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A news service for the Australian brain tumour patient and caregiver community
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BTAA eNews December 2015

Dear friend of the brain tumour patient and caregiver support community

BTAA is the umbrella organisation providing a strong national consumer voice for brain tumour patients, carers and families. BTAA’s focus is on support and advocacy 

Once again it is the holiday season. BTAA wishes you all the best for you, your friends and family over the summer. We are here if you need us. Our Freecall number 1800 857 221 (free to call from landlines), Facebook page, and email support service (btaa@shout.org.au) will continue operating. See the support available near you here https://www.btaa.org.au/page/26/support-organisations 

We look forward to working with you in 2016. Our third national summit held in October made it clear we are a single movement with a clear message to the public. We raise our voice on your behalf as we grow.

In this issue:

Letter from the Chair
Message of support from the Minister
Brain Tumour Facts October 2015
COGNO 2015
SNO 2015
COGNO 2016
Major International Events in 2016
Advanced Care Planning
Clinical Trials News
BTAA Thanks
Support is Available
Useful links

Letter from the Chair

Hello all from your incoming Chair, Susan.  I have stepped up to the role to enable Matt to take a break after seven years in the role. The committee and team taking BTAA forward include seven new committee members, of which five are persons living with a diagnosis of a brain tumour while three have hands on experience as carers of people with brain tumours. Welcome Diana, Janet, Jen, Julia, Nicola, Trish and Philip. Anita, Catherine, Mark, Rigoula and I continue with BTAA. While moving off the committee our stalwarts Mary Anne, Denis and Matt remain part of the team.

We at BTAA are all volunteers working to give our community a stronger national voice with your support.

This issue looks back at activities during International Brain Tumour Awareness Week in October 2015 and forward to some big events in 2016. 

BTAA and the Cancer Council Queensland (CCQ) co-hosted the BTAA 3rd National Summit, a lunch and special educational forum at the CCQ Brisbane offices on 22 October. The event was supported by the Cure Brain Cancer Foundation including assistance with the international speaker Professor Martin van den Bent and news on clinical trials presented by Michelle Stewart. These sessions should be available on video early in 2016.

Several BTAA team members stayed on after the BTAA Summit to attend the Cooperative Trials Group for Neuro-Oncology (COGNO) Annual Scientific Meeting 2015 in Brisbane on 24 to 24 October 2015. See Diana Andrew’s report below.

I headed to Spain to the 2nd International Brain Tumour Alliance Summit on 26-27 October in Sitges. Thanks to the IBTA for the assistance to enable me to meet over 60 people from 27 countries. It was a great opportunity for networking, sharing best practice and picking up some new skills and a greater understanding of the various issues in the international brain tumour patient and caregiver community. And to see a bit of Spain. A long way but worth it.

At the end of November we again applied for a grant from Cancer Australia to develop some resources in a range of languages. Let’s hope we are successful this time.

Regards

Susan
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Message of Support from the Minister

Health Minister Sussan Ley provided a welcome message of support to our community at the BTAA Summit. Thanks Minister.
See it here: https://www.btaa.org.au/news/50/minister-of-health-sussan-ley-summit-announcement
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Brain Tumour Facts October 2015 *

  • In 2013–14 there were 5,758 hospitalisations due to primary brain cancer, with the average length of stay being 9.9 days. 
  • Primary brain cancer accounted for 3.5% of all palliative care hospitalisations in 2012–13, the 7th highest among all the cancers. 
  • In 2007–11, people with primary brain cancer had a 22% chance of surviving for at least 5 years relative to the general population. Five-year survival was slightly higher for females (23%) than for males (21%). 
  • At the end of 2009, there were an estimated 6,206 living Australians who had been diagnosed with primary brain cancer sometime in the previous 28 years (when 
  • national records began). This included 2,756 people who had been diagnosed in the past 5 years. 
  • There were 1,290 deaths due to primary brain cancer (ICD-10 C71) in 2013.
  • Brain cancer was the leading cause of cancer death among children aged 1–14 in 2011–2013 (94 deaths; 6.5 per cent of all deaths; 0.8 deaths per 100,000 population) and the third leading cause of death from all causes – after land transport accidents (202; 14 per cent; 1.7 per 100,000) and certain conditions originating in the perinatal period and congenital conditions (128; 8.9 per cent; 1.1 per 100,000). 
  • Brain cancer was the 2nd leading cause of cancer death among young people aged 15–24 in 2011– 2013 (55 deaths; 1.5 per cent of deaths; 0.6 deaths per 100,000 population) – after leukaemia (59; 1.7 per cent; 0.6 per 100,000). 
  • Brain cancer was the 3rd leading cause of cancer death among adults aged 25–44 in 2011–2013 (335 deaths; 2.2 per cent of deaths; 1.7 deaths per 100,000 population) – after breast cancer (459; 3.0 per cent; 2.4 per 100,000) and colorectal cancer (353; 2.3 per cent; 1.8 per 100,000).

