A mum who was diagnosed with inoperable brain cancer is trying to raise £200,000 so she can go to America for last-ditch treatment.
Brave Nic Kinley, 38, says she wants to see her kids grow up despite being told by doctors that there is no more they can do to treat a tumour on her brain stem.
Now Nic and her fiancé Ceri Morgan are launching an ambitious bid to raise thousands of pounds for experimental gene therapy, known as antineoplaston therapy, in Houston, Texas.
The couple, who live in Northenden with their daughter Mae, eight, and son Finn, five, hope that the treatment at the Burzynski Clinic – which most scientists consider to be unproven – will reduce the size of her tumour and prolong her life. The therapy works by feeding a complex mixture of natural amino acids and peptides into the patient’s heart, hoping to stimulate genes which combat tumours.
Some patients have reportedly seen the size of their tumours reduce by a third, Ceri said. Interior designer Nic last year finished a course of radiotherapy at Christie Hospital – which has stopped her tumour from growing – but there was no further treatment available on the NHS.
She has now recovered enough from the treatment to allow her to once again cook a meal for her kids.
But now she wants to get even better by seeking treatment across the Atlantic.
Nic said: "Doctors over here told me that they only manage to stabilise the tumour in 10 per cent of cases.
"So I thought to myself, I am definitely going to be in that 10 per cent.
"The American treatment is like a light at the end of the tunnel.
"I am determined; there’s no question about it, there’s no way I am leaving my children."
The couple said they have been ‘overwhelmed’ by the number of offers from friends who say they will do all manner of activities to raise money.
The owners of Matt & Phreds jazz bar, on Tib Street in the Northern Quarter, have offered to put on a concert and auction, while countless other friends have signed up to do sponsored runs, cycles and other outdoor pursuits.
Nic added that one of her friends was going to shave all her hair off, while another is canoeing down the River Severn.
To contribute to Nic’s fundraising efforts, and to keep track of her progress, please visit www.nicsroadtorcovery.co.uk .
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The doctor and clinic offering this expensive, unproven, treatment are very controversial to say the least. I feel newspapers need to make this point more strongly in these articles that seem to be cropping up on an almost weekly basis.
Dr. Burzynski has been in trouble with the authorities many times in the past and recently the Texas Medical Board has instituted proceedings against him which could lead to the revocation of his medical license.
Good luck to Nic, I hope things work out for you.
The web address above is spelt incorrectly, please visit http://www.nicsroadtorecovery.co.uk
The web address above is spelt incorrectly, please visit http://www.nicsroadtorecovery.co.uk
The web address above is spelt incorrectly, please visit http://www.nicsroadtorecovery.co.uk
Very sad to hear someone else has been taken in by this so called treatment, which has no proven scientific approval,and even worse to see it promoted by the South Manchester Reporter when our region has arguably with the Christie hospital done more than most to find a proper cure for a terrible disease.
http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-antineoplaston-therapy
http://www.quackometer.net/blog/2011/11/the-false-hope-of-the-burzynski-clinic.html
I really feel for Nic and her family and wish them all the best. However, I must echo the concerns raised by Ken Lewis, who pointed out some of the serious issues with this clinic.
Details of further legal problems emerged today - when it was reported that Dr Burzynski and his companies are being sued by an elderly lady seeking damages for negligence, negligent misrepresentation, fraud, deceptive trade and conspiracy. She says that the defendants failed to disclose that her treatment was part of a clinical trial and charged her $500 per pill for drugs she could buy elsewhere for a fraction of that price.
