BRAF is a known oncogene, a gene that when mutated causes cancer. About 50% of patients with metastatic melanoma have a BRAF mutation in their tumour and it occurs in many other common cancer types including thyroid, colorectal, ovarian, and lung.

Importantly, BRAF mutations are also found in the majority of pilocytic astrocytoma brain tumours according to research conducted at Queen Mary, University of London and funded by Samantha Dickson Brain Tumour Trust. Pilocytic astrocytoma is the most common benign brain tumour in children. This means that drugs like dabrafenib may also have value in treating certain primary brain tumours such as pilocytic astrocytoma.  Read more about this research here.

Chief Executive of Samantha Dickson Brain Tumour Trust, Sarah Lindsell, said: “We are pleased to see trials of new drugs and treatments taking place, especially for secondary brain tumours, about which so little is currently done.  It is a real step forward for people with a secondary tumour from melanoma and we hope will lead to more positive outcomes for patients in the future.  Brain metastases more generally are an increasing problem as improved treatments for cancers in other parts of the body mean more people are surviving these longer and, in some cases, going on to develop metastases in parts of the body such as the brain. SDBTT recently met with Cancer Research UK and Professor Mike Richards, the National Cancer Director at the Department of Health to discuss this issue.”

The following article was published in The Lancet today:

Trial of new drug, dabrafenib, for advanced melanoma offers potential breakthrough in treatment of brain metastases (The Lancet)

Results of a phase 1 trial published in this week’s Lancet show substantial shrinking of metastatic tumours in patients treated with a new drug, dabrafenib, that blocks the activity of the cancer-causing mutated form of the BRAF gene, which occurs in about half of melanomas. Dabrafenib also showed the most activity of any systemic treatment to date against secondary melanoma tumours in the brain.

BRAF is a known oncogene, a gene that when mutated causes cancer. About 50% of patients with metastatic melanoma have a BRAF mutation in their tumour and it occurs in many other common cancer types including thyroid, colorectal, ovarian, and lung. The most common BRAF mutations are Val600Glu and Val600Lys.

The initial stage of the study was designed to establish the safe dose. A total of 184 patients with incurable solid tumours were enrolled (156 with metastatic melanoma) and given escalating doses of dabrafenib. The investigators established a recommended phase 2 dose (RP2D) of 150 mg twice daily.

In the second stage, efficacy at the RP2D was studied in three groups of patients with BRAF-mutant tumours: those with advanced melanoma, with untreated melanoma brain metastases, and with other BRAF-mutant solid tumours.

“Brain metastases in most [nine of ten] patients given dabrafenib reduced in size, with four patients’ metastases completely resolving”, explains Dr Gerald Falchook from the University of Texas MD Anderson Cancer Center in the USA, who is lead co-author of the study with Dr Georgina Long from Melanoma Institute Australia and Westmead Hospital in Sydney, Australia. “Patients with melanoma and brain metastases typically survive for less than 5 months; yet in this study, all ten patients were alive at this stage and two patients had durable antitumour activity with survival beyond 12 months. One patient remains on treatment at 19 months”.

Melanoma is notoriously difficult to treat, and there is currently no systemic therapy that prolongs survival for advanced melanoma patients whose cancer has spread to the brain.

In the 36 patients with Val600 BRAF-mutant melanoma treated at the RP2D, half had confirmed responses (tumour shrinkage). In 27 patients with Val600Glu BRAF-mutant melanoma, the overall confirmed response rate of 56% was similar to that shown in a phase 3 trial of vemurafenib, the first approved treatment directed at Val600Glu BRAF-mutant melanoma.

Confirmed responses to treatment were also noted in 4 of 18 patients (22%) with Val600Lys mutant melanoma.

Dabrafenib also showed antitumour activity (partial responses and stable disease) in BRAF-mutant non-small-cell lung, colorectal, papillary thyroid, and ovarian cancers, and in gastrointestinal stromal tumour.

The most common grade 2 or higher side effects observed included cutaneous squamous-cell carcinoma (a less serious form of skin cancer; 11%), fatigue (8%), and pyrexia (6%).

The authors conclude: “The high response rate in melanoma brain metastases and the near-equivalent progression-free survival in patients with Val600Lys or Val600Glu BRAF-mutant melanoma justify the inclusion of such patients in further trials of potent BRAF inhibitors.”