 

See the fact sheet and the data sources here.
Contact: Susan Pitt Chair c/- btaa@shout.org.au
 
*Note this data was provided to BTAA by AIHW as a special data service on a fee for service basis. You are free to reproduce it but please acknowledge the AIHW source and BTAA.
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COGNO 2015

As newly elected BTAA Committee Member, I came away from my first attendance at the 8th COGNO Annual Scientific Meeting in Brisbane 23 & 24 Oct 2015 in respectful awe.
Gratefully sponsored by BTAA, to attend, I felt embraced by a highly committed collective of COGNO neuro-oncology clinicians and scientists from leading Australian medical research institutes and from overseas. Indicative of the vitality of the COGNO Meeting, four international renowned Professors attended as guest speakers. Professor Kenneth Aldape (Department of Pathology, Toronto General Hospital), Professor Vinjay Puduvalli (Department of Neurological Surgery, Ohio State University), Professor Amy Heimberger (Department of Neurosurgery, University of Texas) and Professor Martin J van den Bent (Brain Tumour Centre, the Netherlands).
Professor van den Bent delivered a comprehensive update about the COGNO CATNON intergroup trial, a global collaborative study involving patients (diagnosed with anaplastic oligodendroglioma, anaplastic oligoastrocytoma or anaplastic astrocytoma) and researchers from Belgium, the UK, the US and Australia. The main purpose of the study is to determine whether chemotherapy given in addition to radiotherapy or the addition of chemotherapy after the completion of radiotherapy will improve overall survival and the time to tumour progression.
Other COGNO clinical trial updates presented were the VERTU trial evaluating combination radiotherapy and adjuvant temozolomide to improve progression-free and survival outcomes of GBM patients (Dr Mustafa Khasraw). And the CABARET trial researching the effect of the combination of bevacizumab plus carboplatin versus bevacizumab alone on progression-free survival in patients with recurrent grade IV glioma (Dr Liz Hovey) - Source www.cogno.org.au.
Program topics included the present and future of Grade 11 & Grade 111 glioma, management approaches to recurrent high-grade glioma, technological advances in neurological technique and imaging, and personalising treatment of brain tumours.
The emergence of identifying brain tissue cell biomarkers was a stimulating thread during the presentation. Molecular pathology and immunogenetics are the ‘now’ thinking for diagnosis and treatment, and integrating biomarkers into brain tumour classification is offering hopeful advancement toward individually targeted therapy. In my view, evolving immunotherapy is pushing the profession so close to the tip of an exciting change to the rigidity of the current and traditional treatment standard of chemotherapy-radiation for high-grade glioma.
I am not medically trained, not a scientist, a neuro-oncologist nor a neurologist. I attended COGNO in the capacity of BTAA Committee Member, Cancer Council WA Community Advocate and in entirety as the loving wife of Jeff, a fun beautiful, and a gentleman who lost his 5-month battle with an inoperable GBM earlier this year.
The COGNO delegation offered so much to be hopeful about for people with brain tumours and those confronting the diagnosis in years to come. From what I heard, there is promise in evolving diagnostic tools, neurosurgery techniques and treatments and, here in Australia we are indeed privileged to have a caring group of very, very clever people under the COGNO umbrella who quietly continue in tireless professional dedication for people with brain cancer.
Being part of support and advocacy for the brain tumour community can at times feel like we are fighting for those diagnosed with a rare, neglected cancer. But what COGNO represents is nothing short of world class. An impressive group intellectual commitment to excellence in neuro-oncology in Australia through global collaboration.
COGNO Chair Professor Mark Rosenthal inspired my deep respect in his closing address when from my perspective, he spoke genuinely from the heart. Professor Rosenthal truthfully acknowledged just how challenging and complex brain cancer is to diagnosis and treat.
But, to those deeply knowing about brain cancer but non-COGNO people in attendance, he said, “Just know we are all working hard!”
Yes, Professor Rosenthal, I can honestly say I believe you. From my seat in the delegation, you and your COGNO peers are.
My praise to you all.
My deepest gratitude to Susan Pitt BTAA President for so generously approving subsidy of my trip from Perth to Brisbane. And Catherine, you were the best share BTAA buddy.
By Diana Andrew, BTAA committee member, Perth.

