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IBTA E NEWS FEBRUARY 2012


Posted on: 02/20/2012

IBTA E NEWS FEBRUARY 2012

Dear Friend

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Avastin: The appearance of a counterfeit version of the injectable drug bevacizumab (Avastin) in the USA has been extensively reported in the media. The drug is used in the treatment of brain tumours, among other cancers. Genentech, the US manufacturer, issued a media statement which is available here. More detailed background about the episode was contained in a statement from the UK Medicines and Healthcare products Regulatory Agency, which is available here.

Drug shortages: The problem of shortages of some drugs used in cancer treatments - including methotrexate which is used to treat primary central nervous system lymphomas (PCNSL) - is a continuing problem in the USA and worldwide. The American Society of Hematology and ASCO have both been applying pressure. Apparently, a significant cause in the case of methotrexate was the closure last year of Ben Venue Laboratories which is one of the four US makers. In Australia supplies of Doxil (known locally as Caelyx) used to treat breast and ovarian cancers, have just about disappeared due to the US manufacturer suspending its production.

Dates and deadlines: Abstract submissions for the 18th Annual Neuro-Tumor Dinner Meeting at AACR (2 April) close on 2 March. The Rare Disease Lobby Day in Washington DC is on 28 February and a limited number of $500 travel scholarships are available. Their intent is to ensure that a "diverse representation of advocates" are able to participate. By definition, brain tumours are a rare disease. The abstract submission deadline for the 10th EANO meeting in Marseille, France, during 6-9 September is 31 March while the application deadline for two SNO travel scholarships for US or Canadian Young Investigators to attend EANO is 27 February. The deadline for the SNO $50,000 International Outreach Research Fellowship for professionals from outside North America has been extended to 30 March. The abstract deadline for the BTEC meeting to be held during 30 June - 3 July at Montpellier, France, has been extended to 1 March, while the early bird registration closes on 15 March. The abstract deadline for the 15th ISPNO meeting to be held in Toronto, Canada, during 24-27 June has been extended to 29 February.

Forthcoming awareness days: CERN has declared 19 April as Ependymoma Awareness Day. They have also released a 11 mins 50 sec video "Advancing Patient Care; Working for A Cure" which can be viewed here. The 5th Brain Trekking event organised by the Chinese University of Hong Kong's Brain Tumour Centre will be held on 10 March. Martin van den Bent (Netherlands) will speak at a COSA clinical professional day on 9 March and at the Sydney Brain Tumour Forum for patients and families on 8 March. Pituitary Day will be held at Brigham and Women's Hospital in Boston on 24 March and the 5th Meningioma Awareness Day will be held at Harvard Medical School on 28 April.

Unproven therapies: Researchers at the University of Otago (NZ) have added credence to the theory that high doses of Vitamin C might enhance radiation therapy for GBM patients. Their article is available in uncorrected proof format in the Journal of Free Radical Biology and Medicine. A News Release from the Natural Society claims that research has shown that turmeric may suppress cancer growth, including in brain tumours. Parents and others have often wondered if the ketogenic diet might be appropriate for seizure control, and general anti-tumour activity, in those with brain tumours. A new clinical guidance on epilepsy from the UK NICE organisation does not deal with that issue as such but recommends: "Refer children and young people with epilepsy whose seizures have not responded to appropriate AEDs to a tertiary paediatric epilepsy specialist for consideration of the use of a ketogenic diet."

Everolimus: Israel has decided to provide this drug for free or at low cost to patients who have subependymal giant cell astrocytoma (SEGA). Originally costing approximately $37,000 USD the decision will benefit six Israeli patients with this condition.

Brain metastases: The American Society for Radiation Oncology has issued a 16-page Guideline on the radiotherapeutic and surgical management for newly diagnosed brain metastasis(es). Its recommendations distinguish between single and multiple brain metastases and those with a good or poor prognosis.

GBMs: Researchers have suggested that SULF2 is a possible candidate therapeutic target for the treatment of GBMs and that assessing its levels could identify tumours dependent on growth factors such as PDGF.

3-D glioma model: Brown University scientists in the USA have created the first three-dimensional living tissue glioma model, complete with surrounding blood vessels and used it to show that iron-oxide nanoparticles ferrying tumstatin penetrated the sustaining blood vessels.

Meningiomas: The results have been published of a major study, led by Dr Elizabeth B. Claus of Yale, which examined the relationship between family and personal medical history and meningioma risk. 1124 patients with meningioma were involved. Compared with the control group patients were more likely to report a first-degree family history of meningioma (more so in younger cases). They were less likely to report immune conditions, including allergy, and more likely to report a history of thyroid cancer. The article is freely available here.

Palliative care: ASCO has issued a provisional clinical opinion to the effect that " ... combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden". This is obviously related to the recent beneficial findings from a Phase III RCT of patients with a metastatic non-small-cell lung cancer. The early offer of palliative care to patients with a malignant primary brain tumour remains controversial because of the important role of hope in coping with the disease and a general misunderstanding on the part of many members of the public about the place of palliative care. Meanwhile, a film which might help to correct this misunderstanding is "Life Before Death" which was screened around the world earlier this month. Sections of the film are downloadable and number 21 "Pediatric Palliative Care" contains film about "Jessica" who has a brain tumour and is receiving care in Singapore. The segment is available here.

