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Welcome to BT Buddies

Founded in March 2009 Brain Tumour Buddies is a national charity committed to providing information and support to anyone affected by a high grade brain tumour in the UK.

Our website provides in-depth, accurate and up-to -date information on all aspects of dealing with a brain tumour and has been compiled from a wide range of sources. If you can't find the information you are looking for please contact us and we will do our best to help.

We also offer support to patients, carers, relatives and friends in a variety of ways including in our forum, via email and on our Facebook and Twitter pages.

BT Buddies is able to continue providing information and support thanks to kind donations and generous fundraisers. Funds raised for BT Buddies also go towards funding research into high grade brain tumours.

If you, or someone you know, is interested in fundraising for BT Buddies you can contact us at or call 0845 459 4101. We will also be launching a new section on the BT Buddies website in the next couple of weeks which will include information on how you can raise funds for BT Buddies, resources to help with your fundraising and suggestions for events you can take part in. Watch this space!

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  • Tuesday, 29 April 2014 19:23

Dear All 

The cost of premature Cancer-related mortality: In an important study which looked at the cost of premature cancer-related mortality in Ireland in 2009 and which was published as recently as 26 March 2014, researchers have confirmed that the cost to the community of the deaths of people with brain and CNS tumours is disproportionate to the incidence and ranking of the disease.

They measured the economic burden by years of potential productive life lost (YPPLL). The premature mortality cost for brain and CNS tumours ranked 3rd at €42.4 million (about $58m USD) which contrasted with their 7th ranking place in terms of number of cancer deaths in Ireland. The individual cost per each brain and CNS death was €421,200 (about $580,000 USD) for males and €202,542 for females (about $279,000 USD), which represented the second most expensive of all cancer deaths in terms of cost per death. These figures are influenced by the low survival and relatively low age at diagnosis of people with brain and CNS tumours.

New Chair for the IBTA. Following the recent IBTA announcement of Chair and Co-Director Denis Strangman’s retirement from the International Brain Tumour Alliance, IBTA Co-Director Kathy Oliver will become Chair of the organisation effective as of 3rd June.  Kathy and Denis will attend the annual scientific conference of the American Society of Clinical Oncology (ASCO) where the IBTA will have a slot in the combined patient advocacy booth (# 3005).

Brain Tumour magazine: The IBTA intends to print in early May 12,000 copies of the annual Brain Tumour magazine for free distribution to its contacts in 109 countries and to participants at relevant scientific and patient conferences. Readers of this E-News who have not received a past copy of the magazine in the mail should notify their land address to This e-mail address is being protected from spambots. You need JavaScript enabled to view it before 1 May in order to be included in the mail-out.

Heavy cost of unnecessary headache-related brain scans: A study in the USA has identified a cost of $1 billion for brain scans for headache patients. Neurologist Dr Brian Callaghan, who led the study said: “There’s solid research showing that the number of times you find serious issues on these scans in headache patients is about the same for a randomly chosen group of non-headache patients ... And a lot of the things we find on such scans aren’t necessarily something we will do something about”. Comment – This finding is relevant to the question of (1) reducing misdiagnoses and delayed diagnoses of brain tumours; and (2) the usefulness or otherwise of population-based scanning for brain tumours. In some countries there appear to be too many occasions of missed diagnosis because of a failure to refer for a scan. On the other hand we are aware that random scanning would have to be repeated on individuals at least every six months to identify a brain tumour which, as we know, can appear with little or no warning.

eMEET on-line resource: A new online, interactive training programme designed to help patient advocates better understand medicines development and health technology assessment has been launched.

Developed by Eli Lilly and Company in collaboration with internationally renowned experts in the fields of patient involvement and health technology assessment (HTA), the eMEET (Medicine Evaluation Educational Training) online resource is a unique tool designed to help patient advocates navigate the complex world of medicines development, evaluation and assessment. eMEET is endorsed by Health Technology Assessment International (HTAi), the global scientific and professional society for those who produce, use, or encounter HTA. See here to access the resource

Your chance to help influence brain tumour research: James Lind Alliance (JLA) Priority Setting Partnerships in the UK give those most directly affected by a disease the opportunity to influence the direction of future research. The Neuro-Oncology JLA Priority Setting Partnership invites all patients, friends, caregivers, relatives and health professionals to submit the topics they think need to be researched to improve outcomes for people with brain and spinal cord tumours.  The research questions submitted will be prioritised by a panel of patients, clinicians and charity representatives. The final ‘Top 10’ topics will be promoted to research organisations and funding bodies, such as the National Institute of Health Research UK and the European Organisation for Research and Treatment of Cancer. Visit for more information and to take part. The survey closes on 30 April 2014.

