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 fundraising@btbuddies.org.uk 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!

Latest news...

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IBTA E NEWS FEBRUARY 2013

  • Thursday, 14 February 2013 11:11
  • Last Updated ( Thursday, 14 February 2013 11:13 )

Important dates and deadlines: Rare Disease Day is 28 February. All brain tumours are categorised as "rare" or "less common" cancers and hence are "rare diseases". 28 February is also the deadline for the regular rate fee for those planning to attend the EORTC-EANO-ESMO Trends in Central Nervous System Malignancies Conference in Prague on 22-23 March. Abstracts for the 19th Neuro- Tumor Club Dinner meeting at the AACR Annual Meeting are due by 8 March. The final RSVP for the dinner meeting is 1 April. Early registration deadlines for the combined ASNO/ISNO meeting in Mumbai during 21-24 March are 20 February and 10 March. The Editor-in-Chief of the SNO journal Neuro-Oncology Dr Alfred W.K. Yung retires at the end of 2013 and applications for the position close on 31 March. The early rate registration date for the European Cancer Congress 2013 is 9 April and the abstract submission deadline is 17 April. The IBTA will have displays at both the Prague and Mumbai conferences and will distribute copies of its 2013 " Brain Tumour" magazine subject to it being printed in time.

Highly eloquent gliomas: Neurosurgeons at the Department of Neurosurgery, Klinikum rechts der Isar, Technische Universität, München, Germany, have reported on the successful resection of 47 supratentorial gliomas which were primarily evaluated to be non-resectable at another neurosurgical department. Techniques used included pre and Intraoperative brain mapping and monitoring (IOM) by motor evoked potentials (MEPs). Median survival was 14.8 months. Four patients had a new motor or language deficit which remained permanent.

Predicting brain tumours: Northwestern Medicine (USA) researchers have developed a new method for predicting and monitoring an individual patient's brain tumor growth. The method, which the researchers hope to offer as an iPad app or upload to a website, uses a personalized patient-specific approach that accounts for tumor features such as 3-dimensional shape, density and growth rate. It could enable rapid assessment of whether or not a therapy is working.

Meningiomas: An international team of researchers has identified four new genetic suspects to add to the already-identified neurofibromin 2 as being relevant to the development of meningiomas. This may lead to personalised medical therapies for meningiomas which currently are primarily managed surgically. See here for abstract of their article in the journal Science.

Research developments: Researchers at the University of Michigan have reported that a Diffusion abnormality index (DAI) shows promise as an imaging biomarker to measure brain tumor response to radiation therapy ... Researchers have found that the molecule TIC10 had potent effects against glioblastoma in mouse models. It activates the gene for a protein called TRAIL (tumour- Necrosis-factor-related-apoptosis-inducing ligand) but other researchers are sceptical about TRAIL-based strategies ... In a review of the literature researchers from Kazakhstan have discussed the role of infectious agents in the carcinogenesis of brain and head and neck cancers and possible novel approaches ... Research at the University of Mississippi has identified two molecules miR-7 and KLF4 that "may serve as biomarkers or therapeutic targets for brain metastasis of breast cancer" ... Researchers in Queensland (Australia) have discovered a protein EphA3 present in about half of all cases of GBM. An antibody treatment is already undergoing trials in leukaemia patients in the USA. The research is published in Cancer Cell ... A report arising from an EORTC-sponsored meeting about brain Metastases was included in a selection by the Editor-in-Chief of twelve key articles appearing in late 2012 in the European Journal of Cancer. The report (which can be downloaded from here) was authored by Matthias Preusser and others.

The future of QALY: A controversial European proposal to do away with QALY (Quality-adjusted life years) and substitute a "cost per remission" approach might pose challenges for new therapies directed against brain tumours. Health Technology Assessment (HTA) agencies have adopted different methods of evaluating and approving subsidisation for new brain tumour therapies and have been open to arguments about the absence of alternative treatments and the lethal and "orphan" nature of the disease. The "cost per remission" approach - subject to further explanation - appears to focus on an aspect of disease management that is not common in brain tumour experiences. Rather than narrowing the focus of HTAs they should be encouraged to adopt a broader perspective e.g. taking into consideration concepts such as the likely beneficial effects of extended survival and improved Quality of life not only for patients but for their caregivers and family.

Grief and depression: Controversy has arisen over plans to revise the criteria for major depressive disorder in the Diagnostic and Statistical Manual of Mental Disorders 5 (D.S.M. 5) to be released in May 2013. Critics fear that depression may become overdiagnosed because of the proposed removal of the "bereavement exclusion" which cautioned against diagnosing depression in someone for at least two months after loss of a loved one, unless that patient had severe symptoms like suicidal thoughts. The nature of the brain tumour journey can cause depression and anxiety disorders not only in patients but also among caregivers and family members.

Neuro-oncology patients and spiritual needs: A survey of nurses who had looked after neuro-oncology patients by University of Nottingham (UK) researchers has found that while there is an awareness of the spiritual needs of patients and their relatives there are questions as to whether or not nurses are the most appropriate professionals to support spiritual care.

