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Al's Comment:

 This is from our friends at the IBTA

Posted on: 01/19/2013

IBTA E News January 2013

Dear Friend

Significant dates: 15 February 2013 is International Childhood Cancer Awareness Day and provides an opportunity to raise awareness about how brain tumours are rising to the top in statistical tables as one of the most lethal of all childhood cancers. 18 April 2013 is Ependymoma Awareness Day when organisers will be raising funds by using the butterfly symbol. The Danish brain tumour patient and caregiver group will be holding another awareness day (Hjernetumordagen) in Copenhagen on 23 April 2013.

UK brain tumour charity groups merge: Brain Tumour UK and The Brain Tumour Charity (formerly the Samantha Dickson Brain Tumour Trust) announced in January that as from March 2013 they will merge into one organisation and will retain the name The Brain Tumour Charity. Andy Foote will be  Chair, Neil Dickson Vice Chair, and Sarah Lindsell will remain Chief Executive. The new group will have 40 staff. There are two video presentations about the merger available here. Part of the motivation for the merger is the potential to increase brain tumour research funding.

Smaller radiation fields: Researchers at Wake Forest Baptist Medical Center in the USA in a retrospective study involving 161 GBM patients believe they have established that patients receiving radiation therapy with smaller margins do not do any worse than those with larger margins.

Translations: The American Brain Tumor Association now offers its patient education materials in Spanish, including its About Brain Tumors primer, for download from its website here. When the IBTA approached the National Comprehensive Cancer Network (NCCN) about the absence of any translation of the clinical practice guidelines for CNS tumors (see November E News) it was advised that NCCN would welcome being contacted by potential sponsors. Be that as it may, NCCN has now included a reference to the Novocure TTF device in its revised English-language Guidelines for CNS tumours which can be accessed here. Visitors to the IBTA's website will notice that we have now incorporated a "widget", courtesy of the National Cancer Institute in the US, which enables a search in either English or Spanish for easy to understand definitions of common cancer terms. Another recent enhancement to the IBTA website has been an updating by Chris Tse (one of the IBTA's advisors) of our comprehensive webpage of links to clinical trials. Please advise Chris if you know of any further additions.

Neon Roberts case: The case of seven-year old Neon Roberts in the UK, who has a medulloblastoma brain tumour, and whose mother initially opposed him receiving radiation therapy and took him into hiding (see December IBTA E News), has continued to receive extensive media coverage. A High Court judge rejected his mother's appeal and the boy commenced radiation treatmenton 10 January. Meanwhile, in a similar context, the parents of a young man with an inoperable brain tumour have told of their anguish when faced with their son's opposition to traditional therapies and a desire for unconventional therapies. In this case the father is a Professor of haemato-oncology and the mother is a former nurse.

Scorpion toxins and illuminating brain tumours: This is a link to a short video which describes the development of a process whereby scorpion toxins are combined with molecules that glow in near-infrared light and make tumour cells visible to the neurosurgeon. Trials in humans are planned for late 2013. Meanwhile, the widely distributed USA Today magazine contained asupplement in its December issue which included a reference to the 5-ALA tumor fluorescence technique which also lights up tumor cells in the brain. The item quoted Dr Michael Vogelbaumfrom the Cleveland Clinic, who is conducting one of the clinical trials for 5-ALA in the USA.

Death of Walter Newman: Walter S Newman of San Francisco died on 8 December aged 91. When his son Robert died from a malignant brain tumor Mr Newman co-founded and became President of the National Brain Tumor Foundation, which is now known as the National Brain Tumor Society (NBTS).

Diesel fumes and childhood brain tumours (CBT): Researchers in Western Australia have found a connection between exposure to diesel fumes by mothers and fathers and the development of a brain tumour in their child. They wrote: "Increased risks were observed for maternal exposure to diesel exhaust any time before the child's birth (OR 2.03, 95% CI 1.09–3.81) and paternal exposure around the time of the child's conception (OR 1.62, 95% CI 1.12–2.34). No clear associations with other engine exhausts were found. Our results suggest that parental occupational exposure to diesel exhaust may increase the risk of CBT."  The study involved parents of 306 cases and 950 controls.

Massage: A study by ST Keir of Duke University (USA) and published in the BMJ Supportive and Palliative Care journal found that distressed brain tumour patients who received eight massages over a four-week period experienced significant improvement in their distress level.

Racoons and brain tumours: Veterinarians in the USA have observed an increase in the number of dead racoons who had brain tumours. All the racoons had a virus known as polyomaviruswhich does not spread to other animals or humans. The researchers are now trying to work out if the brain tumours were triggered by the virus or other variables.

Fusion gene and GBM progression: A Finnish researcher and colleagues have discovered through a mouse model that the FGFR3 and TACC3 genes in human GBM samples undergo fusion and the protein produced by this fusion gene promoted tumor growth and progression.

Trans sodium crocetinate (TSC): The US Food and Drug Administration (FDA) has granted Orphan Drug Designation to Diffusion Pharmaceutical's TSC drug for the treatment of metastatic brain tumors. The same drug had previously been granted Orphan Drug Designation for treating primary GBM, for which a Phase II trial is now enrolling.

Chordomas: Joshua Sommer, the 24 year old Executive Director of the Chordoma Foundation has been selected by Forbes magazine in its list of 30 individuals under age 30 who are transforming science and healthcare for his role in jumpstarting the field of chordoma research. Although the magazine describes Chordomas as a "rare bone cancer", other sources categorise them generally as "sarcomas", and even as CNS tumours. The Central Brain Tumor Registry of the US (CBTRUS), which is the authoritative delineator of what are regarded as CNS tumors, includes them in its tables, which were formulated in conjunction with expert neuropathology advice.

New drug targets: Researchers at the University of Pittsburgh (USA) have identified more than 125 genetic components in a chemotherapy-resistant brain tumor derived cell line that might lead to appropriate adjuvant chemotherapy drugs. These targets could make the tumor more sensitive to temozolomide. The research was supported by grants from the NBTS and the National Institutes of Health (NIH).

Chartrounds: Many readers will have heard of "Grand rounds". There is also a new on-line scheme called "Chartrounds" which has been supported by the Conquer Cancer Foundation (USA). The Foundation explains: "Doctors present difficult cases and the treatment plan that they are considering and then get feedback from the expert and the other attendees during a one-hour online discussion ... the initial pilot phase of the program was to just focus on the treatment of breast cancer with radiation. Two years later, Chartrounds has grown immensely and now covers both medical and radiation oncology for 10 different types of cancer." It also includes  participants from another 15 countries apart from the USA. The service's specialist for radiation oncology for CNS tumors is Dr Dennis Shrieve from the University of Utah but there is no specialist medical oncologist for CNS tumors, however, the IBTA is aware that the Society for Neuro-Oncology enables its members to post queries about difficult cases to other members for their comment and feedback.


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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