Book by Mr Henry Marsh (UK): Neurosurgeon Henry Marsh, who specialises in brain tumours, has written a book about his career. There is a review available here. Mr Marsh carries out important pro bono work in the Ukraine where he has generously assisted in one of the hospitals.

Meetings and deadlines:

The deadline for the early-bird registration for the Annual British Nero-oncology Society (BNOS) Conference to be held on 9-11 July is 30 April 2014.

The deadline for the 11th meeting of the Asian Society for Neuro-Oncology (ASNO) to be held at Istanbul during 11-14 September, is 16 May.

Abstract submissions for the World Cancer Congress being held in Melbourne, Australia, during 3-6 December, are now open and close on 30 May.

Abstract submissions for the 19th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology, to be held in Miami during 13-16 November, close on 9 June.

Radiofrequency guidelines: A panel of the Royal Society of Canada has advised against the introduction of any additional precautionary measures for Health Canada’s Safety Code 6 which sets out limits to exposure to radiofrequency fields aimed at protecting the health of workers and the general public, although the panel did advise that Health Canada should pursue research on the subject. A news item reporting this decision mentions an international study MOBI-KIDS which is assessing radiofrequency fields and brain tumours in the child and young adult populations.

UK stereotactic radiosurgery: UK newspapers have referred to a letter of complaint to NHS England written by neurosurgeon Matthias Radatz and signed by thirteen specialists, which includes “every regional representative of the Radiosurgery Clinical Review Group in England”. The letter is said to refer to a lack of trained staff, restrictions on the use of advanced Radiotherapy, and threats to close 18 specialist (radiosurgery) centres.

Watson to sequence DNA: The computer company IBM will use its Watson cloud computing system, in conjunction with the New York Genome Center, to sequence the DNA of twenty brain tumour patients in order to identify the best ways to treat them. It has been claimed that the system can do in seconds that which might take people years to accomplish.

Doctor Stanislaw Burzynski: The US Food and Drug Administration (FDA) has agreed to allow the parents of eight children to have access to the antineoplastins produced by controversial oncologist Dr Stanislaw Burzynski but only if (according to the linked newspaper report above) they can find a qualified, independent physician to administer the drug. Beyond infusing the drug and overseeing their care, the doctor would have to formally apply for expanded access to an "investigational new drug," as well as get approval from an institutional review board, an independent panel that reviews safety and ethical issues involved in clinical trials.

Company developments:


MagForce and MF 1001: The German company MagForce has announced the enrolment of the first patient in the MF 1001 clinical trial assessing its NanoTherm therapy as monotherapy and in combination with radiotherapy compared to radiotherapy alone in GBM patients. The event occurred at the University Hospital Muenster under the leadership of Professor Dr Walter Stummer. The therapy involves the injection of superparamagnetized iron oxide nanoparticles into the Tumor and their heating in the alternating magnetic field of the NanoActivator.

In a letter to shareholders the company confirmed its proposed expansion in EU 28 countries, including Germany, and stated “... we continue preparing our registration path for the USA. In December, we filed a presubmission with the FDA and expect our dialog with the agency will be most helpful as to defining the regulatory path for NanoTherm® therapy ...”

PBTF and Siemens: In a very interesting innovation worthy of adaptation elsewhere the US-based Pediatric Brain Tumor Foundation (PBTF) has partnered with Siemens Hearing Instruments Inc to distribute top-of-the-line hearing aids and audiology services to patients with brain tumors and other forms of childhood cancer. Hearing loss can result from platinum-based Chemotherapy and radiation therapy.


G-202: A small Phase II trial of GenSpera’s G-202 involving 34 patients with recurrent glioblastoma has commenced at UC San Diego Moores Cancer Center. The drug is activated by the enzyme PSMA.

Brain-derived exosomes: Aethlon Medical Inc announced that it had isolated brain-derived exosomes released into the bloodstream from glioblastoma tumours, thereby holding promise as both a disease biomarker and therapeutic target.

I-124-CLR1404: Cellectar Biosciences (formerly Novelos Therapeutics) has announced the enrolment of its first patient in a Phase II trial of its new PET imaging technology. I-124-CLR1404 in glioblastoma.

Regeneus: Regeneus believes that a recent academic paper showing a remission rate of 30-60% in a rat Glioma model using its Kvax cancer vaccine shows its efficacy and safety.