Paediatric patients: A review in the Lancet Oncology journal advises using molecularly targeted therapies with pediatric cancer patients only in the context of a clinical trial. "The growth of cancer cells isn't that different than a growth of a 7-pound baby into a 210-pound teenage linebacker. Now, you shut down those growth pathways in an adult and it might not be a big deal, but you shut down those same pathways at a critical time in childhood development and you can have real problems", says Dr Lia Gore from the University of Colorado Cancer Center.

Neuromuscular assessment: Researchers at the Wyss Institute for Biologically Inspired Engineering at Harvard University, the Beth Israel Deaconess Medical Center (BIDMC), and Hebrew SeniorLife, Boston, recently completed the first clinical study of a new rapid neuroassessment device they developed to quantitatively measure neuromuscular performance. It involves a person using a stylus to follow a moving target around a circle on a computer tablet. They now intend to study its use for groups of people with neuromuscular pathologies, such as those who suffered concussions or have multiple sclerosis. Asked by the IBTA's E News if they planned to study its potential use with brain tumour patients they said they had not but are happy to talk with anyone who is interested. Contact Dr Lily Kim ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )  or Dr Leia Stirling ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) at the Wyss Institute.

New book: This is a link to a 3-minute You Tube video interview with Dr Alyx B. Porter of the Mayo Clinic who is the co-author of a new book for patients Navigating Life with a Brain Tumor. It has been published in conjunction with the American Academy of Neurology as part of the Neurology Now book series. The IBTA has not yet seen the book but plans to review it in the near future and will upload a review on its website to join fourteen other brain tumour-relevant books that have been reviewed previously.

African-American and white brain tumor rates: Comparisons of brain and CNS tumor incidence and death rates between African-Americans and whites for 2005-2009 show higher rates for whites in both measurements and for both sexes but there is no discussion of the findings.

ASCO International: ASCO (American Society of Clinical Oncology) International has announced a commitment to doubling its international program over the next four years. Additional priority areas include: oncology training for non-specialists; innovation grants; and virtual mentors. The forthcoming issue of the IBTA's Brain Tumour magazine contains several articles about the challenges (and rewards) of undertaking brain tumour work in developing countries.

Company developments:  The Children's Hospital of Philadelphia (CHOP) and BGI-Shenzhen in China have signed a formal agreement to collaborate on research into next-generation sequencing and analysis of pediatric brain tumours, in support of the Childhood Brain Tumour tissue Consortium (CBTTC). Novocure has launched a website dedicated to its glioblastoma clinical trial.

Thank you for all 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
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Belfast cancer facility 'will boost research and patient outcomes'

  • Thursday, 10 January 2013 21:24

A new integrated cancer research and treatment facility based at Queens University Belfast will boost patient outcomes and offer new levels of research into the disease, experts have said

A new Cancer research and treatment facility in Belfast is being tipped to improve outcomes for thousands of people with the disease.

The integrated laboratory, the first of its kind across the UK and Ireland, is based at Queen's University Belfast.

It is the result of a partnership between Queen's Centre for Cancer Research and Cell Biology and the Belfast Health and Social Care Trust.

Professor Nic Jones, Cancer Research UK's chief scientist, has welcomed the new facility, saying: "This unique resource provides an example to the world by bringing together scientists, doctors and patients to make targeted treatments available sooner for cancer patients in Northern Ireland."

The Northern Ireland Molecular Pathology Lab (NI-MPL) and Northern Ireland Biobank (NIB) can improve the diagnosis of cancer thanks to the analysis of tumour samples at a molecular level.

It is being hailed as the chance to usher in an exciting era of personalised treatments in Northern Ireland by providing new insight into the unique characteristics of each patient's condition.

Professor Manuel Salto-Tellez, Professor of Molecular Pathology at Queen's and lead researcher within NI-MPL, said testing at a molecular level will identify changes taking place within each cancer's unique genetic make-up.

Professor Joe O'Sullivan, Professor of Radiation Oncology said that his new amount of detail presented to doctors "will improve outcomes for patients" by prompting more individualised therapies.

And the new integrated hub carries a twin benefit, as not only will it enable more individually tailored treatments but it can also help to drive new advances in cancer research.

The creation of the new NIB is key to this, as it enables researchers to more efficiently access human tissue and blood samples within a robust framework.

They will then be able to cascade that knowledge to the benefit of fellow researchers around the world.

High-quality clinical material and pathological information is vital for the production of meaningful research, explained NIB Scientific Director Jackie James: "The NIB provides all of this within a timely and strict ethical framework."

Professor Nic Jones highlighted Cancer Research UK's pivotal role in setting up the NIB.

He said that Cancer Research UK has provided support to the team of scientists "who have expertise in using this essential tissue resource to understand how to classify patients into groups so that they can receive the most effective treatment targeted to the faults in their DNA".

