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IBTA E News October 2011

Posted on: 11/08/2011

[Note: this has nothing to do with the Musella Foundation - we are just passing it along because it may be of interest to you]


IBTA E News October 2011

Dear Friend

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Awareness Week and World Walk:
More than 100 brain tumour and cancer-related organisations from around the world have joined in support of the IBTA’s International Brain Tumour Awareness Week and the Walk Around the World for Brain Tumours. The Awareness Week commenced on 30 October and it and the World Walk conclude on 5 November. Organisers of activities should send photos and reports to the IBTA ( for consideration for inclusion in the 2012 IBTA “Brain Tumour” magazine. Those who do not receive their free copy of the 2011 issue of the IBTA magazine by the end of November should complete the request form here.

Arianne Payne:
Following the death of IBTA co-director Kathy Oliver’s son Colin Oliver from a brain tumour on 27 August, the IBTA community suffered another tragic loss on 28 September with the death from a brain tumour of Arianne Christine Payne, the 43 year old sister of IBTA senior advisor Sally Payne. See tribute here.

A recent study from a team of researchers at the Karolinska Institutet (Sweden) which was published in the Journal of Clinical Investigation found that a large proportion of primary medulloblastomas and medulloblastoma cell lines are infected with a virus known as human cytomegalovirus (HCMV). The Karolinska authors state: “The antiviral drug valganciclovir and the specific COX-2 inhibitor celecoxib prevented HCMV replication in vitro and inhibited PGE2 production and reduced medulloblastoma tumor cell growth both in vitro and in vivo. Ganciclovir did not affect the growth of HCMV-negative tumor cell lines. These findings imply an important role for HCMV in medulloblastoma and suggest HCMV as a novel therapeutic target for this tumor.” Drs Cynthia Hawkins and Sidney Croul have written an accompanying commentary

Promising therapies and commercial developments: This is a link to the videocast of a discussion within the (US) National Institutes of Health's Recombinant DNA Advisory Committee about the TOCA 511 (a retroviral replicating vector) therapy for use in recurrent glioblastoma. Please note that some browsers may require the Windows Media Player plug-in to view the video. The committee proposed a set of recommendations for alteration of the trial protocol and patient consent information. The majority of these concerned the implementation of safety measures to prevent spread of the virus outside of the intended target, not just in the patient but also with the possible infection of family members and healthcare workers. However, one committee member wondered whether they might be doing patients a disservice with the proposed recommendations. He commented that if he were a patient facing death and he had a chance at something which would prolong his life, he would probably go for it.

MagForce AG announced on 10 October that a patient with recurrent glioblastoma was treated with its NanoTherm therapy at the University of Giessen and Charité University Medical Center Berlin in an interdisciplinary cooperation, and that the first treatment approvals have been received from German state insurance companies.

In early October Celtic Pharmaceutical Holdings L.P. announced the completion of enrolment into a maximum dose tolerance study of investigational product Xerecept (corticorelin acetate) in pediatric patients who were dependent on chronic Decadron (dexamethasone) dosing due to peritumoral brain edema associated with cerebral tumors.

IsoRay Inc has announced that the US FDA has cleared its GliaSite radiation therapy system for the treatment of brain tumours. The system is a balloon catheter device which delivers a liquid radiation source (Cesium – 131).

The pharmaecutical company Eisai has entered into a drug-discovery research collaboration with the Johns Hopkins University to develop proprietary small-molecule drugs for a range of brain conditions, including brain tumours.

European Multidisciplinary Cancer Congress in Stockholm, Sweden (ECCO 16, ESMO 36, ESTRO 30): The IBTA had a presence at this conference where there were almost 16,000 delegates from 116 countries. The Proffered Papers session on CNS tumours included a range of topics, some examples of which were: hearing preservation after low dose radiosurgery for acoustic neuroma; the Phase II Temofrac trial for concurrent three-times daily ultrafractionated radiation and temozolomide for newly diagnosed inoperable glioblastoma and a Phase II study of bevacizumab and fotemustine for recurrent glioblastoma. A scientific session on Optimising Treatment in Gliomas focussed on the challenges and pitfalls of targeting angiogenesis in gliomas, on translational and clinical aspects and on radiotherapy and molecular biomarkers. Over 50 CNS posters covered a wide range of studies on combination therapies, approaches to treating brain metastases, brain tumours in the elderly, and a large number of studies on malignant glioma. The 786-page abstract book can be accessed here as an HTML document but it can take a while to fully download.

IBTA Co-Director Kathy Oliver presented at the Patient Advocacy and Ethics Track on “The Challenges of Rare Cancers” and co-chaired that session with Mr Robert Schaefer, Senior Project Manager of Rare Cancers Europe. A webcast of Kathy’s presentation can be seen here. Kathy participated as a panellist in an Oncopolicy Session on Inequalities in access to cancer drugs in Europe. She also received an award from the European Association of NeuroOncology (EANO) for her work on behalf of the IBTA in raising the profile of neuro-oncology at the European political level and for helping to ensure that scientific and governmental organisations understand what is required of them by constituents in the brain tumour patient and caregiver community.

Austria: On 21 July 2011 Austrian neuro-oncologists officially founded the Austrian Society for Neurooncology which has a website (in German) here. The President is Dr Josef Pichler.