Tocagen: Tocagen announced that the first patient has been dosed in its clinical trial investigating the intravenous administration of selective cancer therapy Toca 511 and Toca FC, in patients with recurrent high grade glioma (HGG) including Glioblastoma Multiforme.

Vacquinol-1: Swedish researchers using in vivo models have identified the potential for vacuolization (whereby the cell membranes collapse) in attacking glioblastoma cells.

Focused ultrasound: In March the US-based Focused Ultrasound Foundation hailed the use for the first time of focused ultrasound “using InSightec’s ExAblate Neuro system” on a patient with recurrent glioma. Part of the person’s tumour was thermally ablated through the intact skull.

Prognosis: The widow of the late Senator Edward Kennedy, who died from a brain tumour, delivered a sharp rebuke to those who would issue a pessimistic prognosis. In a commentary published in a local newspaper which has just come to light she wrote: When my husband was first diagnosed with cancer, he was told that he had only two to four months to live, that he'd never go back to the U.S. Senate, that he should get his affairs in order, kiss his wife, love his family and get ready to die.


“But that prognosis was wrong. Teddy lived 15 more productive months. During that time, he cast a key vote in the Senate that protected payments to doctors under Medicare; made a speech at the Democratic Convention; saw the candidate he supported elected president of the United States and even attended his inauguration; received an honorary degree; chaired confirmation hearings in the Senate; worked on the reform of health care; threw out the first pitch on opening day for the Red Sox; introduced the president when he signed the bipartisan Edward M. Kennedy Serve America Act; sailed his boat; and finished his memoir "True Compass," while also getting his affairs in order, kissing his wife, loving his family and preparing for the end of life.

“Because that first dire prediction of life expectancy was wrong, I have 15 months of cherished memories — memories of family dinners and songfests with our children and grandchildren; memories of laughter and, yes, tears; memories of life that neither I nor my husband would have traded for anything in the world.

“When the end finally did come — natural death with dignity — my husband was home, attended by his doctor, surrounded by family and our priest.”

Overview of GBM therapies in development: A researcher associated with a drug monitoring company, which is following 47 pre-registration drugs for glioblastoma, has given an interesting insight into the status of these therapies which is freely available here.

Bevacizumab and children: Bevacizumab ( avastin) has been added to England’s Cancer Drugs Fund to treat low grade glioma in children to try and delay the need for radiotherapy until the patient is older and less likely to develop side effects to radiotherapy.

Journalist’s guide to covering cancer: The European Society of Oncology’s (ESO) media team have published a Journalist’s Guide to Making Sense of Cancer, which is available here. It is also a useful guide for patient advocacy groups.

Thank you for all 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
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Cancer Research UK launches new website to reveal local cancer statistics

  • Monday, 19 August 2013 16:31
  • Last Updated ( Monday, 19 August 2013 16:33 )

Doctor and patient Cancer Research UK today (Monday) unveils a new website that reveals a comprehensive breakdown of cancer statistics, which allows everyone to get the latest figures for their area.

The ‘Local Cancer Statistics’ website can be searched by post-code, constituency, local authority or healthcare area and contains information on cancer incidence, survival and mortality, early diagnosis, screening and smoking statistics for individual areas1.

The local figures are compared to the national average and two locations can also be compared directly with each other.

Cancer Research UK hopes the site will be a useful resource for MPs, policy-makers, health professionals, journalists and anyone who has an interest in the state of cancer where they live.  The site will be regularly updated as more information becomes available.

John Baron, Conservative MP for Basildon and Billericay and Chair of the All Party Parliamentary Group on Cancer, said: “It’s really important that MPs and other policy makers understand the burden of cancer locally to them, and what can be done to ensure that cancer is diagnosed earlier.

“Cancer Research UK’s Local Cancer Statistics website will be very useful, and I’d recommend it to anyone interested in cancer data across the country.”

Dan Jarvis, Labour MP for Barnsley Central and Shadow Minister for Culture, Media and Sport, said: “Cancer Research UK’s Local Cancer Statistics website is a great source of information for MPs, their staff and everybody else who is interested in information about cancer like waiting times and smoking rates locally.”

Charlotte Williams, executive director at London Cancer, said: “Cancer Research UK’s Local Cancer Statistics mean health professionals, commissioners and those interested in public health can get information about factors relevant to cancer survival in one place, and can compare neighbourhoods against national averages, and each other. This means it’s easier to identify where we’re doing well, and where we could do better, and how we could potentially learn from others. This will pinpoint where we need to improve to help ensure everyone gets the best care possible.”