In a linked Comment, Geoffrey Gibney and Vernon Sondak from H Lee Moffit Cancer Center and Research Institute, Florida, USA say: “[These findings] are impressive for two reasons: no previous systemic treatment has shown this degree of clinical activity against melanoma brain metastases, and dabrafenib was not predicted to cross the blood-brain barrier in substantial quantities…Overall, the prospects for use of BRAF-targeted treatment in new patient populations are encouraging.”

The Enduroman Arch to Arc is known as the most gruelling and challenging endurance event known to man, it involves an 87 mile run from London’s Marble Arch to the Dover coast, a swim across the English Channel to the French coast and finally a 181 mile bike from Calais to the Arc de Triomphe in Paris. Many people and teams have attempted this ultimate challenge, but few have successfully completed it. The Boxfit team not only wants to complete this challenge, but their goal is to beat the world record and they’re putting themselves through this for SDBTT.

Boxfit will be embarking upon this adventure on 22nd September 2012, the team consists of 6 members. All team members will be dedicating much time to train together and prepare for this extraordinary challenge. Only 4 teams have ever completed this challenge, the current world record stands at 35 hours and 53 minutes and the Boxfit Team have secured an official Guinness World Records Representative to follow this record breaking attempt.

The team are taking on this challenging event on behalf of the Friends of SDBTT Benjamin Reep Group.  To keep updated on how the training is going please visit www.boxfit.org.uk for the latest news on this.

To support the Boxfit Arch to Arc Team and make a donation please go to https://mydonate.bt.com/fundraisers/boxfit6.

Hannah, who runs the SDBTT Hannah Jones Fund with her family has raised a staggering £160,000.  She has been spurred on by the severe lack of funding into brain tumours and has made a significant difference to the research SDBTT has been able to fund.

Hannah, who has undergone three major operations on her brain has suprised everyone, including her doctors, with the recovery she has made. She is now studying at Chester university, whilst still finding time to carrying on fundraising and help raise vital awareness for brain tumours and the need for increased research and support.

Read the full article here.

Samantha Dickson Brain Tumour Trust (SDBTT) welcomes new Guidance governing how GPs refer suspected brain tumour patients for MRI scans which will improve outcomes and save lives which responds directly to calls from Samantha Dickson Brain Tumour Trust and other brain tumour charities for health authorities and Government to take action to speed up the diagnosis of the condition.

If busy medical professionals are able to act on the Department of Health’s (DH) new best practice guidance ‘Direct Access to Diagnostic Tests for Cancer’ (issued in April) it will go a long way to achieving one of the key aims of the ‘Manifesto for Everyone Affected by a Brain tumour’ – developed by Samantha Dickson Brain Tumour Trust and other brain tumour charities – earlier and better diagnosis of brain tumours.

In order to facilitate faster diagnosis of brain tumours, the new guidance encourages GPs to initiate a direct referral for MRI brain scan at the same time as initiating an urgent referral to a specialist and sets out the symptoms which would justify such a referral.

Sarah Lindsell, CEO of SDBTT, said “58% of brain tumours are presently diagnosed because of an emergency presentation with only 1% of patients diagnosed following an urgent GP referral for suspected cancer – this guidance is a major breakthrough to change these dreadful statistics in the future.   It has been a long-standing aim of Samantha Dickson Brain Tumour Trust to reduce diagnosis times for both adults and children, which is evidenced through our investment in our HeadSmart: be brain tumour aware campaign.  We hear devastating stories of late and missed diagnosis on a daily basis and welcome any action to improve diagnosis times for patients in the future as it will reduce long term disabilities and ultimately save lives.“

The guidance sets out three sets of symptoms, which since 2005 have justified urgent referral for a maximum 2 week wait, but which would now also justify direct referral to scanning. These are detailed in the notes but include combinations symptoms such as headaches, vomiting, posture change and blackouts. It does point out that clinical judgement is still required because while 70% of patients with a brain tumour will experience a headache during their illness the chance of a headache being associated with a brain tumour is around 0.09%.

At the same time it confirms that over the next four years an unspecified share of the £450m dedicated to the Improving Outcomes: A Strategy for Cancer will be dedicated to raising the signs and symptoms of cancer and fund increased GP access to diagnostic tests such as a MRI.

