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IBTA E-News July 2010

Posted on: 07/18/2010

IBTA E-News July 2010
If you are having difficulty reading this E-News please go to the Web version.
Dear Friend of the International Brain Tumour Community
Displays and conferences:
The IBTA was busy during June and July exhibiting at and attending conferences (ASCO, ISPNO, BNOS, BTUK – Brain Tumour UK) and meeting personally with some of our supporters in Europe (Norway, Sweden, UK, Lithuania). This is a link to a report of our attendance at ASCO and ISPNO and visits to European groups. This is a general overview of the conference organised by the British Neuro Oncology Society.
The IBTA plans to have a display at the World Cancer Congress in Shenzhen, China, in August. Kathy Oliver will be speaking at two conferences in Belgium and Denis Strangman will be speaking at an international nurses’ conference in Singapore, all in September.
IBTA magazine: Some 8,000 free copies of the IBTA magazine “Brain Tumour” have been distributed to contacts in 83 countries. The distribution process extended over eight weeks. We have received some good feedback about the magazine. If you requested a copy and have not yet received it, or if you wish to receive a copy, please fill in the form here.
Temozolomide: Cancer Research UK (CRUK) has produced a 4-minute on-line video of Professor Malcolm Stevens talking about how his research team discovered temozolomide with the help of funding from CRUK’s predecessor, Cancer Research Campaign. Interestingly, CRUK sold the patent rights to Schering-Plough (now Merck/MSD) and in later years benefited from substantial royalty payments which, in turn, formed the basis of new cancer research funding but not necessarily of brain tumour research. Some of CRUK’s achievements during this period cover breast, pancreatic and hereditary cancers. In 2008 its supported researchers did discover a mutation in a DNA repair gene which may increase the risk of developing meningioma and it has funded general research intended to benefit all cancers.
Generic temozolomide: The UK Medicines and Healthcare products Regulatory Agency (MHRA) has advised that Hospira UK Limited has recalled certain batches of Temozolomide Hospira capsules due to reports of “broken capsules and leakage”. There was a similar announcement relating to Sandoz Ltd for its temozolomide capsules.
Clinical trials registries: IBTA advisor Chris Tse has created a single webpage listing of searchable clinical trial registries which may be of use to patients and caregivers in particular when seeking to identify what trials are taking place in the brain tumour area. Please visit the first draft here and advise Chris ( if you are aware of other on-line searchable resources that should be included. To make searching easier we are looking for a program that will incorporate the separate hyperlinks and enable a global search with only one entry point. Any suggestions? We note that protocol-related information in the EudraCT database (the European clinical trials database) will become publicly accessible in September 2010.
Stem cells: The European Medicines Agency has warned against unregulated stem-cell medicinal products being offered to patients. The warning has been supported by EURORDIS, of which the IBTA is a member. There have been reports of brain tumour patients travelling to India to receive such products even though they are of unproven efficacy.
What is an NCD? Readers are likely to hear a lot about “NCDs” in the future. The acronym refers to “non-communicable diseases”, of which cancer is an example, diabetes and heart disease being others. A resolution adopted by the UN General Assembly has called for an NCD summit in September 2011 to focus attention on the problems caused by these diseases, particularly in developing countries.
The challenge for the international brain tumour community is to ensure that organisations such as the World Health Organisation and the cancer control bodies acknowledge that in regard to some cancers, such as brain tumours, prevention and population screening for early detection are totally irrelevant. While the other general aims (of screening etc) are eminently desirable for other cancers we also wish to see greater support for patients and families when a brain tumour manifests itself. Please convey this viewpoint to the cancer associations with which you are involved. Here is a link to a WHO promotional video on You Tube which illustrates the current emphasis on prevention and “avoidance”.
SEGAs: Patients with subependymal giant cell astrocytomas (SEGAs) will be interested to learn that Novartis announced trial results of a promising new therapy at ASCO.  A company press release states that: "...results from a Phase II study show Afinitor ® (everolimus) tablets is the first medication in a clinical trial to decrease the size of subependymal giant cell astrocytomas (SEGAs), benign brain tumors associated with tuberous sclerosis (TS)[1],[2]. In this study of 28 patients presented today at the 46th American Society of Clinical Oncology (ASCO) annual meeting in Chicago, 75% of patients experienced a reduction of 30% or greater in the size of their brain tumors from baseline to six months (p<0.001)[1]."  For the entire press release please see     The Tuberous Sclerosis Association, UK is an IBTA supporter - see their website at
Medulloblastoma: This is a link to a review of a book by a young medulloblastoma survivor, Dainere Anthoney, based on her blogspot. Dainere is a gifted writer and is only twelve years of age. The book conveys an insight into what it is like to be a patient receiving the St Jude MB03 protocol.
Ellie Othick-Bowmaker, a British pediatric brain tumour patient, tragically passed away on Valentines Day 2010 aged just 14.  Ellie managed to help raise over £25,000 for charities. Ellie's bravery inspired the staff and students at Scalby School to record the songs "Over the Rainbow" and "Wonderful World", backed by a beautiful tribute video, which you can see on YouTube. The song is available to download from Amazon (UK only) and ITunes (requires a sign up). “Over the Ranbow”, made famous again in recent years by Israel "IZ" Kamakawiwo’ole, whose version featured in the episode of the brain tumour death of fictional TV character Dr Mark Greene in the “ER” series, is emerging as a popular one in the brain tumour world. Ellie’s mum Heather Othick has established Ellies Fund ( which operates under the umbrella of Ali’s Dream - a founding member of Brain Tumour Research (
PET (Positron Emission Tomography) and glioma: The Medical Services Advisory Committee has recommended to the Australian Minister of Health the continued reimbursement of a single FDG PET/CT study for patients for the evaluation of suspected residual or recurrent malignant brain tumour after definitive therapy who are considered to be candidates for further active treatment but did not support funding for initial diagnosis or grading. The committee’s 134 page report, which is based on a recent worldwide review of primary studies, is downloadable in PDF format from here.
Clinical Practice Guidelines: As part of a general updating of its clinical practice guidelines the European Society for Medical Oncology (ESMO) has published updated guidelines for high grade malignant glioma which are accessible in full from here. The authors are Stupp, Tonn, Brada, and Pentheroudakis.
CERN: CERN stands for the Collaborative Ependymoma Research Network The mission of CERN is to develop new treatments for ependymoma thereby improving outcomes and care. The Foundation also has an outreach component that seeks to promote awareness and a better understanding of this rare form of brain tumor. It has a very useful website here to which it has recently posted six information videos which can be accessed here.
Turkey: Nihat Karaoglu advises that a new brain tumour patient support group with almost 100 members has been established in Turkey. Nihat has a website in Turkish here. Nihat  writes: “Another issue is because the patients are left alone and nobody looks after them, they become preys to quackers who sell miracle cures. These quackers operate quite comfortably and legally and they even try to get the patients (to) quit the "scientific" treatments just to be able to sell their own. Nobody fights against them as the patients (even the duped) are just alone or busy with their deadly problems.” It appears that the need for a strong patient advocacy group in Turkey is overdue.
Meat and gliomas: A UK-based study involving US collaborators has found “no suggestion that intake of meat, nitrate, nitrite, or nitrosamines is related to the risk of glioma”. As the authors state, the hypothesis that they were related had been circulating for decades.
Thank you for 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
The International Brain Tumour Alliance is a not-for-profit, limited liability company registered in England and Wales, registered number 6031485.  Registered office: Roxburghe House, 273-287 Regent Street, London W1B 2AD, United Kingdom.  All correspondence should be sent to the Co-Director’s address above, not to the registered office.


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