Sara Hiom, director of patient engagement and early diagnosis at Cancer Research UK, said: “In the UK we are privileged to have access to valuable information about cancer diagnosis and treatments for different parts of the country. And Cancer Research UK is well placed to add valuable context and insight to such data to make it more useful for busy people.

“We’ve created this website because we hope that it will allow policy-makers and healthcare professionals to understand what’s going on in their area and support local insight and decision-making.”

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Manchester and London proton beam therapy units confirmed

  • Thursday, 01 August 2013 21:59


Cancer patients who currently travel abroad for a special type of Radiotherapy will be able to get it in the UK from 2018.

Public health minister Anna Soubry said £250 million of Government funding is being committed to hospitals in Manchester and London to deliver proton beam therapy.

The therapy targets tumours more precisely, causing less damage to surrounding tissue and fewer side-effects.

Some very rare cancers including tumours affecting the base of skull or spine can especially benefit from the therapy.

The treatment is also suitable for some complex childhood cancers.

At present, children and adults needing proton beam therapy are sent to the United States but the new service will mean more patients will be treated.

From 2018, it will be offered to up to 1,500 cancer patients per year at the Christie NHS Foundation Trust in Manchester and University College London Hospitals NHS Foundation Trust.

Ms Soubry said: "We want the NHS to have the best cancer treatments available in the world.

"By investing in proton beam therapy facilities, we will be able to treat more patients in the UK and reduce the stress placed on families who have had to travel to the United States to receive this innovative treatment.

"This is a huge milestone for the NHS - not only will proton beam therapy help save more lives, it will also ensure that patients experience fewer side-effects and have a better Quality of life."

Emma Greenwood, Cancer Research UK's head of policy, said: "This innovative treatment has important benefits over conventional radiotherapy for patients with several types of cancer, such as brain tumours in children.

"But we're still a long way from fulfilling the Prime Minister's ambition that all cancer patients in England should now have access to the most effective radiotherapy for their cancer.

"This includes other forms of advanced radiotherapy like intensity modulated radiotherapy (IMRT) and image guided radiotherapy (IGRT).

"This announcement is a welcome development, but we need continuing commitment from Government to ensure that these newer and better radiotherapy treatments are available to all patients who need them."

Copyright Press Association 2013

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  • Saturday, 20 July 2013 13:46

Hormone replacement therapy (HRT) and meningiomas: A Danish study of 924 women who had a meningioma has led to a claim that women on HRT have a 30 percent greater risk of getting a meningioma Brain Tumour but the findings have been dismissed by experts in women’s health. One consultant endocrinologist said that the risk might only represent one per 100,000 women per year and was “an absolutely trivial risk and of no clinical or biological importance”. Another expert said that with women who experience early menopause the benefits of HRT are likely to substantially outweigh the long-term risks without HRT, which included osteoporosis and cardiovascular diseases.

Pilocytic astrocytomas: German researchers working within the PedBrain consortium have now published the results of the first 96 genome analyses of pilocytic astrocytomas. They have found that overactive MAPK (mitogen-activated protein kinase) signals are necessary for a pilocytic astrocytoma to develop. They also found that the genomes of pilocytic astrocytomas contain far fewer mutations than in medulloblastomas, for example, and that cerebellar astrocytomas are genetically even more homogeneous than other cases of the disease.Professor Stefan Pfister, who leads the research, said that targeted agents for all pilocytic astrocytomas are potentially available to block an overactive MAPK signalling cascade. Comment: Some Cancer registries do not even bother to record the location of a patient’s brain tumour. In this instance the identification of cerebellar astrocytomas may have significance for long-term research. Patient advocates should press for more detailed information to be recorded about brain tumours in national cancer and brain tumour specific registries.

Patient misdiagnosed with depression: In a succession of tragic errors a 34-year old man died from his brain tumour in Essex (UK) after being misdiagnosed for four weeks in 2011 by three senior doctors who treated him for depression. It was only when he lost the use of his right hand that his tumour was discovered. He initially presented with speech problems and was prescribed 20 mgs of citalopram, sleeping pills and referred for counselling. Later, staff at a hospital mental health unit could not understand him because of his speech problem and he left.After a year-long examination by the General Medical Council (GMC) two of the doctors were told to reflect upon the GMC’s expert’s findings and their assessments of the patient were found to “fall seriously below that of a reasonably competent GP”. The third doctor was found to have failed to consider other causes of the patient’s initial speech problems but no further action was taken. The patient’s grieving father wants the GPs suspended. The medical practice, in turn, has given the father a week to find another practice for his own medical needs, saying he is no longer welcome there.