Genetic research: University of IIlinois researchers looked at genetic information from 22,000 genes and identified a group of genes relevant to brain tumours but found gene expression patterns that had different and sometimes opposite relationships with survival. Some genes were also specific to a given phase of cancer. The full article is available on open access here.

Cell migration: Researchers at the University of Colorado have shown that turning off signalling via the Mer pathway made affected brain cancer cells more sensitive to chemotherapy.

Oligodendrogliomas: Because of its significance to existing patient care an abstract intended for the ASCO meeting in June about the co-deletion of chromosomes 1p and 19q in pure or mixed Anaplastic Oligodendrogliomas has been released now. Based on a study of the RTOG 9402 trial data it shows that of the 126 participants with the co-deletion the median survival time for 59 patients randomized to the PCV chemotherapy and RT arm was much longer than the 67 participants randomized to the RT arm alone (14.7 years vs. 7.3 years).

Pediatric low grade glioma: On 16 February Professor Eric Bouffet (Toronto) delivered a live presentation on low grade glioma in childhood as part of the ESO online educational resources. The presentation includes 53 illustrative slides and the session lasts for 45 minutes. Registration as a user is required. Once registered, go to the list of recorded sessions.

Pediatric genome studies: An international research team has deciphered the genetic material of 48 pediatric glioblastomas and discovered genetic alterations that affect histones. They now intend to apply epigenetic therapy (being tested in other cancers) to GBMs with histone defects. Meanwhile, other international researchers have also published the first whole genome sequence of pediatric medulloblastoma and researchers at Ohio State University have shown in animal models that a strain of the measles virus (MV-GFP) prolongs survival in a model of disseminated medulloblastoma.

DIPGs: It is proposed to establish an International DIPG Registry "... to provide a comprehensive database of clinical, radiologic and pathologic data linked to a bioinformatics repository of molecular data of patients." More information is available here. A DIPG European meeting will be held in Barcelona, Spain during 23-24 February.

UK child embarrassed and penalised: There has been outrage at an incident in the UK where a five-year old girl with a brain tumour was forced to clean up her own urine from the floor at school and then stand facing the wall for ten minutes. Her condition often results in her wetting herself. There is still much to be done in the areas of education, advocacy, and awareness-raising about brain tumours and the effects they can cause.

Baby with a high grade glioma: There have been 150,000 page views of the Facebook page of two-month old Matthew Donald Erickson from the USA who had surgery four days after birth when doctors discovered a high grade glioma while removing fluid from his brain. The family also has a website where they sell T-shirts and wristbands. A timely reminder that brain tumours can affect anyone of any age.

Patient Registries: IBTA Co-Director Kathy Oliver attended a conference in the European Parliament on “Establishing Rare Disease and Rare Cancer Patient Registries Throughout Europe” organised by the European Cancer Patient Coalition (ECPC) and EURORDIS (the European Organisation for Rare Diseases). Kathy presented on “Why are patient registries required for rare diseases?” and was also a panellist on the topic.

Another event at the European Parliament, this time to mark International Childhood Cancer Awareness Day was hosted in association with the European Society for Paediatric Oncology (SIOPE) to raise awareness of the many hurdles faced by patients and those who care for them as a result of the controversial EU Clinical Trials Directive. The third session at this conference focussed on early diagnosis of paediatric brain tumours. Dr Sophie Wilne and Professor David Walker of the Children’s Brain Tumour Research Centre (Nottingham) presented on the UK-initiative HeadSmart which aims to enhance awareness of the symptoms of brain tumours in children and young people.

The IBTA also had a presence (session Co-Chair) at the European Society for Medical Oncology (ESMO)/Rare Cancers Europe (RCE) conference on “Improving the Methodology of Clinical Research on Rare Cancers” which took place in Brussels on 10th February.

VAL083: Del Mar Pharmaceuticals claims that a pre-clinical abstract for the April AACR meeting will show that VAL083 inhibits cancer stem cells and is independent of MGMT-related drug resistance. The company said it had initiated a Phase I/II trial in patients with recurrent GBM.

ABC2 and Exosome: Accelerate Brain Cancer Cure (ABC2) and Exosome Diagnostics are collaborating to pursue clinical validation of Exosome's blood and cerebrospinal fluid-based molecular diagnostics technology for brain tumours.

Trans sodium crocetinate (TSC): Diffusion Pharmaceuticals LLC has announced that it has opened a clinical trial of trans sodium crocetinate (TSC) for newly diagnosed GBM. It plans to involve 20 centres in the USA.

Tocagen: A report in the journal Neuro-Oncology shows that in mouse models of brain cancer the administration of 5-flurocytyosine (5-FC), after Tocagen's therapy Toca 511 leads to long-term survival. The concept is under investigation in two clinical trials in patients with a recurrent malignant brain tumour. In another development Siemens Healthcare Diagnostics has partnered with Tocagen to develop companion diagnostic tests, commencing with the above trials.

Pacemakers and MRIs: Usually pacemakers have prevented patients from undergoing MRIs but following the FDA's approval last year of the first heart pacemaker designed to be safe during some MRI scans (Medtronic's Revo pacemaker), a brain tumour patient with the pacemaker is now participating in the ImmunoCellular ICT-107 trial at JFK Medical Centre.

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.

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