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 From our good friends at the IBTA

Posted on: 06/27/2015

This is the latest edition of the IBTA e-news bulletin. Find out more about us at
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IBTA e-News

The monthly bulletin for our
international brain tumour community

June 2015

Leading news

Studies identify new glioma classifications that could guide treatment and prognosis

Two studies published in the New England Journal of Medicine (NEJM) have identified key molecular differences between various glioma types. One study analysed data sets from The Cancer Genome Atlas to deduce that the six most common forms of diffuse lower grade gliomas can be effectively grouped into three distinct molecular ‘super clusters’. A second study –  a large-scale analysis of genetic differences across a range of gliomas – found that nearly all (97%) of the tumours could be placed into one of five molecular subgroups, defined on the basis of three genetic markers (1p/19q, IDH, and TERT promoter mutations). These studies’ findings may help provide more accurate prognosis and help guide treatment decisions. Read more: NEJM editorial / news article.
In addition, research recently published in Nature Communications, also using The Cancer Genome Atlas data, has discovered that the gene TCF12 is mutated in a proportion of anaplastic oligodendrogliomas (7.5% of those analysed) and is associated with more aggressive tumours. Read more.

ASCO 2015 Highlights

Below are selected highlights from the American Society of Clinical Oncology Annual Meeting 2015 (ASCO 2015) held on May 29 – June 2, 2015, at McCormick Place, Chicago, USA. A more detailed summary can be read here (via National Brain Tumor Society).

"Encouraging results" for 'checkpoint inhibitors' nivolumab and ipilimumab in recurrent glioblastoma

Results from a 20 patient trial showed that nivolumab, either alone or in combination with ipilimumab, offered a survival benefit for patients with recurrent glioblastoma. The adverse effects were comparable to studies in other cancers and a phase III trial assessing nivolumab monotherapy with bevacizumab in patients with recurrent glioblastoma multiforme has been initiated. Read more.

'Cabaret' data shows that continuing bevacizumab (‘Avastin’) after recurrence has no benefit

Analysis of a phase II trial launched in 2009 (CABARET) shows that out of 48 glioblastoma patients who experienced a relapse after initial bevacizumab treatment, those who were randomised to continue with bevacizumab experienced no survival benefit. Read more.

Chemotherapy just as effective as radiotherapy for anaplastic glioma study says

A long-term phase III trial comparing initial chemotherapy vs. radiotherapy in patients with newly diagnosed anaplastic glioma has found no significant survival difference between the two groups. Read more.

Possible genetic marker for anaplastic astrocytoma prognosis identified

The gene IDH1 may be a prognostic marker for anaplastic astrocytoma, according to data from a phase III trial (RTOG 9813) involving 301 patients. Average survival was 7.9 years with mutated IDH versus 2.8 years for patients with unaltered IDH. Read more.

Patients with limited brain metastases may not benefit from whole brain radiotherapy following radiosurgery

Whole brain radiotherapy (WBRT) does not extend survival in patients with 1-3 small brain metastases who have received radiosurgery, a phase III clinical trial has found. Cognitive decline was more common in patients who received WBRT after radiosurgery compared to those who received radiosurgery alone, although WBRT did help control growth of the tumours. Read more.

Celldex's vaccine rindopepimut ('Rintega') shows survival benefit

A randomised phase II trial (ReACT) of bevacizumab ('Avastin') plus rindopepimut - which targets EGFRvIII, a mutated gene present in about 30% of glioblastoma tumours - has shown positive results with median survival benefit of approximately 2 months compared with patients receiving bevacizumab alone. Read more.

Full trial dataset confirms Novocure's NovoTTF-100A ('Optune') clinical benefits

The first analysis of all 700 newly diagnosed glioblastoma (GBM) patients enrolled in the EF-14 Phase III trial, which was terminated at interim due to early success, has revealed a survival benefit similar to midpoint results (median survival  19.4 vs.16.6 months). Read more.

 Promising trial results for Agenus’s Prophage vaccine in glioblastoma

A phase II trial of 46 newly diagnosed glioblastoma patients receiving Agenus’ Prophage (an autologous cancer vaccine) in addition to standard care has shown an average overall survival of approximately 24 months. Patients with lower expression of PD-L1 on their monocytic white blood cells appeared to have greatest benefit. Read more.

Karyopharm Therapeutics’ oral Selinexor (KPT-330) shows clinical effect in recurrent glioblastoma

Selinexor, an inhibitor of the XPO1 protein present in the cell nucleus, has shown a 13% overall response rate and 38% disease control rate in a phase II trial (of 16 surgically ineligible recurrent glioblastoma patients who had been pre-treated with temozolomide and radiotherapy). Read more (company press release).

IBTA news

Brain Tumour magazine out now!

The IBTA’s free 2015 Brain Tumour magazine has been released and is landing in the letterboxes of subscribers in 111 countries! This year’s edition of the magazine celebrates 10 years of the IBTA’s existence. It contains stories from patients, carers, clinicians, allied healthcare professionals, nurses and patient advocacy organisations, including reports from the IBTA’s two awareness raising activities: The Walk Around the World for Brain Tumours and International Brain Tumour Awareness Week. It can be read online here and ordered via the online form.
And don’t forget to organise your 2015 Walk Around the World for Brain Tumours and your activity for the 2015 International Brain Tumour Awareness Week (25 – 31 October). Click here for more information.

