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[Editor's Note: This does not involve the Musella Foundation - we are passing it along to you because I think it may be of interest!]
IBTA E NEWS AUGUST-SEPTEMBER 2011
Dear Friend
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Colin David Edward Oliver: It is with tremendous sadness that we announce the death of Kathy and Gordon Oliver’s beloved son Colin who died from a brain tumour on 27 August, 2011. He was 32 years old when he passed away in the arms of his family and at the house in which he grew up in Tadworth, Surrey, UK. He leaves a sister, Miranda. Kathy Oliver, who helped establish the IBTA in 2005 and is a Co-Director, said: “Colin was courageous until the very end and never gave up hope that he might beat the brain tumour. He leaves us with hearts full of love for his decency, dignity and devotion to family, friends and work colleagues, and with deep gratitude that we shared his life for 32 years.” Please see further information here.
South Africa: IBTA Chair Denis Strangman visited South Africa during August where he spoke at the South African Oncology Conference and assisted Deirdre Kohler from Port Elizabeth in promoting greater awareness about the Brain Tumour Foundation South Africa, which she has established. 180 copies of the IBTA magazine were distributed, together with 60 copies of the IBTA booklet about the first recorded operation for a glioma. Deirdre also spoke at the Conference and sold 40 copies of her book about her journey with an oligodendroglioma brain tumour. You can read more about the conference attendance and related activity (which was supported by MSD Oncology) here.
Antiseizure drug benefit: New research suggests brain tumor patients who take the antiepileptic drug valproic acid on top of standard treatment may live a few months longer than people who take other kinds of epilepsy medications to control seizures. The research is published in the 31 August 2011 online issue of Neurology, the medical journal of the American Academy of Neurology. For this study, researchers analysed the use of antiepileptic drugs by 587 brain tumour patients who had been enrolled in the EORTC 26981-22981/National Cancer Institute of Canada CE.3 clinical trial involving radiation therapy with and without temozolomide. This finding may require a re-think of current practices about prescribing anti-seizure medications to brain tumour patients.
Not the only GBM: Brain tumour scientists will have to move quickly if they are to retrieve the use of GBM as representing glioblastoma multiforme. The European Medicines Agency has issued a 21-page “reflection paper” about pharmacogenomic biomarkers which includes plenty of references to GBMs but in this instance they refer to “genomic biomarkers”. The paper can be downloaded from this webpage and has a relevance to cancer clinical trials. From a patient perspective our concern is the potential for cash-strapped health authorities to use indicative biomarkers which have not yet been fully validated as a means of rationing access to new and expensive brain tumour therapies.
Swedish views on elderly: Dr Annika Malmstrom (senior consultant at the University Hospital in Linkoping, Sweden) spoke recently at the COGNO (Australian clinical trials body) meeting in Sydney about the participation of the elderly in brain tumour clinical trials. Among the many suggestions she put forward Dr Malmstrom believes that protocols must be specifically addressed to the elderly and help sought from pharmacologists. Twenty per cent of patients are on three or more medications and a previous malignancy is common, both of which can complicate the situation. The patient should not be embarrassed on functionality and time should be allowed for decision-making. Study personnel should even consider visiting the elderly candidate in their home.
Navigating Through a Strange Land: The IBTA continually seeks to identify and review books written by patients and caregivers about their brain tumour journey. There is a link to several books here. Ten years ago there were very few books in this category but a pioneering effort was the book “Navigating Through a Strange Land”, edited by Tricia Roloff, and containing chapters written by patients, caregivers and health professionals. Tricia (now known as Tricia Perrine) advised us recently that a third expanded and updated edition had been published in late 2010 and is available through Amazon or directly from Indigo Press at indigopress.orders@gmail.com Make sure you specify the third edition (2010) which has a photo of a lake on the cover.
Glioma.ed: This was an on-line US-based CME program which featured neuro presentations of interest to brain tumour specialists and patients. In July it was rolled into http://www.cmecorner.com/ and fourteen of the neuro-relevant presentations (which may or may not be up to date) have been archived and can be accessed here.