Comment: Misdiagnoses of paediatric brain tumour patients in the UK have resulted in the very successful HeadSmart program for children and young people and its spread to Europe. Special attention might also be needed to reverse misdiagnosis of adult brain tumours.

Long term effects: Parents of Canadian children treated for their cancer when young have formed a “Pediatric Cancers Survivorship Society of B.C. (British Columbia)” to advocate for better treatment for their now adult children who suffer from complex health problems. Some of these children were given heavy doses of radiation or Chemotherapy when young but treatments have now changed following greater recognition of possible long-term effects. A doctor who sought government funding to identify past paediatric patients who should be warned about possible late effects has had his request rejected.

Surveys: Cancer Research UK is undertaking an international on-line study of key issues in cancer surgery services. The twenty-minute on-line survey will target professionals and policymakers in six countries: the UK, Australia, Canada, Denmark, Norway and Sweden and has a deadline of 31 July. UK neurosurgeon Dr Colin Watts has circulated information about the survey through the British Neuro Oncology Society. They are hoping to identify cancer surgery trends, performance and challenges and to identify examples of best practice.

Another survey of interest to brain tumour professionals is one initiated by the SIOP Europe DIPG Network. The survey, which is closing soon, seeks clinical information from professionals who treat DIPG patients about the use of steroids in the DIPG context and Palliative Care in DIPG. There are separate surveys for professionals within Europe and outside Europe:

Steroids – Outside Europe - Password = DIPGsteroids

Palliative care – Outside Europe - Password = DIPGPcare

Steroids - Europe – Password = DIPGsteroids

Palliative care – Europe - Password = DIPGPcare

The role of humour: US researchers who undertook a study of the reactions of College students have concluded that humor helps the individual to tolerate latent anxiety that may otherwise be destabilizing.

As if to prove the researchers’ theory correct a 44 year-old Scottish journalist launched a blog “Hole in The Head” in 2011 where he chronicled with humour and wit his journey with a brain tumour. He passed away in June 2013. In his last entry on 13 April he wrote: “Cancer death can be so cruel and undignified. At least with glioblastoma it seems that there is no pain, no suffocation, no pneumonia, no dwindling out of personality into dementia. Eventually the tumour fatigue takes hold and you simply sleep it away. But until then, I fully intend to enjoy myself as much as I can. I will remain me until the end, and I will not waste that time on self-pity and fear. And I will fight with every resource at my disposal. I have a strong mind, and I'm not planning on going anywhere gently.” He had commenced that day’s blog with a sarcastic comment about plastic shopping bags: “I'm keeping out of supermarkets. Two quid for a bag for life? If I'm going to spend that kind of money on a plastic carrier, I expect it to last past the autumn.”

Passing of Dr Greg Foltz: The IBTA was told at the recent ASCO meeting in Chicago by two friends of distinguished neurologist Dr Greg Foltz of Swedish Neuroscience (USA) of his deteriorating condition due to pancreatic cancer. Dr Foltz died on 27 June a few weeks after turning 50. He had founded and directed the Ben & Catherine Ivy Center for Advanced Brain Tumor Treatment at Swedish Medical Center. There is a supportive video news tribute to Dr Foltz here. We had planned to interview Dr Foltz for the 2014 Brain Tumour magazine and conveyed some questions through his friends, should he wish to say something on the record but unfortunately this was not to be the case. We do know, however, that his friends had it in mind to try and create a repository for his genomic research and Marty Tenenbaum has supplied the IBTA with this information:

“Marty Tenenbaum, Chairman of Cancer Commons, and Tony Blau M.D., who heads the University of Washington’s new Center for Cancer Innovation were close colleagues of Dr. Foltz. Together the three founded Partners in Personal Oncology, a non-profit organization for precision oncology: using the latest scientific tools and knowledge to match each patient to the best available drugs and trials, based on the molecular subtype of their tumor, and to learn as much as possible from their clinical response.  

“As one of his last acts, Greg generously agreed to donate his personal database of clinical and molecular data from hundreds of GBM patients to further this mission.  We hope this will inspire his colleagues, as well as individual GBM patients, to contribute their data to create a continuously updated knowledge base linking molecular subtypes of GBM to treatments and trials. Please consider contributing your data to this knowledge base, which will serve as a lasting legacy to Greg’s work, and an invaluable resource to GBM researchers, clinicians and patients. To learn more, email us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or Marty Tenenbaum ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) and Tony Blau ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )”

NCI data set: A data set of cancer-specific genetic variations made publicly available by scientists at the US National Cancer Institute (NCI) to cancer researchers, includes data from brain tumour tissue and will enable researchers to identify possible new genomic defect targets and to overcome acquired resistance.