The development also reduces the possibility of patients receiving unnecessary treatment with difficult side effects, he continued.

"We believe that nurturing world-class research in Northern Ireland will accelerate progress in research leading to increased survival from the disease," added Professor Jones.

Copyright Press Association 2013

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New Book: The Candy-Floss Head, by Bev Jessop

  • Sunday, 06 January 2013 23:50

We were recently contacted by the Mummy of, Kira, a little girl who sadly passed away after an 8 month battle with a Brain Tumour in May 2012. Kira's Mummy, Bev, has written a book about their journey and we'd like to share the details with you.

The Candy Floss Head is true story about the last eight months of Kira Radcliffe's life. When Kira is unexpectedly and overwhelmingly diagnosed with a terminal brain Cancer in September 2011 at the age of just ten years old her world implodes, as does that of her family. Kira's mummy tells the story of a working mother who faces the daily struggles of the enormity of her only child facing an early death. It is a mother's perspective. The story captures the emotional roller coaster of life as experienced by Kira's mummy who is trying to make sense of terminal brain cancer, the fears, hopes and the enormous love for her precious daughter. She searches for meaning in a life that is fading too quickly. The Candy Floss Head is a story of eternal love between mother and daughter.

To preview the book or to order a copy CLICK HERE.

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New Blog Buddies Added!

  • Sunday, 06 January 2013 21:28
  • Last Updated ( Monday, 07 January 2013 18:28 )

We've been editing our BT Blog Buddies section today and have added a bunch of new blogs to our list!

Check out the list HERE

Or to view Blogs by Brain Tumour Type CLICK HERE

And, if you have a blog about your journey with a brain tumour that you would like to add to our BT Blog Buddies section here's what you need to do.

EMAIL US with the following details:

    Name:

    Type of Brain Tumour:

    Grade of Brain Tumour:

    A little about you:

    Blog name:

    Blog link:

     You can also send a photo with your email which will be displayed next to your above info.

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Ageism in NHS stopping older cancer patients getting treatment

  • Thursday, 20 December 2012 01:34


Ageism in the NHS is stopping some older Cancer patients getting the best treatment according to a survey of oncologists, cancer clinical nurse specialists and GPs by Macmillan Cancer Support1.

The ICM research shows nearly half (48%) think stereotypes and assumptions about older people held by health professionals is resulting in some older cancer patients not getting the best treatment for their cancer and individual needs.

Nearly half of health professionals (45%) say they have dealt with a cancer patient who has been refused treatment on the grounds they were too old and nearly two in three (67%) said they have heard health professionals speak to older cancer patients in a condescending or dismissive way.

These findings echo those of recent reports published by the Royal College of Surgeons2 and the Department of Health3 which suggest that some health professionals make age-based assumptions about people’s ability to tolerate cancer treatment.

The UK has some of the worst cancer survival rates in Europe for older people4.  Our older people are less like to receive treatment than their younger counterparts5,6.

Susan, 66, from Warwickshire, who was diagnosed with breast cancer five years ago, says:

“I’d signed the Chemotherapy consent form but when I went to see the consultant he threw every negative at me about maybe never being the same again and anyway it may not work. I came out of the appointment and burst into tears.

“I asked him later why he’d not pushed it and was told, “You’re 60 not 30. At 30 you’d have more life in front of you”. I’m still alive but I just wish I’d had proper support to make an informed decision.”

Today, Macmillan is launching a new report outlining what health and social care providers in England must do to improve the treatment and care of older people with cancer. The report, Cancer Services Coming of Age, summarises the findings of five pilot projects set up in England with Age UK and Department of Health to improve the quality of cancer care for older people. Based on these findings, Macmillan is calling on healthcare providers in England to:

• Adopt assessment methods that test a patient’s overall physical and mental wellbeing – including cognition, mental wellbeing, nutrition, and social and financial circumstances - to ensure treatment decisions aren’t based on age alone.

• Give health professionals the time and resources to complete specialist training in elderly care to reduce age discrimination in the NHS.

• Establish strong links with the voluntary sector, social services and teams specialising in dementia, falls and continence and address any medical, social or financial issues that maybe preventing an older patient taking up treatment.

Ciarán Devane, Chief Executive at Macmillan Cancer Support, said:

“Health professionals’ concerns about the prevalence of age discrimination in cancer care mustn’t be ignored.

“Unless staff are given the time and training to carry out a proper assessment of a patient’s overall physical and mental wellbeing, some patients will be unfairly written-off as “too old” for treatment. The right practical support, whether it’s transport or help with caring responsibilities must also be put in place so older people needing treatment can actually take it up.

“The number of older people (aged 65 and over) living with cancer in the UK is set to rocket in the next 20 years from 1.3 million to 4.1 million.7 Unless the barriers to timely treatment are tackled now, many older people could die unnecessarily from cancer and services will become unaffordable.”

To read the pilot report, and for more information on Macmillan’s Age Old Excuse campaign, visit www.macmillan.org.uk/ageoldexcuse

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