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IBTA E-News May 2010

Posted on: 05/18/2010

IBTA E-News May 2010
If you are having difficulty reading this E-News please go to the Web version.
Dear Friend of the International Brain Tumour Community
IBTA Magazine: Our 2005-2010 anniversary magazine has expanded from the planned 88 pages to112 pages, with items from brain tumour clinicians, neurosurgeons, survivors, caregivers, support group organisers, and others. It is an attractive colour publication (see a PDF of the cover here) designed by UK graphic designer Megan Hedges and through the generosity of our funding organisations it is now on its way (either from a UK, French or Spanish airport - depending on volcanic ash clouds!) to more than 4,200 contacts in 79 countries, including the 700 people who responded to the recent Zoomerang survey and advised us of their postal address and the address of institutions to which  it should be sent. 500 copies will also be shipped for distribution at the ASCO conference (see below).
If you do not receive a copy within the next month please contact: and supply your postal (land) address. Some recipients who are due to receive multiple copies for distribution to patients and caregivers may receive two postings - an early single copy and later a package/box with multiple copies. Additional multiple copies are available (depending on supplies) on payment of the freight cost from the UK to your country. The magazine is provided free.
Conferences: The IBTA plans to have a presence at the ASCO (Chicago, June), ISPNO (Vienna, June) and BNOS (Glasgow, June) conferences. Please make yourself known to the IBTA representatives. At ASCO the IBTA will be located within the ASCO-sponsored Patient Advocacy Booth (Number 5005). ASCO attendees can collect a copy of the IBTA magazine from there.
Most of the abstracts being presented at ASCO will be posted publicly on at 6 p.m. EDT 20 May 2010. We understand there is a late-breaking  abstract regarding the NovoCure TTF device which will be presented at 5.15 p.m. on 5 June by Dr Roger Stupp. Dr Stupp made some interesting comments about the device when speaking at COSA last year, which were reported in the IBTA E-News at the time.
Patients Rights: The IBTA has printed in a handy pocket-format the 17-point Brain Tumour Patients Charter of Rights, which is also available in the forthcoming IBTA magazine. Supplies are available for distribution at patient and caregiver conferences and workshops. It appears that its development is not before time. A recent case examined by the New Zealand Health and Disability Commissioner found that a District Health Board had infringed the rights of a female brain tumour patient in her mid-twenties by delaying her access to an MRI. The Commissioner said the Board failed to provide an appropriate standard of care and breached two rights of the Health and Disability Code - the right to services of an appropriate standard and the right to be fully informed.
Paediatric diagnosis: The Children’s Brain Tumour Research Centre at Nottingham University (UK) has developed an evidence-based guideline to support clinicians in the identification, assessment and investigation of children who may have a brain tumour. The work was supported by the Samantha Dickson Brain Tumour Trust. Delayed and misdiagnosis of children with a brain tumour in the UK has been the subject of frequent adverse media attention. A recent article in The Times On Line reports on the UK situation, using as a reference point the experience of an 11-year old boy with a medulloblastoma.
Mobile phones: An article about mobile/cell phones and gliomas and meningiomas from the long-awaited INTERPHONE study will be published in the International Journal of Epidemiology on 18 May if not before. Official media releases, as opposed to “leaked” versions, will be available from the website for the International Agency for Research on Cancer (IARC). As anticipated, the study has its critics.

In any call for further research and reporting arising from the Study, patient advocates should ensure that the incidences of so-called “benign” and low grade brain tumours are included in the statistics gathered by cancer registries. A benign brain tumour can have a totally different outcome from a benign tumour on the leg, back, or arm, for example.

ALA fluorescence compound 5-ALA and brain tumour surgery: An article about this subject by Professor Walter Stummer (Germany) appears in the IBTA magazine and on 10 May CBS News Medical Correspondent Dr Jennifer Ashton reported on a trial being conducted at four US centres utilising the compound to assist with achieving more complete resections.
At Ohio University scientists are working on a nanocomposite particle that will combine both fluorescent and magnetic properties to assist with MRIs before and during neurosurgery but it is not yet suitable for testing on humans. On 5 May a presentation by Dr Nader Sanai at the AANS meeting Value of Glioblastoma Extent of Resection: A Volumetric Analysis of 500 Patients reported that the findings demonstrated that an extent of resection > 78 percent can improve patient survival, with this association continuing even at the highest levels of resection.
DIPG: Gloria Garcia (Spain) advises that two hospitals in Barcelona and Mexico will be trying a new maintenance therapy for DIPG, commencing after radiation therapy, which includes carboplatin, vincristine, fluvastatin, thalidomide, and nimotuzumab. The Mexican hospital requires a biopsy to confirm low grade glioma.
Post traumatic stress disorder (PTSD): Adult survivors of paediatric cancer had more than a fourfold greater risk of PTSD, compared with siblings, in a major study of 6542 childhood cancer survivors who were diagnosed between 1970 and 1986. The brain tumour patients among this group who were treated some years ago would have experienced more traumatic treatment than that administered today.
German conference: The 18th International Conference on Brain Tumor Research and Therapy will be held in Travemunde, Germany, during 18-20 May. The program and abstracts can be downloaded from here. One of the conference directors, Professor Manfred Westphal (Hamburg), states that for the first time they have included paediatric neuro-oncology. There is a significant input from Japanese researchers.
Parvovirus: Scientists at the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) have reported promising results from a study in which the rodent parvovirus H-1 was used to treat brain tumours in rats. Two thirds of animals injected with the parvovirus showed complete regression of their tumours. Although the virus was detected in healthy cells, it was only found to reproduce in the tumour cells, allowing it to reach cancer cells situated some distance away from the primary tumour. This holds great promise for the successful treatment of glioblastomas which are characterised by their diffuse growth. Parvovirus H-1 does not cause any disease symptoms in humans and is not immediately eliminated by the human immune system after injection. Furthermore, it readily passes the blood brain barrier so can be administered via the blood stream. The DKFZ researchers are now planning a clinical trial for the treatment of advanced glioblastomas.
Dichloroacetate (DCA): Impatient at the relatively slow results from the clinical trial process and mindful of their poor prognosis, a number of glioblastoma patients have been among those cancer patients who have self-medicated on dichloroacetate (DCA) following promising results published in 2007. In a very small self-funded trial of this off-patent drug within the University of Alberta, led by Dr Evangelos Michelakis, and published on 12 May 2010 in Science Translational Medicine, the brain tumours of four out of five patients who took the drug shrank or stopped growing. Dr Michelakis warns against self-medicating on the drug brought over the Internet. Dr Abhijit Guha from Toronto, who was not involved in the study, said that the drug could be viewed with “cautious optimism”, but “I don't think you can take any conclusion that this particular agent works or doesn't work”.
Web-based MRI readers: Has anyone come across a Web-based service that will enable MRI images to be uploaded from one location so that may be viewed by a specialist at another location, particularly when seeking a second opinion? If so, please contact
World Walk and Awareness Week: Start planning now for an appropriate awareness-raising activity to be held during the International Brain Tumour Awareness Week (31 October – 6 November) and, if you are planning a local walk as part of the Walk Around the World for Brain Tumours either during the Awareness Week or earlier, please let us know ( and we will list your activity on the IBTA website, send a message of best wishes to your walkers, and publish a report and photos about it later.
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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