Brain hospice: In the space of a little over ten years more than 311,000 people have visited Di Phillips’ BrainHospice website which seeks to convey helpful information for the caregiver of a brain tumour patient who is in the final stages of their disease. It contains information about signs and symptoms in the end stages. Di cared for her late father who had a glioblastoma. It could be a useful web-based resource when caregivers ask Doctors difficult questions such as “How do brain tumour patients generally die?” but they need to be aware that its content can be confronting.
CT scans and radiation effects: This is the subject of continuing discussion, particularly among brain tumour patients, and the Australian Broadcasting Commission has an interesting background paper in lay person’s language here.
Brain implant detector: A collaboration of some of Germany's top neurosurgeons and electrical engineers is behind an innovative project which aims to treat recurring brain tumours. The team, based in TU München, Heinz Nixdorf Lehrstuhl für Medizinische Elektronik in Munich, has designed a closed loop system which is intended to be implanted into the brain following surgery. At the core of the system are an oxygen sensor, which detects emerging hypoxia in the tumour microenvironment, and a radiofrequency transmitter. Hypoxia is a common sign of tumour activity. An implantable drug delivery unit is being developed so that when hypoxic conditions are detected, a dose of chemotherapy is administered directly into the tumour surroundings. The researchers hope that their system will lead to a more efficient way of recognising and treating recurrence of brain tumours.
Meningiomas: Tumour samples from meningioma patients in Sweden, Germany, England and Denmark, have helped scientists identify a genetic variation close to MLLT10 on chromosome 10 which increases the risk of meningiomas developing. UK scientists associated with the project received funding from Cancer Research UK.
EANO magazine: The first issue of the EANO (European Association of Neuro Oncology) web-based magazine is freely available on-line at this link. In addition to a number of scientific articles it contains an article by IBTA co-director Kathy Oliver “Why do we need brain tumour patient advocates?”
Brain tumours feared: In a survey commissioned by Cancer Research UK, 16% of 2056 UK respondents identified brain cancer as the cancer they most feared getting. Bowel cancer was the next most feared cancer, some distance back at 10%.
Non communicable diseases (NCDs): We have mentioned the UN Summit on NCDs in recent E News bulletins. The Summit will be held in New York, commencing on 13 September. Member Countries are currently negotiating the text of a Final Declaration. The IBTA and others campaigned for appropriate recognition of the less common cancers, many of which are not relevant to strategies of prevention, screening and early detection but that is the chosen context of the Final Declaration. Anti-tobacco strategies are necessary and important but they are relevant to just a few of the 200 or more different types of cancer. Our colleagues from the neurological diseases receive just one passing reference in the Declaration but diseases such as mental illness and Alzheimers are hugely challenging NCDs, particularly in developing countries.
Oligodendrogliomas: Scientists at John Hopkins Kimmel Cancer Centre have completed a comprehensive map of genetic mutations in oligodendrogliomas and identified mutations in two genes not previously associated with these tumours – CIC and FUBP1. This discovery might provide new targets for therapies.
Promising therapies: Two of the four new clinical trials Celldex plans to initiate during 2011 involving CDX-110 (rindopepimut) are a Phase 3 randomized, KLH-controlled, double-blind study of rindopepimut in patients with newly-diagnosed, resected GBM that express EGFRvIII. The ACT IV study is expected to enroll up to 374 patients at over 150 clinical sites internationally. Their second new trial is a Phase 2 randomized study of rindopepimut alone or in combination with Avastin in recurrent or refractory GBM patients. As part of Novocure’s TTF device for GBM, ITT Corporation has signed a long-term supply agreement with the company to provide ceramic disks. The ITT announcement mentioned that ITT had already supplied 1m disks to support clinical trials. Threshold Pharmaceuticals has announced the initiation of a clinical trial Evaluating TH-302 in Combination with Bevacizumab at the Cancer Therapy & Research Center at the University of Texas Health Science Center at San Antonio in patients with recurrent high grade astrocytoma including glioblastoma. TH-302 is a novel small molecule hypoxia-targeted prodrug that is selectively activated by the low oxygen conditions believed to be induced in tumors by antiangiogenic therapies such as Avastin. Northwest Biotherapeutics has announced expansion of its DCVax immune therapy trial to12 sites in the US and claims that the popularity of its trial has been enhanced by the opportunity for patients in the placebo arm to cross over to receive the therapy after a certain clinical point.
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.