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[Editor's Note: This message is not a service of the Musella Foundation... it comes from the International Brain Tumor Association. I am just passing it on to you!]
IBTA E NEWS MAY 2011
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Dear Friend
Magazine: The IBTA’s magazine “Brain Tumour” has been printed in the UK and is ready for free distribution in 83 countries, pending the achievement of our overall fund-raising targets and no volcanic eruptions in Iceland, which can affect European freight forwarding as it did last year. This issue, which runs to 132 pages, has over 180 separate items, including 31 interviews and articles by brain tumour health professionals and researchers and 25 articles written by brain tumour patients, caregivers and patient advocates. There are also six reviews of brain tumour-relevant publications and 29 reports of awareness-raising activities held last year. If you received a copy of the 2010 edition in the post then you are on our database. If not, please visit here and complete the request form for your free copy. Copies will also be available from the IBTA slot in the ASCO-sponsored Patient Advocacy booth (No 5005) at the ASCO conference in Chicago 3-7 June. The booth is just inside the main entrance doors to the Exhibit Hall.
ASCO: 127 CNS abstracts for the American Society of Clinical Oncology (ASCO) Conference are now available on-line here. They cover most aspects of current brain tumour research, including work with Avastin. A number of presentations will include updated detail to be released at the conference itself.
Dr David A. Reardon: Dr David Reardon from the The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center (USA) visited Australia recently on a lecture tour and mentioned that from 1 July he will be located at the Dana-Farber Cancer Institute in Boston, Massachusetts. He is currently working on a proposed new trial combining Avastin with another therapy.
Fluorescence-guided neurosurgery: The IBTA is keen to ensure that all brain tumour patients obtain the best possible resection of their tumour. There are several ways of ensuring this, including the use of intra-operative MRIs but another method with a lower price tag and a more specific purpose is the use of substances that identify the tumour cells in a fluorescent colour which can be seen under special lights and with a special operating microscope. We have been interested to learn that the German-based microscope manufacturing company Zeiss produced a system in 2007 called “ Blue 400” designed for this process.
Trials of the fluorescent substance and its use have been initiated in the USA and a trial combining the process with carmustine wafers is planned for the UK. We have no connection with Zeiss but are always keen to draw attention to promising therapies and processes which have the potential to benefit patients.
Meanwhile, researchers from the Tata Memorial Centre, Mumbai, India, have called for the re-introduction of the widely-neglected intra-operative ultrasound (IOUS) in brain tumour and spinal cord operations: “The IOUS is a very useful tool in intraoperative localization and delineation of lesions and planning various stages of tumor resection. It is easy, convenient, reliable, widely available, and above all a cost-effective tool. It should be increasingly used by neurosurgeons in the developing world where costlier intraoperative localization and imaging is not available freely.”
GBM cells in space: Scientists sent glioblastoma cells on the Endeavour Space Shuttle launched on 16 May to study the combined effect of microgravity and ionizing radiation on GBM cells. According to the Moorhead State University website “The overall experiment, called GlioLab, is a joint project between Kentucky Space/EI, led by Morehead State University (MSU) Space Science Center in Kentucky and the GAUSS-Group of Astrodynamics at the “Sapienza” University of Roma. The launch and return of the payload is through KS’s strategic partner NanoRacks LLC.”
EORTC meetings: The EORTC Education Office is conducting a “One-Day Introduction to EORTC Trials” in Brussels on 9 September 2011. Further information is available here. The brain tumour sub-group of EORTC is very active in the area of international brain tumour clinical trials. In the forthcoming issue of the IBTA magazine we interview Dr Brigitta Baumert, secretary of the EORTC brain tumour group. The EORTC is also holding its 2nd Quality of Life Symposium at Brussels during 7-9 September.
Rhabdoid brain tumours: Scientists at the Albert Einstein College of Medicine of Yeshiva University in the USA have identified the Aurora A gene as a possible target for treatment of these very rare tumours which mostly affect children.
Hong Kong: Dr Danny Chan reports that “Temozolomide will be included in the ‘Safety net’ system in HK. Those (after financial assessment) not able to afford the drug will be funded by government. This is a small but major step for glioma patients. Of course, we should continue the work to make it "free" and accessible to all patients”. This is a reminder that what is now regarded as the standard of care in many countries is not necessarily supported by all official agencies and that advocacy on behalf of patients is a never-ending process.
Chris O’Brien: Professor Chris O’Brien was an internationally known head and neck surgeon who developed a glioblastoma brain tumour and died in June 2009. In one of those tragic quirks of fate his otherwise fit and healthy 29 year old son, Christopher Adam O’Brien, died from a seizure on 30 April, after recently being diagnosed with epilepsy.
Lithuania: Ugnius Smalskys from the Kartu lengviau brain tumour support group advises: “The community "Kartu lengviau" was awarded the "Wing of Goodness" 2011 sculpture. Lithuanian LNK TV channel meets every spring with the biggest charity event - the journalistic and music telemarathon, called "The day of Goodness". During "The day of Goodness" Lithuanians are encouraged to donate money by calling short numbers or by transferring funds from their bank accounts. On this year's "The day of Goodness" event on April 22nd the community "Kartu lengviau" was awarded the "Wing of Goodness" 2011 sculpture. "Kartu lengviau" is the only community in Lithuania which provides information and social support for patients with brain tumours and their relatives.” Photos of the presentation can be seen here.
Clinical Practice Guidelines: A 49-page PDF of the US National Comprehensive Cancer Network (NCCN) “Clinical Practice Guidelines in Oncology for Central Nervous System Cancers” can be downloaded from here. Deneen Hesser from the American Brain Tumor Association served on the drafting committee. The Australian “Clinical Practice Guidelines for the Management of Adult Gliomas: Astrocytomas and Oligodendrogliomas” and an associated 122-page Consumer Guide launched on 13 May can be downloaded separately from this webpage. IBTA Chair Denis Strangman served on the drafting committee for those Guidelines.
UK and US Statistics: In figures released by Cancer Research UK in April 2011 brain and central nervous tumours accounted for 4,785 cases in 2008 and 3,674 deaths in 2007. UK brain tumour charities have argued that the official statistics underestimate the true incidence. In February 2011 the Central Brain Tumor Registry of the United States (CBTRUS) released its report on primary brain and central nervous statistics in the US during 2004-2007 which can be downloaded from here.
Rare diseases and the Internet: In a study by the Pew Internet & American Life Project researchers found that the most prolific Internet users are those with rare diseases and those caring for someone with one: “Some of the most notable interactions involve people who meet online for the first time. There were numerous examples of these powerful long-distance connections in our online survey of patients and caregivers who take part in rare-disease communities.”
Some clinicians believe that the answer to this heavy involvement by patients and caregivers in the Internet is to develop a set of “Doctor-approved” websites which can guide the users but a deeper involvement is necessary in this fast moving environment in which Internet-savvy clinicians should enter email discussion lists and participate fully with sympathetic back up by their colleagues and their professional insurance organisations. Many clinicians are extremely surprised when they obtain a glimpse of the international interactive involvement of some brain tumour patients and caregivers.
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-Directors address above, not to the registered office.