Meetings and dates: The Annual Scientific Meeting of the Society for Neuro Oncology (SNO) will be held in Orange County, California, during 17-20 November. The IBTA will have a presence at the meeting. The Central New Jersey Regional Brain Tumour Conference is scheduled for 29 October at the JFK Conference Centre, Edison. A praiseworthy feature is a two-hour “sharing” meeting on the night before. Provision for such opportunities is often neglected when conferences are organised for patients and caregivers. The National Brain Tumor Society is organising a Summit in Philadelphia during 3-6 November, with a reception and networking opportunity for participants beforehand. The abstract deadline for the ISPNO conference being held in Toronto during 24-27 June 2012 is 15 February 2012. Copies of the IBTA magazine were made available for the 43 SIOP meeting currently being held in Auckland, New Zealand. The Annual Conference of the Brain Tumor Epidemiology Consortium will be held in Montpellier, France, during 30 June – 3 July 2012. The Excellence in Oncology 2012 Conference to be held in Istanbul, Turkey, during 22-25 February 2012, will include a one-hour session on CNS tumours with Patrick Wen, Evanthia Galanis and David Reardon as presenters. The South African Brain Tumour Foundation will have a presence at the Cape Town meeting of the World Society for Stereotactic and Functional Neurosurgery during 20-23 November. Kathy Oliver will be speaking at a brain tumour conference in Cyprus in November and Denis Strangman will be speaking at a brain tumour forum in Melbourne on 2 November. The 37 ESMO Congress will be held in Vienna during 28 September – 2 October 2012, the ESTRO 31 conference in Barcelona during 9-13 May 2012, and the 17 ECCO / 38 ESMO / 32 ESTRO meeting in Amsterdam during 27 September – 1 October 2013.

Hospitalisations: When illustrating the comparative nature of the burden incurred by brain tumour patients (and associated health care costs) one useful indicator is the average length of stay as a patient in hospital. A recent study by the Australian Institute of Health and Welfare showed that while brain tumours rank sixth in hospital palliative separation rates for primary cancers, the average length of palliative care separations where brain tumour is the principal diagnosis is almost three weeks compared to the average for all cancers which is two weeks.

Mobile phones and brain tumours: The debate continues with the publication and open access availability in the British Medical Journal of an update of the Danish cohort study which provides “little evidence for a causal association”.

Media exaggeration: In early October sensationalist reports in the media, supposedly based on a Lancet Oncology Commission report, included suggestions such as “Don’t give out cancer drugs if it’s just to extend life: Treatment costs can’t be justified, say experts”. An extensive reading of the more than 50 pages of the report has failed to identify the original source but there are comments in the report that could lend themselves to this interpretation. More significantly, no attempt has been made publicly by the authors or the journal to contradict the misleading headlines. This is one reason why there is a need for informed brain tumour advocacy: to counter-balance those who are all too ready to apply crude cost benefit analysis to peoples’ lives.

BUPA and brain tumour scans: BUPA is an international health insurance company with over 800,000 members in 190 countries. A meningioma patient in the UK discovered that the company would not approve follow-up scans to monitor her tumour because they defined it as benign, whereas they did cover ongoing monitoring for malignant tumours. An investigation by a UK newspaper columnist has found that BUPA changed this policy in February 2010 and updated its benefits to include an annual MRI or CT scan for five years following diagnosis of a benign brain tumour.

Some so-called “benign” brain tumours can be life-threatening and it is probably best for brain tumour advocates to use the term “non-malignant” so as to avoid the connotations and policy implications that flow from use of the word “benign”. This approach is canvassed in a forthcoming handbook to be released in November by the Brain Tumour Foundation of Canada.

Resources: The US-based Patient Education Institute has an 83-slide presentation on brain tumours which can be accessed via the US National Library of Medicine. Despite being written from within a general cancer context it could be very useful as a resource for newly diagnosed patients and their caregivers. There appears to be a requirement to obtain permission to create a permanent link to it.

Ependymomas: German scientists who are involved with a large molecular biological analysis of ependymoma brain tumours have been able to define two distinct subgroups of ependymoma which differ both genetically and clinically.

DIPG: The UK-based Katie McKerracher Trust has produced a 50-page web-book on “Diffuse Intrinsic Pontine Gliomas – Questions, Answers and Thoughts” which could be helpful to parents of newly-diagnosed children with this type of tumour.

Meningiomas: The Chair of the Radiation Therapy Oncology Group Phase II trial RTOG 0539 involving observation for low-risk and of radiotherapy for intermediate and high-grade meningiomas is rather excited at the accrual success to date and has expressed optimism at achieving accrual targets for Group III (high grade) by May 2012. (See Summer 2011 newsletter).

Zofran: Zofran (ondansetron) is widely used by cancer and brain tumour patients as an anti-nausea drug. The US Food and Drug Administration is looking closely at the drug and its generics to check its effect on the electrical activity of the heart.

Temozolomide Sun: The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has approved a marketing authorisation for this generic version of Temodal.

Movie depictions of people with brain tumours: British actress Julie Walters is said to be in line for an Emmy Award on 21 November for her television role as Northern Ireland Government Minister Mo Mowlam who disguised the severity of her brain tumour which was only revealed after her death. The IBTA based a patient and caregiver survey around this subject which attracted 350 responses and which were analysed in the 2010 edition of “Brain Tumour” magazine. Meanwhile, up and coming young actress Mia Wasikowska plays a person with a brain tumour in the recently-released film “ Restless”. The film has received mixed reviews. People in the brain tumour community will no doubt be interested in the “accuracy” of the portrayal and its likely impact on viewers’ perceptions.

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-Directors address above, not to the registered office.


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