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IBTA E-News March 2010

Posted on: 03/16/2010


IBTA E-News March 2010
If you are having difficulty reading this E-News please go to the Web version.
Dear Friend of the International Brain Tumour Community
Less common cancers: The European “RARECARE” project, which has the support of the European Commission, and is intended to highlight the needs of those with rare cancers, proposed to reduce the qualifying incidence for rare cancers from 6 or fewer per 100,000 to 5 or fewer per 100,000. The most important group affected by such a change would have been “GLIAL TUMOURS OF THE CNS and PINEAL GLAND”. Arguments advanced for the change include that it is “more appealing” and “bettered  [sic]  remembered”, which were not strong arguments at all in the opinion of the IBTA.
IBTA Co-Director Kathy Oliver voiced her objections to the change as did several others, including well-known European neuro-oncologist Dr Alba Brandes who told the RARECARE Committee: “…excluding these kind of tumors from RARECARE might impact on patients’ treatments and outcomes, since non rare tumors might be considered manageable by any physician (oncologist, neurologist, etc) without a specific training and know-how.”
The Committee quickly rejected the move and has reverted to its original definition. Its listing of rare cancers can be downloaded from here.
The change in definition could have had a deleterious effect on the decisions of those Government regulatory and subsidisation agencies that are moving towards giving brain tumour (and other) therapies special consideration e.g. orphan designation, based on the rarity of the relevant disease.
ASCO: For the fourth consecutive year the IBTA will have a presence in the patient advocacy area at the American Society of Clinical Oncology (ASCO) annual scientific meeting at Chicago during 4-8 June. We plan to have copies of a new magazine about brain tumours available. Please visit and make yourself known to our representatives. Look for Booth 5005 near the ASCO Central display. 51% of the 29,600 attendees at last year’s conference came from outside of the USA.
Brain tumour tissue donation and banking: The IBTA has prepared a draft discussion paper about brain tumour tissue and whole brain donation for research purposes, which is available for download from here (PDF) and here (Word). If these links do not work for you, email who will send either version to you as an attachment to an email. The paper arose from Kathy Oliver’s and Katie Sheen’s (Astro Fund) involvement in a sub-committee of the British Society of Neuro Oncology Guidelines Group looking at four rare brain tumours.
How many brain tumour therapies are in development: “Of the 861 medicines in development – all in either clinical trials or under FDA review -122 are for lung cancer, 106 for breast cancer, 103 for prostate cancer, 70 for colorectal cancer, 23 for bladder cancer, 61 for brain cancer …”. (Source: Medicines and Vaccines in Development for Cancer”. 2009.)
Obviously, brain tumours appear to be doing well by numerical comparison, however the IBTA has looked through the list and some of the medicines appear to have been a little “dormant” in recent years, or are medicines where another indication probably has a higher priority. On the other hand, the list does not include emerging therapies related to neurosurgery or disease evaluation such as ALA fluorescence (see later in this E-News), alternative radiopharmaceuticals to FDG for PET studies, the TTF approach being studied by NovoCure, enhancements of convection enhanced delivery (CED), or the CyberKnife procedure being refined by Accuray.
With that in mind, one could say (to patients and others) that there are “more than 60 new medications and therapies currently under examination for use on brain tumours”. When one realises that brain tumours (unlike breast and prostate and other cancers) can affect people of all ages that figure might not be as impressive overall when paediatric brain tumours are considered.