Meetings: The ABTA’s Patient and Family Conference will be held in Chicago during 26-27 July.

Company developments: The German-based company Apogenix GmbH has obtained patents in Europe and Canada to cover its lead product Apocept™ (APG 101) which is being investigated for treating glioblastomas.

German firms Immatics and BioNTech will lead a consortium of 14 organisations, including those from Spain, the UK, Switzerland, Denmark, the Netherlands, and the USA, in the development of biomarker-guided actively personalised vaccines to treat glioblastoma. The project has also been supported by a €6m grant from the European Union.

The Belgian-based firm Activartis has received orphan drug status from the US Food and Drug Administration (FDA) for use of its investigational cancer immunotherapy AVO113 in treating Malignant Glioma.

Ophthalmologists and brain tumours: There have been many occasions where a person’s brain tumour has been discovered during an eye examination, either as part of a regular check-up or during an examination prompted by vision or other problems. In Australia the Australian Society of Ophthalmologists and the Royal Australian and New Zealand College of Ophthalmologists have launched legal action against a health regulator to prevent optometrists being able to diagnose and treat glaucoma. One of their spokespeople said “Glaucoma can be notoriously difficult to diagnose and can be confused with brain tumours and neurological diseases”.

This didn’t stop a UK optometrist recently from immediately referring a woman to hospital after she complained of a “pulling” sensation in her eye and the optometrist identified that sight in her left eye had deteriorated significantly since her last eye examination in 2009. At the hospital doctors diagnosed her with a pituitary brain tumour.

Meanwhile, US woman Meg Brooker will run in the Missoula half-marathon this Sunday just one day before completing her radiation therapy for an oligodendroglioma brain tumour and three and a half months after her neurosurgery. Her radiation oncologist, neurologist and medical oncologist will also be running in the half-marathon. Ms Brooker’s brain tumour was discovered in April after she experienced double vision and saw an eye doctor who said she had a hemorrhage behind her left eye and an inflamed optic nerve behind her right eye and recommended an urgent MRI.

Great Dane precedent: A Colorado University (US) researcher who used his knowledge of immunotherapy to treat his pet Great Dane dog is now proposing to initiate human trials utilising the same methods against glioblastoma. The 12 year old dog, called “Star”, developed advanced bronchoalveolar adenocarcinoma (lung cancer) and the doctor treated the dog with a 10-gram sample of its tumor enriched into an injectable vaccine that contained a high concentration of heat shock proteins in “chaperone-rich cell lysate” (CRCL). The dog survived for an unexpected extra 44 weeks.

Palliative care: The UK Liverpool Care Pathway for dying patients will be abolished after an independent review by Lady Neuberger, who was appointed by the UK Government following reports that under the scheme dying patients had been drugged and deprived of fluids. Lady Neuberger was quoted as saying "Caring for the dying must never again be practised as a tickbox exercise and each patient must be cared for according to their individual needs and preferences, with those of their relatives or carers being considered too".  There were references to poor training and sometimes a lack of compassion on the part of nursing staff and junior doctors who were expected to make life and death decisions beyond their competence.

Comment: This outcome will have implications in countries such as Canada and Australia which had been following the UK Pathway model with interest and using it as a guide for their own end of life pathway plans.

Thank you for all 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

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  • Friday, 28 June 2013 20:58

ASCO and avastin (bevacizumab): The results of two important clinical trials involving Avastin and glioblastoma were presented at the annual meeting of the American Society of Clinical Oncology (ASCO) held in Chicago during 31 May – 4 June 2013. The two trials were RTOG 0825 (a double-blind placebo-controlled trial of Avastin in patients with newly-diagnosed GBM) and AVAglio (progression-free survival and health-related Quality of life involving Avastin, Temozolomide and Radiotherapy in newly-diagnosed GBM).

The results created discussion and controversy, with one of the more balanced reports being by Anette Breindl in Bioworld.

Dr Mark Gilbert, from the MD Anderson Cancer Center, who presented the RTOG 0825 results was reported as stating that in relation to using bevacizumab in newly-diagnosed GBM:  “Our study would strongly suggest that it is not beneficial to do it as front-line treatment but to reserve it as second-line or salvage therapy”.

