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IBTA e-News

The monthly bulletin for our
international brain tumour community

August 2015

Treatment news

Dexamethasone in recurrent glioblastoma treatment may reduce survival

A study published in the British Journal of Cancer has found that recurrent glioblastoma patients receiving higher dose dexamethasone (greater than 4.1mg per day) had a poorer outcome than those receiving lower doses. The authors analysed patient data from a recent phase III trial for the NovoTTF-100A system and concluded that dexamethasone may interfere with the immune functions necessary for the treatment of glioblastoma. Read more (registration required for news site).

Better glioblastoma outcome if chemotherapy and radiotherapy delayed for MGMT status test

Retrospective analysis of three glioblastoma studies has found that delaying post-operative chemoradiotherapy to allow for MGMT promoter status tests is associated with a better outcome. MGMT promoter status informs treatment and influences outcome but can be difficult and time-consuming. This paper, published in BMC Cancer, finds that starting radiation sooner than 24 days of surgery has a negative impact on tumour progression and survival. Read more (open access paper).

Product recall: Temodar® and Temozolomide bottles due to potential child–resistant closure failure

Merck has announced that some bottles of Temodar® and Temozolomide could potentially have cracked caps, causing the child-resistant closure to become ineffective. If a crack is found, consumers should contact Merck, who will provide a replacement cap. The medicine is unaffected and consumers are instructed to continue using the drug as directed. Read more.

Medulloblastoma can be classified without surgery, study finds

Magnetic resonance spectroscopy (MRS) can be used to non-invasively classify childhood medulloblastomas into clinically important molecular groupings, a study published in Neuro-Oncology has found. Of the four medulloblastoma subtypes normally identified after tissue analysis (SHH, WNT, Group 3 and Group 4), MRS imaging can differentiate subgroups SHH, WNT from Groups 3 and 4. Read more.

Brain tumour 'laser surgery' gets a showing

An experimental surgical technique that uses Raman spectroscopy technology to provide real-time identification of cancer tissue has been trailled on a brain tumour patient in London, UK. The 'iKnife' probe was used during an awake craniotomy on a 22 year old patient and the operation was featured widely in the British and  international media. Read more (with video).

A modified Atkins diet for malignant gliomas: weighing up the evidence

Low-carbohydrate, high-fat diets for malignant glioma patients are the subject of a review in Neuro-Oncology Practice, which examines the evidence arising from published dietary intervention studies. The article discusses the rationale for such ketogenic diets, introduces the Modified Atkins Diet and identifies future research needs. Read more (full paper).

Ben Williams releases update for 'Surviving "Terminal" Cancer'

Long term glioblastoma survivor Ben A Williams (USA) has published (in collaboration with Stephen Western) a free annual update to his 2002 book, Surviving 'Terminal' Cancer. This update discusses recent research, such as that for NovoTTF-100A (Optune in the USA), DCVax-L and rindopepimut. Diagnosed in 1995, Williams argues that patients are best served if they utilise multiple treatment modalities. Read more (key updates on page 84).

Research roundup

New Protocol to bring standardisation of MRI imaging in brain tumour clinical trials

A new protocol has been published by the Jumpstarting Brain Tumor Drug Development Coalition that aims to bring consistency to how MRI results are used in brain tumour research. MRI imaging is vital for assessing tumour size and progression although variations exist between treatment centres in how results are assessed. These consensus recommendations, published in Neuro-Oncology, outline a Brain Tumor Imaging Protocol for all clinical trials going forward. Read more.
A webinar for those wishing to learn more about the Brain Tumor Imaging Protocol will be held on 22 September 2015 at 11am US Eastern Time (GMT-4:00). The session is designed for radiologists, imaging experts, scientists, and clinicians involved in neuro-oncology clinical research across academia and industry. Register here (free).

Gender affects survival in childhood brain tumours

Girls live significantly longer than boys following gross total resection for high grade glioma, a retrospective review of patient data published in Neurosurgery has found. From a sample of 97 patients aged under 21 (mean age 11), overall survival following surgery was six years longer in females than males (8.1 years vs 2.4 years). Survival also correlated with extent of surgery and location of tumour. Read more.

CMV and glioblastoma: could a virus be causing brain tumours?

Looking back at over ten years’ research, neurosurgeon Dr Charles Cobbs gives his perspective on the possibility that cytomegalovirus (CMV) infection is implicated in the growth of a glioblastoma. All views expressed in Dr Cobbs' personal blog piece do not represent those of any organisation or institution. Read more.

Gout drug derivative shows potential as glioblastoma treatment

Colchicine, a common treatment for gout, has been proposed as having anti-tumour effects, but its use has been limited owing to concerns about poisoning. In research published in the Journal of Neuro-Oncology, a colchicine derivative named AD1 has been shown to induce cell death in glioblastoma cells, suggesting it may be a potential future treatment. Read more (abstract).

Carboplatin in childhood low-grade glioma

A retrospective review of 266 patients published in the International Journal of Cancer finds that carboplatin given alone may be just as effective as multiagent chemotherapy in paediatric low grade gliomas that cannot be resected. The paper's authors conclude that further research is needed to establish the role of this approach. Read more (abstract).