Treatment news

Elderly glioblastoma patients: factors linked to increased survival

A retrospective study published in PLoS ONE finds that several factors are associated with increased survival in newly diagnosed glioblastoma patients over the age of 80. Of 58 patients who underwent surgical resection (with intent for maximal resection) increased survival was associated with: higher pre-operative functional ability (KPS, Karnofsky Performance Status), postoperative radiotherapy or radiotherapy with chemotherapy, and lack of EGFR and p53 markers. Read more.

Lower blood glucose levels predict better survival in glioblastoma patients, study finds

 A retrospective study of patient chart data has found that lower blood glucose levels (≤6.3 mmol/L, time-weighted mean) was independently associated with longer overall survival in glioblastoma when treated with radiation and temozolomide (16 vs. 13 months median survival). The authors suggest that tight blood glucose control in glioblastoma patients be investigated further.  Read more.

Recurrent meningioma: the role of anti-angiogenic treatments

Writing in Current Treatment Opinions in Neurology, Matthias Preusser and Christine Marosi (Austria) review the use of anti-angiogenic drugs (i.e. bevacizumab, sunitinib, and vatalinib) in meningiomas that recur after surgery. The authors discuss future research avenues for treating meningiomas with signs of increased malignancy. Read more (payment required for full article).

Research roundup

Possible targets for glioblastoma stem cells found

Research published in Cell Reports has identified cellular processes crucial for glioblastoma stem-like cells (GSCs) to develop into tumours. These tumour-initiating cells, which “direct and drive” the growing tumour, are dependent upon the protein CDC20, which could serve as a target for future therapies. Read more.

Traffic pollution exposure may be associated with childhood brain tumours, study finds

Using cancer registry data from 2001-2009, researchers from Houston, Texas, USA, have found that children living in areas of high concentrations of traffic-related air pollutants (1,3-butadiene and diesel particulate matter) had higher rates of astrocytoma and medulloblastoma. Read more (abstract).

Glutamate release in malignant glioma linked to increased seizures and shorter survival

Release of glutamate due to increased activity of a glutamate transporter may be responsible for seizures and a worsened prognosis in some malignant glioma patients, research published in Science Translational Medicine has found. Approximately half of tumour samples tested had elevated expression of the SLC7A11 gene, which encodes part of a glutamate transporter, and those tumours grew faster, induced seizures and shortened overall survival than did tumours without elevated expression of the gene. Read more.

Brain tumour community news

Call for more patients to help guide future research

Patient advocates are becoming increasingly involved in directing cancer research but more needs to be done, argues Anna Wagstaff in Cancer World. Her article highlights the ‘top 10’ priorities for brain tumour research, which were recently defined by the UK-based James Lind Alliance Neuro-Oncology Priority Setting Partnership through input from patients, carers, clinicians and researchers. Read more.

Awards go to brain tumour volunteers

Denis Strangman of Canberra (co-founder of Brain Tumour Alliance Australia/BTAA and former IBTA Chair and co-founder)  has been awarded  the Australia Medal (AM) in the Queen’s Birthday Honours List in recognition of his work in the field of brain tumour advocacy. Read more.

Jennifer Gouchie, Susan Marshall and Femma Norton have been honoured with the Pencer Brain Tumor Centre's (Toronto, Canada) Guy Morrison Volunteer of the Year Award. The three women were the driving force behind The Canadian Alliance of Brain Tumour Organizations (CABTO) and have dedicated many years of service to brain tumour-related causes. Read more.

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.

And in other news...

Quality of life survey for patients and caregivers

The London School of Economics is leading a research project that seeks to improve the methods by which new medicines and treatments are considered for approval in national healthcare systems (termed Health Technology Assessment). Patients and Carers from Europe, North America, Australia and Japan/Korea are invited to complete a five minute survey about their quality of life. Patient survey / Carer survey. (Closes 17 July 2015.)

When a brain tumour scar looks like a clothes zip

A 38-year-old man chose to “show others it’s OK to laugh” by making his medulloblastoma resection scar look like a clothes zip. Running down the back of his head, he placed the head of a zipper at the base of the scar before having his surgery staples removed. He says that it “made everyone smile”! Read more.

“Yesterday all my troubles seemed so far away…”

Anthony Kulkamp Dias, a 33 year old former professional guitar player, strummed and sang songs including the Beatles’ song ‘Yesterday’ during brain tumour surgery in Nossa Senhora da Conceição, Santa Catarina, Brazil The operation was performed awake to allow surgeons to prevent injury to sensory, motor and speech areas.  Read more (includes video).

Conference news

Society for Neuro-Oncology Annual Meeting (SNO 2015) Travel Scholarship Deadline: 1st July

Seven travel scholarships of $1,500 (USD) are available for applicants from selected low-income or developing countries to attend the 20th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology (SNO 2015), to be held November 19-22, 2015, at the Marriott Rivercenter in San Antonio, Texas, USA. Read more (click ‘Travel Scholarship’ link on right side of page).

Upcoming conferences: June - July 2015

Keep up to date with future scientific conferences and events on the IBTA website conferences page here. Below are a selection of forthcoming events:

XVII Congreso Peruana de Neurocirugia (3rd Satellite SNOLA Meeting)
24-28 June 2015
Lima, Peru

Childrens’ and Young People’s Oncology Psychological and Neuropsychological Study Day
29 June 2015
London, UK

Annual Meeting of the British Neuro-Oncology Society (BNOS 2015) – “Neuro-oncology Across the Ages”
1-3 July 2015
Nottingham, United Kingdom

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


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  


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