Avastin: There is a fascinating exchange between neuro-oncologists from the USA and Europe on the question of bevacizumab (Avastin) and gliomas which appears in recent issues of the Journal of Clinical Oncology. The IBTA has done its best to summarise the respective views on the matters in contention in a short summary document (available here). The IBTA seeks to attend and display at relevant scientific conferences in Europe, North America and elsewhere and has first-hand knowledge of the different approaches and nuances among the main researchers from the different geographic areas.
Antisense Pharma: The European Patent Office has granted Antisense Pharma additional patent protection for the use of trabedersen. This patent gives Antisense Pharma a comprehensive marketing exclusivity for the use of this drug within the settings of tumour-illnesses, illnesses of the central nervous system and immunosuppression, taking into consideration the effective dose. Trabedersen, or AP 12009, is involved in studies for brain tumours. Further information is available in this article.
Ark Therapeutics: “Following a presentation to the EMEA's Scientific Advisory Group on Oncology ("SAG-O") as part of the re-examination procedure, the SAG-O did not consider that the current study (of Cerepro® for brain tumours) provides sufficiently reliable evidence of clinical benefit. The recommendation was made that the Company needed to conduct a further clinical trial before the product could be approved. The Company has therefore withdrawn from the current MAA process to examine this recommendation … Following the withdrawal of the Cerepro® MAA, Ark has initiated a full review of its substantial portfolio of assets, their potential and alternative strategies and options to optimise shareholder value.  The review will also consider strategic alternatives in light of approaches that have already been received.” See media release here.
Seizure education: In a study to be released at next month’s Annual Meeting of the American Academy of Neurology, researchers found that doctors and nurses on TV medical shows responded inappropriately to seizures almost half the time.
Opioids for cancer pain: Fortunately, brain tumour patients do not, as a rule, suffer from major pain but it can occur and in the end of life stage brain tumour patients must have adequate access to opioids for pain control, anti seizure medications, and dexamethasone (or an alternative) for brain swelling. The IBTA has been concerned about this issue for some time, particularly in the less developed countries, and in a comprehensive survey by ESMO-EAPC of 41 European countries N.I. Cherny and colleagues have identified severe restrictions on the availability of opioids for cancer pain in a number of East European countries. One possible method of overcoming some of these problems is the opioid delivery device known as the  hydromorphone polymer implant developed by well-known neuro-oncologist Dr Stuart A Grossman and his colleagues, which is still in a developmental stage.
ALA and brain tumour debulking: The proof may not be there in terms of evidence based medicine (and how would one design such a study?) but Sanai and Berger ( 2008) have stated: “Despite persistent limitations in the quality of data, mounting evidence suggests that more extensive surgical resection is associated with longer life expectancy for both low- and high-grade gliomas.”
One method of enabling a greater resection is to use the prodrug ALA - Aminolevulinic acid hydrochloride (5-aminolevulinic acid HCl; 5-ALA, whereby under blue light the malignant cells emit a red-violet light. It has been approved by the EMA (European Medicines Agency) for surgery on malignant glioma and is used in Germany, Europe and parts of Asia under the name of Gliolan. Two trials have been initiated in the USA but one has been terminated while the principal investigator changes institutions. The other is underway at Allegheny General Hospital. Professor Walter Stummer (Munster) who was the lead author of a German study reported in Lancet Oncology has told the IBTA: “In the end, a cooperative effort is necessary. One issue would be to develop ALA as an intra-operative diagnostic agent rather than a therapeutic agent …”
As a patient advocacy group we are puzzled as to why this compound has not been more widely approved and used for the benefit of brain tumour patients throughout the world. If you know anything about this product and its adoption please click here to convey information and suggestions to the IBTA.
Words and music: Bruce Blount, a brain tumour survivor who is involved with the adult ependymoma on line discussion group has put together a mix of words and music (music by David M Bailey) as a tribute to those involved in the brain tumour community. It lasts for four and a half minutes and is a pleasant diversion.
A brain tumour patient’s Charter of Rights: There are already a number of charters of patients’ rights and our colleagues at the ECPC have even suggested their own additions to the European Charter of Patients’ Rights from a general cancer perspective. A group within the IBTA has come up with a draft Brain Tumour Patient’s Charter of Rights. We welcome your comment, particularly from the patients, family members, caregivers and former caregivers, among our readers. Please visit here to review the draft and to offer your suggestions.
Awareness Week and World Walk: A reminder to those organisations who have yet to advise the IBTA of their support for these two projects. Please email so that you can be listed.
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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