Some commentators worried that the overall results might have an adverse effect on the US Food and Drug Administration’s (FDA) “sort of conditional” approval for Avastin and brain tumours in 2009. The “worry” revolves around the survival advantage as expressed by progression-free survival (PFS) and overall survival (OS) but Dr Richard Pazdur from the FDA was reported in the New York Times as stating “We have approved a lot of drugs without a survival advantage”.

Brain Tumour patient advocates need to be alert to this on-going debate about the measurement of the survival advantage of new therapies for brain tumours and express their views when necessary.

Meanwhile, in a relatively little-reported media release by Roche on 17 June it was stated that Avastin had been approved in Japan for newly-diagnosed GBM in combination with radiotherapy and temozolomide and as monotherpy for recurrent GBM. The approval was based on the Phase II BRAIN study, a Japanese Phase II study (JO22506) and the Phase III AVAglio study. Furthermore, it was stated that applications for first-line treatment have been filed in the European Union and Switzerland.

Pratt and Whitney inquiry results: An 11-year study, costing $12 million, of 222,123 men and women who worked in one or more Connecticut (USA) Pratt and Whitney jet engine plants between 1976-2004, found no statistically significant elevations of the rate of cancer among workers. The study was overseen by the State Department of Health and undertaken by researchers at the University of Pittsburgh and the University of Illinois at Chicago and was prompted by the identification of an apparently disproportionate incidence of brain tumors among former workers.

The researchers also reviewed 11 chemical or physical agents on the basis of known or suspected carcinogenic potential that could affect the CNS or other organs. Garry Marsh, from the University of Pittsburgh, who led the study, was reported as saying "Let's face it: Brain cancer is a terrible disease and anyone who suffers from it or had a loved one suffer from it wants to know why they got that disease ... We looked at everything conceivable as a possible cause of brain cancer".

Utah scan for clusters: The Utah Department of Health is conducting a statewide scan for clusters of gliomas but Dr Howard Colman, a member of the brain Tumor and clinical research team at the Huntsman Cancer Institute has commented: "What I would say about the incidence of cancer clusters (is) in many cases when these have been investigated, there hasn't been a significant increased risk over what you would expect in the general population".

Dr Stanislaw Burzynski: Dr Burzynski from Texas is a controversial clinician. The UK BBC television program “Panorama” recently screened an item “Curing Cancer: Or Selling ‘Hope’ To The Vulnerable?” about his procedures and track record in treating brain tumors. UK readers can view the program here and non-UK readers can view it at this link.

Therapeutic developments: Researchers in Sydney, Australia, believe that microvesicles play an important role in the changes to blood vessels seen in high grade brain tumours and may provide a new target for future treatments.

North American researchers claim that a combination of the myxoma virus and the immune suppressant rapamycin can kill brain tumour stem cells and differentiated compartments of GBM.

Professor Harry T Whelan at Children's Hospital of Wisconsin is seeking to recruit patients for a Phase 1 Photodynamic Therapy (PDT) protocol for childhood brain tumours. See here for further details.

Company personnel and therapy developments: Cotara is a brain tumor therapy that has been under development for several years by Peregrine Pharmaceuticals Inc. Company staff told the IBTA at the recent ASCO meeting that they are seeking a partner to participate in their Global Phase III trial and to commercialize the product.

Fascinating insights into the Novocure Company, which produces the TTF device for brain tumour treatment, are contained in an interview with Novocure CEO Asaf Danziger.

The German company Magforce AG, which is progressing its Nanotherm technology for brain tumours, has appointed former Fresenius Medical Care AG CEO Ben Lipps as its new CEO.

Novartis is supporting a phase III randomized trial of LDE225 (Sonidegib) versus temozolomide in recurrent, relapsed or refractory sonic-hedgehog (SHH) positive medulloblastoma in both adult and pediatric patients. The clinical trial includes a new 5-gene signature test that can easily identify patients with SHH activated tumors and requires only a small amount of archival tissue. The clinical trial will be open at 88 different sites in 17 countries (Australia, Belgium, Brazil, Canada, France, Germany, Hungary, Israel, Italy, Netherlands, Poland, Russia, Spain, Sweden, Switzerland, UK, US) and is open for accrual. Investigators told the IBTA at the recent ASCO meeting that they were interested in including Asian sites in their coverage.

Dr Sean Lawler, originally from the Leeds Institute of Molecular Medicine (UK) and now at Brigham and Women's, has told the IBTA that he is working in the GBM context on an Astra Zeneca compound AZD1080 which is a GSK 3 beta inhibitor. This has come about through a UK Medical Research Council and Astra Zeneca initiative.

