IBTA e-News – January 2014

By 15th January 2014 September 6th, 2017 e-News Archive

How many people with brain tumours? The subject of how many people develop a brain tumour in the world each year is a vexed question. Several years ago the IBTA commissioned the Central Brain Tumor Registry of the United States (CBTRUS) to undertake a study and we accepted a very conservative and highly qualified figure of at least 200,000 new cases per annum. Estimates are complicated by an absence of national cancer registries and formal diagnoses.

On 12 December 2013 the International Agency for Research on Cancer (IARC) released the latest data for 28 types of cancer in 184 countries (GLOBCAN 2012). To arrive at estimates of incidence for CNS tumours you should first go here, click on “brain, nervous system”, transfer the words to the box on the right, click on “both sexes” and click on “execute”. That will generate a figure of 256,213 with approximately two-thirds in the “less developed regions” and one-third in the “more developed regions”. Clicking on “mortality” will give you a figure of 189,394. A “rule of thumb” comparison with the official figures from individual countries with developed cancer registries will underline the conservative nature of the figures in GLOBCAN but these overall figures identified above represent a valid starting point.

Childhood cancer: 15 February 2014 is designated as International Childhood Cancer Day (ICCD) and is an opportunity to raise awareness about the needs of paediatric brain tumour patients. A paper on childhood cancer survival in Europe 1999-2007 is one of two papers based on the EUROCARE-5 study which have been uploaded to the EUROCARE website.

Clobazam: The US Food and Drug Administration (FDA) has issued a warning that the anti-seizure drug Onfi (clobazam) can cause serious skin reactions called Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). In India, Canada, New Zealand and the United Kingdom it is known as Frisium and in Japan as Mystan.

Papillary craniopharyngiomas: Researchers in the USA have identified that the single mutated BRAF gene is the sole driver of 95% of these rare tumours which occur mostly in adults.

Stress or a tumour: An inquest in the UK has heard that doctors failed to diagnose that a 16 year old girl had a brain tumour and, instead, believed she was suffering from stress or her condition was related to a bulimic episode a year before.

Stopping chemotherapy: A UK mother of a three-year old daughter who has had her brain tumour since she was one year old decided before Christmas to stop her final cycle of chemotherapy so the daughter could enjoy what was anticipated to be her last Christmas. “Cancer has ruined every Christmas she has been old enough to know about but not this one”, the mother said. Comment – This mother displayed great courage. The choices in the brain tumour journey can be extremely challenging.

Dubai: An Indian guest worker suffering from a brain tumour and amnesia in Dubai was identified when his photo was posted to Facebook and his wife produced photo copies of his visa-endorsed passport. He was returned to Chennai in India and admitted to a hospital.

Brain shift: Researchers at the University of Western Australia and Harvard Medical School have developed a fast, intra-operative guide based on graphics processing units, that gives the neurosurgeon a better approximation of where tumour and healthy tissue are if there has been deformation of the brain during an operation.

Fraud: A UK man defrauded his own family and friends of thousands of pounds pretending that he had a brain tumour after going on the Internet and self-diagnosing his headaches to be a brain tumour. His brother unwittingly climbed peaks around the UK for a fund-raising effort. The fraudster shaved his head and eyebrows and claimed it was a result of chemotherapy. He was exposed when his worried family told his GP they feared he was about to die and the doctor said he was not receiving any treatment.

Recurrent gliomas: Scientists at the University of California San Francisco (UCSF) have discovered that recurrent gliomas share only half their mutations with the original glioma and that temozolomide, which is commonly used to treat the initial tumors, may amplify the genetic differences.

Wi-fi and brain tumours: A controversy has erupted in New Zealand in which a school has decided to switch off wi-fi in its junior classrooms after parents revealed concerns about radiation exposure. This followed the death of a ten-year old student from a brain tumour who was known to have slept with an iPod device beneath his pillow. His father then initiated a campaign against wi-fi hot spots requesting that internet be delivered via wired Ethernet cables. Comment – This controversy is very similar to that over mobile (cell) phones and brain tumours. This magazine commentary appears to be a useful summary of the evidence on the subject.

Company News:

To-BBB: The Dutch company to-BBB, which has a proprietary delivery method called G-Technology designed to overcome the blood-brain barrier, has entered a collaboration agreement with Chinese company Sihuan … to-BBB has also announced the publication of non-clinical results for 2B3-101 (glutathione pegylated liposomal doxorubicin) and brain tumours.

Bristol-Myers Squibb (BMS): In a rather arid environment for studies of recurrent glioma, BMS has notified the commencement in January 2014 of a study (CheckMate 143) for recurrent GBM involving nivolumab, nivolumab and ipilimumab, compared with bevacizumab. Judging by the information about the trial on the clinicaltrials.gov website the company could be envisaging the recruitment of participants from fourteen countries.

Celldex: Celldex appears to be making a determined effort to recruit newly diagnosed GBM patients in Europe to its Phase III study (Act IV) of its Rindopepimut (CDX-110) therapy. It is now up to 229 study locations with more European location details added in January.

e-Therapeutics: e-Therapeutics has announced that its Phase 1 trial for brain tumours of dexanabinol, which is a synthetic cannabinoid, will continue into 2014.

Isarna: Isarna (formerly Antisense pharma) has announced a licence agreement with Santaris Pharma to access its Locked Nucleic Acid (LNA) technology to further develop its next generation oligonucleotide product candidates. On 9 January Isarna also announced a Strategic Manufacturing Agreement with Sanofi to manufacture its antisense oligonucleotide compounds.

Apogenix: At the time of writing German company Apogenix GmbH was due to present encouraging results from its Phase II trial of APG101 involving recurrent glioblastoma patients.

Another vaccine: Scientists in the USA have embarked on a Phase II trial to discover if the HSPCC-96 vaccine, made from the patient’s own resected tumor by Agenus Inc, is safe and effective when administered with Avastin.

EORTC involves patient experts: The European Organisation for the Research and Treatment of Cancer (EORTC) will involve patient experts from now onwards in reviewing the English-language versions of the Patient Information Sheets and Informed Consent documents for all new EORTC projects. It is inviting patients and patient advocates to apply to be part of a patient expert group from which reviewers will be selected. Details of the move are contained here and here. Comment - This is a move that has been proposed by the IBTA and others in recent years. It should be replicated by the principal investigators for all pharma-initiated clinical trials and investigator-led trials originating within a country.

Thank you for all your continuing support.

Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569

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