Two retrospective studies in Pediatric Blood & Cancer have examined carboplatin hypersensitivity, an adverse reaction that occurs in 6% to 32% of paediatric low grade glioma patients. One analysis performed in Victoria, Australia, found that rates of carboplatin hypersensitivity varies between treatment protocols and that attempting carboplatin ‘desensitisation’ had limited effect. Read more (abstract). The other study, performed in Philadelphia, Pennsylvania, USA, found that carboplatin re-exposure after initial hypersensitivity was successful in a majority of the 55 patients examined. Read more (abstract).

Malignant brain tumour 'biomarkers' can be detected in cerebrospinal fluid samples

DNA from a variety of malignant brain tumours is detectable through cerebrospinal fluid (CSF) when the tumour is in contact with CSF, reports a study published in Proceedings of the National Academy of Sciences. In 74% of the 35 primary brain tumours analysed, DNA specific to the tumour was detected – a conclusion consistent with earlier studies. It is hoped that CSF samples – such as those from lumbar puncture – could be used to aid diagnosis and management. Read more (abstract).

Kallikreins may be new marker for assessing high grade glioma prognosis

Research published in BMC Cancer shows that levels of kallikrein enzymes within tumour samples correlate with overall prognosis in high grade astrocytoma patients. This suggests kallikreins may serve as a prognostic marker. Read more (full paper).

Digesting the role of nutrients in glioblastoma growth

An article on the National Brain Tumor Society (USA) blog site offers a lucid and concise explanation of the role that nutrients play in glioblastoma growth. Recent research has shown that a tumour’s access to glucose and acetate – two ‘fuels’ used by the brain – could be undermining existing glioblastoma treatments. Read more.

Canadian brain tumour registry now under construction

Dr Faith Davis, professor and vice-dean of the School of Public Health at the University of Alberta, Canada, is working with the Brain Tumour Foundation of Canada to develop Canada’s first brain tumour registry. No database of Canadian brain tumour patients presently exists and the project follows a successful feasibility study that started in November 2012. Read more.

Company news

Orphan Drug Status for Tocagen's Toca 511 & Toca FC combination treatment

Toca 511 & Toca FC, Tocagen’s first treatment candidate, has been granted orphan drug designation for the treatment of glioblastoma by the US Food and Drug Administration (FDA). Toca FC is a novel formulation of an antifungal drug (5-FC) given orally. Toca 511 is a retroviral replicating vector (RRV) that inserts a gene for the enzyme cytosine deaminase (CD) into glioblastoma cells, which converts 5-FC into 5-FU (5-fluorouracil). Read more (company press release).

Ziopharm’s Ad-RTS-hIL-12 granted Orphan Drug Status by US FDA for malignant glioma treatment

The FDA has granted orphan drug designation to Ad-RTS-hIL-12 with veledimex. The treatment has been developed by Ziopharm and is currently being studied in phase I trials. Ad-RTS-hIL-12 is a genetically modified adenovirus injected directly into a tumour that is given in combination with the oral drug veledimex, an ‘activator’ designed to trigger the immune system to target the tumour. Read more.

Glioblastoma therapy market forecasted to grow 11.9% annually

The global glioblastoma therapeutics market is set to grow progressively over the next four years, at a rate of 11.94% annually, according to Technavio's ‘Global Glioblastoma Multiforme Therapeutics Market 2015-2019’ report. Growth is being driven by a significant unmet need in glioblastoma care and newly emerging treatment technologies, the report’s authors find. Read more.


Will you join us in the #IBTAWorldWalk? Register and report your walk for 'Walk Around the World for Brain Tumours' 2015

Many thanks to all those organisations around the globe who have already let us know about their walks taking place throughout this year and who have registered with us to donate their symbolic mileage to the IBTA’s "Walk Around the World for Brain Tumours". Please be sure to register your walks for this year by going to the IBTA website and completing the register/report form here. And share what you have achieved and follow others’ progress via Twitter with the hashtag #IBTAWorldWalk.

We also want to hear all about those walks that have already taken place since January and to receive the symbolic mileage ‘donation’ from these.  Please visit the IBTA website where you will find a form for registering and/or reporting your walk, plus information on where to send photographs. Last year we raised awareness of brain tumours by symbolically encircling the world nearly thirteen times - wouldn’t it be great if we can walk even further in 2015?

Get ready for the 2015 International Brain Tumour Awareness Week - #IBTAWeek

The 9th International Brain Tumour Awareness Week will be held from Sunday, 25th October to Saturday, 31st October. We'd be delighted if you would organise an activity that will contribute to increased awareness about brain tumours.
It could be a walk (see above), a picnic, an information seminar, a scientific conference, or the distribution of a statement to local media which draws attention to the particular challenges of a brain tumour and the need for a special response and an increased research effort. Share what is going on and keep in touch via Twitter with the hashtag #IBTAWeek. For further details of the International Brain Tumour Awareness Week, including a list of FAQS, please click here.
Please register/report your Awareness Week activity by completing this form.

