we can be discharged on Wednesday but our Dr in the UK isn’t sure she can sign form to say she will keep an eye on her! We cannot return to the UK without that form signed arrrrrgh! Another hurdle.

At least that the eye problem getting some attention, but what about the dehydration? Well, the next three diary entries cover successive days, starting on October 11th…

[1] Today we look [Name redacted] to the emergency room. She has been so distressed all day it has been heart breaking. We have been here 5 hours and they have told us her potassium levels are so dangerously low she could go in to cardiac arrest. she is on lots of monitors and is still so distressed. They are giving her IV potassium and doing blood tests every few hours. Lets pray they sort her out i can’t stand seeing her so upset.

[2] We eventually got home at 2pm 17 hours later! Her potassium came up and she calmed down alot, until we got home then it all started again. The clinic told us to carry on with the treatment, god this is such hard work. We are exhausted.

[3] Last night was the 3rd night in a row we did not go to bed. [Parent's name redacted] is being amazing and sitting with [Name redacted] all night awake allowing me to have naps! The clinic have stopped her treatment today as her sodium levels are sky high so we will go back to the clinic in the morning and another blood test. We all had a lovely nap this afternoon and [Name redacted] has had a great day. Felt like I got my little girl back. The Dr says the steriods are making her crazy so we are weaning her off them. She is asleep now so i’m praying she wakes up as happy as she went to sleep. I cannot bear to see her as sad as she has been.

That’s a lot for a child to go through, but surely it’ll be worth it in the end… well, six days later.

Haven’t updated page in a few days because [Name redacted] has been in intensive care in Texas Childrens Hospital. We had an MRI and it showed her tumour had grown and was pressing on ther brain stem causing her breathing problems and a facial palsy and alot of pain. Having been told how much it had grown in 3 weeks [Parent's name redacted] and I made the decision to bring her home. So the hospital helped organise medication and my sister got onto flights at home. We left the hospital yesterday with a very poorly little girl and our hearts shattered. Shortly after driving off [Name redacted] started talking and playing around something she had not done in 4 days. We got home and again she perked up.

So, the child’s cancer is progressive – that’s bad news for everyone, but how did Burzynski take it?

That day’s entry continues as follows:

We had an appointment at Burzynski clinic this morning to tell them our plans. Dr Burzynski explained that yes the tumour has enlarged but this is due to the tumour breakdown because of the treatment. The fact is it is working. The problem is there is very little room for more breakdown/swelling. We have made the decision to continue with the treament and hope other other medications will control the swelling. [Name redacted] has been so happy today and her facial palsy seems to of improved. I have cried so much over these last few days but im not ready to give in. We will fight this disease and we will win. The treatment works we just have to pray we have enough time.

Tommorow we fly home and and will continue treatment at home under our local consultant.

WTF???

An MRI scan shows that the child’s condition is getting worse and that their cancer is progressing and yet Burzynski tells the parents that this is due to his treatment working?

Okay, so this is how quacks of all stripes rationalise away their failures – if the patient’s symptoms don’t respond to ‘treatment’ and even get worse then that’s because things always get worse before they get better and that ‘proves’ that the ‘treatment’ is working.

That’s one way of looking at it… the other way of looking at it leads inexorably to the words ‘lying sack of shit’. ‘It gets worse before its get better’ is just about the oldest lie in the quack’s book and an unforgivable line of bullshit to run with when dealing with a child whose cancer is verifiably progressing.

Since that entry, the poor kid’s had a difficult time of things, including a number of surgeries to release fluid pressure on the brain, all of which taken place in the UK. We actually have to wait until February 2012 for any further reference’s to Burzynski, and while the child’s circumstances have changed, the bullshit her parent’s have been fed remains very much the same.

[Name removed] and her family have been talking to Dr’s in the US who have agreed that it is unsafe to put her back onto the Anteneoplaston therapy because her tumour is so close to her brain stem and the treatment causes the tumour to swell before it breaks down. They have however asked to put her on a treatment called Gene Targeted Therapy. Basically they take a sample of tumour and in a lab test it’s genetics and test which drugs will work. They then give those drugs to [Name removed]. We are very excited to be offered another drug because we knew that the Anteneoplaston’s would kill her if we continued on them but we are desperate to cure her. The Gene Targeted Therapy is having great success in adults. We pray it will do the same for [Name removed]. We now need to continue to fundraise so we can start this treatment and carry on with it. Sounds impossible but we can’t give up hope. Any fundraising ideas please email us via the web site.

So, four months later, Burzynski is still sticking with his ‘if it get worse it proves its working’ bullshit, only he’s now switched over to his backup plan, ‘gene targeted therapy’, which Orac has already given the once over

Unfortunately, Burzynski’s approach to “personalized gene-targeted anticancer therapy” appears to fall prey to the assumption that he knows enough about the molecular pathways to be investigated to reliably use the results of various genomics assays to guide anticancer treatment. In essence, it’s as though Dr. Burzynski read a book called Personalized Cancer Therapy for Dummies and decided he is an expert in genomics-based tailoring of targeted therapies to individual cancer patients. I’ll try to show you what I mean.

Please read Orac’s analysis in full as it will really bring how just how low Burzynski is willing to stoops just to keep the money rolling in.

The one bright spot on the horizon in all this may be a reference, in a diary entry dated six days later, to a ‘Dr Woolfe’ in Boston who the family are in contact with – I can’t find a a doctor of that exact name, practising in the Boston are but there does appear to be at least two research neurologists by the name of  ‘Dr Woolf’ operating in that area , so that could be a good sign for the future.

For once, I can’t say any more as those last couple of references to Burzynski on this kid’s diary have left me feeling too angry for words.

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  • Robert Blaskiewicz

    This is it. The lowest of the low. Grr. Anger.

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  • Simonjohnpowell

    I watched the end of the programme last night and cried my eyes out at what that little girl was going through, burzynski is a terrible human being I just wish the US authorities would shut him down.

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  • Mrs Grimble

    I’m angry too – at this child’s UK doctors as well as “Dr” Burypatients.  Why the bloody &!*$ are are they going along with Burypatients’ cr*p?? Why aren’t they telling the parents that this callous conman’s treatment is no better and probably a lot worse than anything their child can get at GOSH?

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  • Orac

    In all fairness, for some rumors and some treatments, there is such a thing as a “tumor flare” reaction to initial treatment, in which the tumor “swells” and gets slightly larger before shrinking. Of course, a flare is distinguishable from progressive disease in that a flare is temporary. Clearly what this unfortunate child is experiencing is not tumor flare in response to treatment.

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