Brain tumour researchers from the German Cancer Research Center (DKFZ) are collaborating with Bayer Healthcare in searching for agents that might be specifically directed against the BCAT1 enzyme which could be cooperating with IDH in the decomposition of branched-chain amino acids.

Wrong diagnosis judgment: Fort Harrison VA Medical Center (USA) has been ordered to pay $60,000 to a man in his seventies wrongly diagnosed with brain cancer and told he had just a few months to live. The patient, Mark Templin, quit his job, sold his pickup truck, celebrated a ‘last’ birthday, bought a prearranged funeral and contemplated suicide. His son-in-law built a box for his ashes. The Judge awarded Templin $500 a day for the initial period of severe mental and emotional distress and $300 per day for the latter period until Templin received his new diagnosis (a stroke). The Judge ordered VA to repay Templin for the cost of the birthday party and (prepaid) funeral.

Meanwhile, an inquest in the UK has been told that National Health Service staff treated a man suffering from a previously diagnosed brain tumour 'just like another drunk' in the vital hours before his death. He had been rushed to hospital with head pains and vomiting but his brain tumour diagnosis had not been noted.

Steroid effects: A devoted father of three, aged 55 years, smashed his way through a closed window in the Queen’s Medical Centre in Nottingham (UK) in March 2012 and plunged 50 feet to his death after steroid drugs made him believe he was Jesus, an Inquest heard. The episode occurred the day after he had a successful operation for a Malignant brain tumour. The Inquest was told that the man suffered from euphoric and paranoid episodes caused by the dexamethasone he took to reduce swelling of the brain. A doctor and twenty people in the Ward tried to prevent him from jumping to his death. Comment: Is there a case for more effective warnings about the possibility of steroid-induced psychoses and diabetes from some high doses of dexamethasone?

Smoking and the risks of neurosurgery: In a review of the impact of smoking on neurosurgical outcomes in the Journal of Neurosurgery the three authors state that in a study of 453 patients who underwent Craniotomy for tumor removal, there were higher rates of Intraoperative blood loss and postoperative complications and a low rate of one-year survival in active smokers compared with non-smokers. Patients who quit smoking before surgery did not have the higher risk of complications and one-year mortality.

Shunt blockage: A 15 year old English schoolboy who had been successfully treated for a brain tumour and had raised thousands of pounds for the Royal Marsden Cancer Charity (UK) died from blockage of his shunt by cell debris, according to a Coroner’s Court. His death occurred on a bus returning from a school trip to Austria when he went to sleep, resting his head against his brother.

Brain tumour patient fathers baby girl despite odds: A 34 year old brain tumour patient, Ben Lindon from the UK, has fathered a baby girl despite being told he would most likely be infertile following 54 rounds of Chemotherapy. After his initial treatment he took up running and changed jobs from being a journalist and retrained as a tree surgeon. “Being out in the fresh air was incredibly therapeutic”, he said. He is now raising money for the UK charity Brain Tumour Research.

Meetings and deadlines: The deadline for eight US $1500 scholarships to colleagues in developing regions to attend the 4th Quadrennial Meeting of the World Federation of Neuro-Oncology and the 18th SNO ASM is 1 July 2013. The annual meeting of the British Society for Neuro-Oncology (BNOS) will be held in Durham (UK) during 10-12 July 2013.

IBTA Survey: Thank you to the 760 people who participated in our recent survey about the IBTA's publications and its projects. 81.5% described the monthly E News as either "useful" or "most useful" and the vast majority looked forward to receiving the IBTA's Brain Tumour magazine. Most believed we had the balance right between "hope" and "realism" in the content of our magazine. The responses to this particular question will be reported on in more detail as a poster at the forthcoming Australian Palliative Care Conference. Among the survey results were dozens and dozens of very helpful suggestions as to how to improve our work and publications and we will analyse these very carefully.

Dainere Anthoney: We are sad to report the passing on 24 June of 15 year-old Dainere Anthoney from Canberra, Australia, who was diagnosed with a medulloblastoma brain tumour in 2009 and despite undergoing heavy-duty chemotherapy and radiotherapy she managed to maintain a web blog, attend school, take part in athletics for the disabled, and write two books. Dainere also reviewed a children's book for the IBTA's Brain Tumour magazine in 2011 which can be viewed here. There is also a link to our review of her first book here.

Thank you for all 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

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