Don't forget to tell us your organisation’s news!

We warmly invite the IBTA’s collaborating brain tumour patient organisations to keep us up-to-date with their news.  Please let us know what your organisation is doing to advocate for better brain tumour care and support so that we can share information about your activities via this e-News, to inform and inspire others in our international community.

Brain tumour community news

Patient survey open: your clinical trial experiences

Researchers working on behalf of the National Institute of Health Research, EUPATI (European Patients’ Academy on Therapeutic Innovation), ISPE (the International Society for Pharmaceutical Engineering) and the UK NHS, are asking patients (or their carer / representative) to complete a 2 – 3 minute online survey about their experiences of clinical trials. Answers are anonymous and results will be used to improve clinical trial participants’ experiences. Click here (closes 13 September 2015).

And in other news...

Opera at the (operating) theatre

A remarkable video shows opera singer and glioblastoma patient Ambroz Bajec-Lapajne from Slovenia perform 'Gute Nacht' by 19th century composer Franz Peter Schubert while undergoing awake brain surgery. The operation was performed successfully at University Medical Center Utrecht, The Netherlands, where Ambroz’s singing helped surgeons monitor his brain’s functioning. Read more (with video).

Former US President Jimmy Carter starts treatment for brain tumours

90 year old former President Carter has recently announced that he has four ‘small’ brain tumours, said by US newspaper reports to most likely be metastases spread from a melanoma skin cancer. On 3rd August, he underwent surgery to remove liver tumours and for the brain tumours he has now started radiotherapy alongside pembrolizumab (Keytruda), a drug designed for melanoma metastases. Read more.

Loom to the Moon lands Guinness World Record

A loom band bracelet long enough to reach the moon has been constructed, raising £200,000 for brain tumour research and causes. The astronomically long creation was started last year by five year old Skye Hall, who later died of a brain tumour. With the help of dozens of volunteers and children from around the world, Skye’s parents and younger brother finally completed the 12529 metre bracelet and were awarded the Guinness World Record for the Longest Loom Band Bracelet (team). Read more.

Conference news

Call for abstracts: 5th Annual Brain Mets Congress – deadline 31st August

5th Annual Brain Metastases Research and Emerging Therapies Conference
2-3 October 2015
Marseille, France

Abstracts can be submitted here.

A travel grant is available for three ‘young investigators’ worth € 600 (USA), € 600 (ASIA) & € 300 (Europe) to support travel expenses. Read more.

Upcoming conferences

Keep up to date with future scientific conferences and events on the IBTA website conferences page here.


15th Interim Meeting of the World Federation of Neurosurgical Societies (WFNS)
8-12 September 2015
Rome, Italy

II International Symposium on Clinical and Basic Investigation in Glioblastoma “GBM 2015″
9-12 September 2015
Toledo, Spain

One Day Against Brain Tumors
11 September 2015
Ferrara, Italy

Paediatric Oncology Solid Tumour Study Day
14 September 2015
London, UK

12th Annual Meeting of the Asian Society for Neuro-Oncology (ASNO 2015) – “Neuro-Oncology Challenges in a Diverse Asia”
17-20 September 2015
Manila, Philippines

The Brain and Gliomas – “When The Connections Are Crucial”
24-26 September 2015
Brescia, Italy

18th ECCO-40th ESMO European Cancer Congress: Reinforcing Multidisciplinarity
25-29 September 2015
Vienna, Austria

If you are aware of a brain tumour-relevant conference - including any patient conferences that we have not yet listed on the IBTA website then please let us know.

IBTA Website
IBTA Website


Who we are

The International Brain Tumour Alliance was established in 2005. It is a network of support, advocacy and information groups representing brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the field of brain tumours.
For more information, please visit  


Tell us what you think!

We love to hear from you if you have any news that you would like to share with the IBTA community. Just send us an email:
We will do our best to relay as much information as possible to our subscribers via this monthly newsletter and our website. The selection of e-News entries is at the sole discretion of the editors.
Copyright © 2015 The International Brain Tumour Alliance, All rights reserved.


The International Brain Tumour Alliance (IBTA) makes every effort to be accurate regarding the information contained in this e-News (or in any documents, reports, notes or other material produced for and on behalf of the IBTA to which we provide a link in this e-News).  However, the IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. The information contained in this e-News is for educational purposes only and should in no way be taken as a substitute for medical care nor is the information on the IBTA website meant to constitute medical advice or professional services. For medical care and advice, please contact your doctor.

Other websites linked from the IBTA e-News are not under the control of the IBTA. Therefore we take no responsibility for their content. The IBTA has provided these links as a convenience to you and can in no way verify the information, quality, safety or suitability of linked websites.

Any company sponsorship of the IBTA's projects does not imply the IBTA's endorsement of any particular form or forms of therapy, treatment regimen or behaviour. (For further details of our sponsors, please see our Sponsorship Policy).

The views and opinions in the materials included in this e-News may not necessarily be those of the International Brain Tumour Alliance.

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