Could brain tumour survivors help unlock cancer cure?

Three patients who beat the odds deserve scrutiny, say experts in new documentary

04/02/15

THREE long-term brain tumour survivors could revolutionise our quest to cure all forms of cancer, say researchers.

The three men are at the heart of a documentary, Surviving Terminal Cancer, which will be premiered at London’s British Film Institute on World Cancer Day (February 4).

Two of them have beaten off a form of brain tumour called glioblastoma multiforme - dubbed “the terminator” by doctors because of its highly aggressive characteristics.

Patients live for just 15 months on average after diagnosis.

Ben Williams has lived for 20 years and Richard Gerber for eight years since diagnosis with glioblastoma multiforme.

Anders Ferry was diagnosed with anaplastic astrocytoma - another aggressive form of brain tumour – in 1999. He has survived for 15 years compared with an average of two to three years for patients with anaplastic astrocytoma.

The standard treatment for both of these types of brain tumour - surgery followed by radiotherapy and chemotherapy – has not changed for decades.

Surviving Terminal Cancer explores how the three men – all with a scientific academic background - researched and devised their own treatment programmes.

All three identified pharmaceutical drugs and naturally-occurring agents which unconnected trials have found may act individually to block specific cancer pathways.

Against doctors’ advice, the three took many of these simultaneously as a “cocktail” while undergoing the standard treatment offered to patients like them.

None of the therapies was approved for use in brain tumour patients and barring one (Tamoxifen) they were not licensed for use against any form of cancer.

Professor Williams and Dr Gerber saw their tumours disappear and their disease has not recurred.

Dr Ferry’s tumour has recurred six times but he continues to defy the odds, remaining on his cocktail regime and seeking out experimental treatments wherever possible.

Surviving Terminal Cancer reveals the desperate measures the men took to secure the drugs they believed would help to keep their disease at bay – including forging prescriptions, switching medications illicitly with other patients and, in the case of physical chemist Dr Ferry, an attempt to manufacture his own supply of a compound that was about to be withdrawn from the market.

The film argues that the men’s survival challenges the orthodox scientific approach to improving cancer treatments.

In particular, it questions the reliance of researchers on randomised controlled trials involving single drug agents.

It also asks why drugs already approved to treat other conditions are not more often trialled on cancer patients – a practice known as “repurposing”.

Surviving Terminal Cancer was written and directed by entrepreneur Dominic Hill, who lost his brother-in-law to glioblastoma multiforme in 2010 and set out to discover why the prognosis remains so bleak.

The feature-length documentary - made by Mr Hill over two and half years on a shoestring budget – includes interviews with several world-renowned cancer scientists who call for a change in direction by researchers.

The screening on February 4, supported by The Brain Tumour Charity, will be attended by more than 400 people affected by brain tumours. It will be followed by a panel discussion involving internationally-renowned brain tumour experts and the three men whose stories feature in the film.

The panel will be chaired by Nottingham consultant neuro-oncologist David Walker, president of the British Neuro-oncology Society.

On February 18 the film will be screened to a similar audience at The Lincoln Center in New York, after which it will be freely available on the internet.

Mr Hill has also brought together a group of researchers from around the world who hope to secure funding for a trial involving the use of multiple drug therapies on patients newly-diagnosed with gliablastoma multiforme.

Mr Hill said his brother-in-law’s death and its devastating impact had sparked his “desperate scramble” for knowledge about glioblastoma multiforme, treatment options and the state of research into the disease.

“I could not believe, nor accept, that a young man’s life could be given up on without even trying.

“Patients facing the worst diagnosis known to man, should not also have to be victims of man-made problems and paralysis.

“I have made this film to try and disseminate critical information to future patient populations about the invisible barriers they will face beyond their biological diagnosis, that preclude in most cases their access to the treatments at the front of the innovation curve.”

Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “Survival rates for patients diagnosed with an aggressive brain tumour have barely improved in the last 40 years.

“We are determined to change that by working with patients and researchers towards more effective treatments.

“Surviving Terminal Cancer asks crucial questions about how this can be done, which is why we are supporting its premiere and the panel discussion afterwards on February 4.”

The Brain Tumour Charity recently published its five-year Research Strategy, A Cure Can’t Wait, setting out plans to drive forward the search for more effective treatments for the disease.

A short trailer is available at https://www.youtube.com/watch?v=SXLvI6sM37Y

For a link to the documentary, please contact Polly Newton, PR and Media Manager, The Brain Tumour Charity.

Further case studies – including UK patients with glioblastoma multiforme – are available on request.

Polly Newton, PR and Media Manager, The Brain Tumour Charity.

DD: 01252 418191 | M: 07990 828385 | polly.newton@thebraintumourcharity.org

About The Brain Tumour Charity
Registered Charity No. 1150054 (England and Wales) SC045081 (Scotland)

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours and is making a difference every day to the lives of people with a brain tumour and their families. 

They fund pioneering research to increase survival and improve treatment options and raise awareness of the  symptoms and effects of brain tumours to get earlier diagnosis and to help families cope with everything that the diagnosis of a brain tumour brings.  They provide support for everyone affected so that they can live as full a life as possible, with the best quality of life.

They fund and promote the UK-wide HeadSmart campaign, raising awareness of the signs and symptoms of brain tumours in children and young people to make earlier diagnosis a reality.  Earlier diagnosis will reduce long term disabilities and save lives.  In just thee years, HeadSmart has reduced average diagnosis time from 9.1 weeks to 6.7 weeks.

Find out more at: www.thebraintumourcharity.org

Members of the Association of Medical Research Charities, The Information Standard, The Helplines Partnership and the Fundraising Standards Board.

Brain tumours – the facts

Brain tumours are the biggest cancer killer of children and adults under 40.

Over 9,300 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that’s 25 people every day.

Almost 5,000 people lose their lives to a brain tumour each year.

Thousands more are diagnosed with secondary brain tumours, which are not recorded.

Brain tumours reduce life expectancy by on average 20 years – the highest of any cancer.

Just 14% of adults survive for five years after diagnosis.

Brain tumours are the largest cause of preventable or treatable blindness in children.

Childhood brain tumour survivors are 10 times more likely to suffer long term disability than well children. 

This accounts for 20,000 additional disabled life years for all the children who are diagnosed each year.

Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. 

Over £500m is spent on cancer research in the UK every year, yet less than 2% is spent on brain tumours.