Details of this are here: http://www.courthousenews.com/2012/01/19/43165.htm and have been discussed here: http://www.quackometer.net/blog/2012/01/burzynski-in-court-patient-treated-like-a-cash-machine.html
I think media outlets need to think very carefully before running articles which effectively promote this highly dubious clinic. I also believe the controversy surrounding the clinic ought to be reported more widely in the mainstream media and was therefore pleased to see some criticism of the clinic by Dr Christian Jessen in the Evening Standard yesterday: http://www.thisislondon.co.uk/health/article-24028848-duck-out-of-quack-nutrition.do
I'm sure there isn't anyone who won't feel for Nic and her family, especially if they are parents of young kids. However, the fact is that the Burzynski Clinic's 'last ditch treatment' is a mirage, and a very expensive one. There really isn't the slightest believable evidence that it works, but the enormous amount of money it costs IS real - and so is the time and emotional energy people spend pursuing it, at a point in their lives where both are very precious. I would strongly urge Nic and her family to go and talk frankly to her cancer specialists at the Christie about Burzynski and what they are planning, if they haven't done this already.
More information here:
http://scienceblogs.com/insolence/2012/01/more_trouble_for_dr_stanislaw_burzynski.php?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+scienceblogs%2Finsolence+%28Respectful+Insolence%29
It saddens me to read such negative comments about the Burzynski clinic. Of course we have looked into it and have spoken to my oncologist. It does not claim to be a cure, nor does it claim to work for everyone, but neither does chemo or radiotherapy. We are very lucky to have the NHS in this country and the fact is if we had to pay for chemo, radiotherapy, operations etc to treat cancer in this country then the costs would be very similar to that of the Burzynski treatment. We have spoken to numerous people who are undergoing treatment at the moment at the Burzynski clinic and they have nothing but praise to say about it. They are also having very positive results. If you were in my shoes and was told there is no further treatment in this country, then I am sure you would look at other options too? These negative comments do not help my plight, nor do they change my opinion. I will do anything to try and make sure that I will be here to guide my children through life, as I am sure anyone would.
Hi Nic
Firstly, I am sure that we all wish you the very best in what must be a horrible situation.
However, this is not about negative comments but about facts and evidence.
This clinic has been conducting "trials" for many years yet has not published results and their claimed treatments cannot be found to be replicated by anyone else.
If their treatments did work then it really makes no sense that world renowned centres such as The Christie would not be offering them. The reality is that this clinic offers something that has never been demonstrated to have the results claimed and, more worryingly, also various dubious cocktails of conventional chemo and other drugs. The facts are that cancer treatment in this country is world class and this dodgy clinic may offer hope but the evidence does not support it. The views on the Cancer Research site are interesting:
http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/
I am sure that there are people who believe that this clinic is helping them, but cancer is not one single disease and it is not predictable - remission and delayed deterioration are relatively common. Sadly, anecdotes cannot be considered reliable evidence.
I wish you well and truly hope that things work out for you.
Nic
As I said before, I'm sure the people commenting have every sympathy for the situation you find yourself in, and that we've all asked 'What would I do in her place' - especially if we are parents of small kids.
But - that can't just translate to NOT pointing out all the extensively documented problems with Dr Burzynski and his clinic. You say you've made up your mind - but there could be other people reading this who might be in the same situation as you, and who haven't. In the end people facing these terrible situations need ALL the facts - not just the rather selective information clinics offering these fringe 'last-ditch' treatments tend to put out.
It is a fact that Dr Burzynski has been in business since the mid-70s, and it is also a fact that in all that time not one of the top world-leading cancer hospitals, like MD Anderson, St Jude's or Sloan-Kettering (US), or the Royal Marsden or the Christie (UK), have adopted any of his therapies. That would ring alarm bells with me, which was why I said I hoped you had talked to your NHS doctors about it. And even if there is no further oncological treatment for your cancer, I'd hope that the NHS palliative care team could still do a great deal to help you and your family in the time (hopefully years) to come.
You say lots of other people you have talked to undergoing Burzynski's treatment have spoken positively about it, and I'm sure they have. But they are a group who have an enormous investment of last-ditch hope in the clinic. You won't be hearing from all the ex-patients of Dr Burzynski's who have sadly succumbed to their cancers, and who many blogs have discussed. So you are inevitably only getting one side of the story. And again, stories are not data. I guess that sounds very hard-nosed, but sadly it is the truth.
I truly do hope things work out for you and your family.