Sarah Lindsell added: “The challenge is not to ensure ALL GPs are aware of this new guidance, including the signs and symptoms of brain tumours, and implement it effectively.  Brain tumours kill more children and adults under 40 than any other cancer and we will promote this guidance to all GPs and people affected by a brain tumour to save lives.”

The Department of Health’s announcement is available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_133510

The SDBTT Alex Bolt Fund, one of our dedicated support groups, has recently presented a cheque for £85,000 to Samantha Dickson Brain Cancer Unit at University College London’s (UCL) Cancer Institute. The Alex Bolt Research Fellowship, currently held by Dr Steve Pollard, will conduct research into the most common malignant brain tumour and its treatment and this significant investment by the group, will make a real difference to the research being carried out.

Dr Pollard is at the forefront of research into cancer stem cells in brain tumours at UCL, noting that a great highlight for him has been the progress in looking for new drugs that could be used to treat glioblastoma, the most common and most aggressive malignant primary brain tumor.  The very latest cell imaging technologies and analysis tools have been used to identify drugs that can block the proliferation of glioblastoma cells without affecting normal cells.  The research has shown that certain drugs which block related proteins called kinases can stop GSCs multiplying in the lab. Such new ‘smart drugs’ may improve treatment for people with glioma brain tumours.

“This is really exciting progress in research into brain tumours.” says Sarah Lindsell, Chief Executive at SDBTT. “We are advancing daily in our understanding of how brain tumours work and are therefore better able to fight them with appropriate treatment.”

For those lucky people living in Bedford, for one night only West End talent will be descending on the town, bringing a night of musical theatre in aid of SDBTT.

Tickets are priced at £10, to book contact Kathryn on 07753 634 985 or buy online here.

Well fear not, there is hope for your overgrown garden! If you live in Birmingham, a fab crew of gardeners are out and about during May, saving the Midland’s gardens from a jungle like fate.

For a donation of £12 you will be supporting the Friends of SDBTT Niamh Silk Group. To make a booking contact Merron on 07973 498603 or merrons@hotmail.co.uk.

As Julia Trusler, Head of Research and Policy at SDBTT, explains, “It is shocking to read the results of a survey showing that a quarter of young people with cancer visit the GPs four or more times before being referred to a specialist. This adds to the evidence suggesting that young people with brain tumours and other cancers could be diagnosed earlier, and highlights the importance of campaigns like HeadSmart. This is a campaign to promote awareness of brain tumour symptoms in children and young adults with the aim of reducing the time it takes for them to be diagnosed.”

Find out more about the Teenage Cancer Trust’s survey

Team SDBTT were out in force on Sunday 22nd April, coming together to cheer on our dedicated runners who, after months of training, hours spent cajoling generous friends for sponsorship and nights spent nursing sore feet, were finally ready to take on the London Marathon!

Team SDBTT had 78 runners, thanks to the crafty work of Debbie Daley who cleverly persuaded the Nestle Pure Life running team to fundraise for SDBTT, adding a further 50 runners to our enthusiastic team.

Those who would rather stand at the sidelines with a cup of coffee, headed to the SDBTT cheering spot where a rowdy bunch of staff and supporters looked out for our wonderful runners and made sure we cheered profusely for them all.

After our runners completed this amazing challenge, food and drinks were served at a post event which gave the runners a chance to catch up and compare those all important finishing times!

The day was truly inspiring and the SDBTT team all felt incredibly proud (and a little smug) to have such amazing supporters, both the runners and everyone who came along to cheer. As Lisa Heath, who ran the marathon for us sums up, ‘A day to remember. I am so pleased I saved myself for the London Marathon and that I ran for Samantha Dickson Brain Tumour Trust. The crowds were absolutely fantastic.’

If this has prompted you to don your running shoes for SDBTT,  whether it be a 10k run, half marathon or the London Marathon 2013, give Nina a shout at nking@sdbtt.co.uk or call 01252 749997.

Check out the finishing times of all our runners.

We are now looking to expand our activities with the help of a team of HeadSmart Community Champions. If you are just as passionate as we are about getting the HeadSmart message out to the wider public, then you could be just the person we are looking for to make a real and lasting difference to the lives of children and young people.

Read more about becoming a HeadSmart Community Champion