E News September 2010
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Dear Friend of the International Brain Tumour Community
Neurosurgical trainees: The IBTA recently donated copies of its publication "The First Documented, Modern-Day Brain Tumour Surgery for a Glioma" to the European Association of Neurosurgical Societies' training course on brain tumours in Halkidiki, Greece, due to take place between 26-30 September. Each delegate to the course will receive a copy of the IBTA's booklet, which tells the story of British surgeon Rickman John Godlee's landmark operation on young brain tumour patient John Mitchell (aged 25) on November 25, 1884 in London, UK. A limited number of copies of this booklet are still available from the IBTA. See www.theibta.org
Dr Warren Mason: During a quick visit to the national capital Canberra, as part of visits to several hospitals in Australia, well-known Canadian neuro-oncologist Dr Warren Mason made several interesting points: There are many obstacles to the clinical application of tumour MGMT promoter methylation status. Assays are sometimes unreliable and results from different techniques can vary. Tumour methylation status can be heterogeneous, and can change at progression. The impact of methylation status on patient management and clinical decision making are unclear. He believes that IDH1 and IDH2 mutations are exciting new markers for gliomas, and have the potential for playing a role in patient management. He said that the results of the EORTC low grade trial has completed its accrual target and results may be available in 3 years and that the results of the Recentin Phase III trial are likely to be reported at ESMO and SNO.
Clinical Research: IBTA Co-Director Kathy Oliver recently delivered a presentation in Brussels to a meeting called by the European Organisation for Research and Treatment of Cancer (EORTC) to discuss the future of independent academic clinical research in Europe. The text of Kathy’s presentation, in which she stated that “patient involvement in the early design of clinical trials is crucial”, is available here. Many brain tumour centres throughout the world participate in clinical trials initiated by EORTC.
Palliative care: Aline Nixon and Aru Narayanasamy in a study of UK brain tumour patients published this year, suggest that neuro-oncology patients may have unique spiritual needs compared to other patients with cancer “as they are not only facing a threat to their life but also to their personality and a potential ‘loss of self’.” The authors were assisted by well known consultant neuro-oncologist Dr David Levy (now in Canada) and nurse specialist Ms Helen Lee in recruiting participants for the study. IBTA Chair Denis Strangman referred to their research in a presentation on the “Existential and Spiritual Needs of Terminally Ill Patients” to the 10th Asian Regional Congress of CICIAMS (International Catholic Committee of Nurses and Medico-Social Assistants) held in Singapore during 3-5 September.
Awareness Week and World Walk: We continue to upload reports of proposed and completed awareness-raising events to the IBTA website, the latest being a report of the activities of our colleagues in Zimbabwe. There are now more than 140 organisations worldwide who support the International Brain Tumour Awareness Week (31 October – 6 November) and the Walk Around the World for Brain Tumours.
SIOP: The 42nd Annual Congress of the Society of Pediatric Oncology (SIOP) will be held in Boston during 21-24 October and one of our supporters from Boston has kindly agreed to deliver copies of the IBTA’s “Brain Tumour” magazine for collection by those participants who may have an interest in the subject and have not yet received a copy. There are several sessions specifically on brain tumours.
Childhood Cancer Month: President Barack Obama has proclaimed September as Childhood Cancer Awareness Month. He stated: “While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15.” A further point to make is that in the USA, Canada and the UK brain tumours have now overtaken all leukaemias as the leading cause of paediatric cancer mortality in that same age group. [For the USA data see this PDF document.]
EANO: The Meeting of the European Association of Neuro-Oncology (EANO) will be held at Maastricht in the Netherlands during 16-19 September. The IBTA will exhibit (Booth No 4) at the Conference and will have copies of its magazine available. Dutch and German brain tumour patient groups will also be present. The IBTA has invited other European patient groups that it is in contact with to supply a small number of copies of their basic handouts to be made available from the IBTA booth to relevant clinicians.
China: The IBTA had a display at the World Cancer Congress held in Shenzhen, China, during 18-21 August. A report by IBTA Chair Denis Strangman can be accessed here. A topic that featured during the Congress proceedings is the proposed UN Summit on Non-Communicable Diseases (NCDs) to be held in September 2011. The IBTA has concerns that the Summit will focus mainly on efforts to achieve prevention of these diseases (which includes cancer) but many cancers, particularly brain tumours, cannot be prevented. While prevention is important there should also be a focus on support and research.
Rare cancers: The European Society for Medical Oncology (ESMO) has announced that Mr. Robert Schaefer, Berlin, has been appointed to run the European Action Against Rare Cancers (EAARC) Secretariat. ESMO said in a statement that because of the importance of this initiative to ESMO, Mr. Schaefer will work directly with Alan Howard, ESMO Chief Executive Officer. The IBTA is a partner in this project which is supported by Novartis together with several other corporate organisations. ESMO is to be congratulated because we know of no other medical oncology group that allocates such a high priority to rare cancers, among which brain tumours occupy an important place.
David Bailey: Long-time brain tumour survivor, singer and songwriter David M Bailey, who was featured in the IBTA's magazine this year, has entered hospital in his home state of Virginia.
GliomaEd: The excellent GliomaEd website contains two further educational items of interest to clinicians and patients alike. The first is “Novel Applications for Bevacizumab and Other AI Agents” and the latest is “Anti-EGFR Therapies in Malignant Gliomas: Clinical Outcomes and Predictive Markers”. The second topic is not listed on the GliomaEd website at the time of writing but should be accessible via this hyperlink. Registration is required.
Celldex and Pfizer: Pfizer has decided to terminate its brain tumour vaccine partnership with Celldex Therapeutics. This means that Celldex will regain full worldwide rights to rindopepimut (CDX-110) which targets EGFRvIII in glioblastoma.
Cerepro: According to a news report Ark Therapeutics “will continue efforts to out-license the brain cancer drug Cerepro, the gene-based therapy rejected by European regulators earlier this year.”
Belgium: IBTA Co-Director Kathy Oliver attended a brain tumour roundtable event in Brussels, Belgium on 11th September. The theme of the meeting - which was organised by the Oncology Centre Antwerp and Werkgroep Hersentumoren (WGHT - "Study Group Brain Tumours") - was "Treatment and Support of Brain Tumour Patients and their Families". Kathy presented on "The Brain Tumour Patient: What's Important?". Frank Boeye, President of WGHT, said that the meeting had been organised in order to formulate a consensus about brain tumour treatment in Belgium.
Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org
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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