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SNO 2015
BTAA supported Dr Danette Langbecker | Ph.D. BHlthSc(PubHlth) | NHMRC Early Career Research Fellow ’s attendance at SNO 2015. Danette’s travel was subsidised through the generosity of the family of the late Nicola Scott.  

By Danette Langbecker, Research Fellow, Supportive & Palliative Care Research Group, Institute of Health & Biomedical Innovation, Queensland University of Technology, Brisbane.

I was thrilled to have the opportunity to attend the Society for Neuro-Oncology 20th Annual Meeting and Education Day in San Antonio, Texas with the support of BTAA. It was a massive conference, attended by over 2,200 delegates, with I am pleased to say, a recognisable Australian group of clinicians and researchers. Being such a big conference, there were sessions on all different aspects of neuro-oncology pertaining to drug treatments and surgical approaches, but also (as is my focus) on and quality of life.

The first day of the conference was the Education Day, which discussed modifiable factors that may affect patient outcomes such as diet, physical activity and sleep, for both adults and children with brain tumours. Although there has been a lot of research into these factors in other cancer types, particularly breast cancer, we are just beginning to see research being done on the influence of these in the brain tumour area. The sessions showed the huge amount of potential for interventions and changes to practice to try to improve both cancer outcomes and quality of life, and I am very interested into building research in this area.

The main conference then expanded on this with several sessions discussing quality of life issues. It was excellent to see a recognition that all studies need to consider the impact of treatments on quality of life, symptoms and other patient-reported outcomes in addition to survival, and we had some good discussions on what outcomes should be collected and the best ways to collect this data. The latest results were presented from studies examining specific issues which are important to people with brain tumours and their families, such as fatigue, cognitive functioning and the experience and needs of family caregivers. Some novel findings were presented, for example with regard to the quality of life of people with brain tumours in developing countries and the impact of glioma on pregnancy. I had the opportunity to meet with other researchers in this area and discuss ideas for future studies and how we may be able to work together for a common goal of improving brain tumour care.

So I have now returned to Australia with extended knowledge, some great connections and a renewed enthusiasm for my research. This can be a challenging area in which to conduct research because brain tumours are rare, but I think there is such a need for it and opportunity to make a difference – I couldn’t imagine doing anything else! Many thanks to BTAA for providing some financial assistance to make this trip possible.

Read more about Danette’s projects here: 
http://eprints.qut.edu.au/view/person/Langbecker,_Danette.html
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COGNO 2016

Planning is well underway for COGNO 2016. BTAA will be supporting the brain tumour supportative care nurse guru Mary Lovely’s visit to Australia for COGNO 2016 and onto New Zealand on the return journey to San Francisco. Mary’s full title is Associate Adjunct Professor Mary Lovely Ph.D., RN, CNR. Mary is the First Author for Clinical Nursing Practice Guidelines for Adult Brain Tumor Patients through the American Association of Neuroscience Nurses.
Read more about COGNO including the keynote speakers here

Save the Date – 11 – 15 September 2016: http://www.cogno.org.au/docview.aspx?id=278
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Major International Events

BTAA has grants available to enable allied health professionals to attend international events. Email btaa@shout.org.au if you would like more information. 
Events include but are not limited to:

  • ISPNO 2016 – 12 – 15 June in Liverpool, UK. The 17th International Symposium on Paediatric Neuro-Oncology.
  • ASCO 2016 – 3 – 7 June 2016 in Chicago, Illinois. The American Society of Clinical Oncology meeting.
  • SNO 2016 – 17 – 20 November 2016 in Phoenix, Arizona, USA.
See more events and dates here: http://theibta.org/events-and-conferences/
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Advanced Care Planning
In November, Julia Roberston travelled from Brisbane to Melbourne to attend the 2015 Advance Care Plan and End of Life Care National Conference. Julia writes:
“While the first day was tailored for Victorian’s and specifically aged care situations, the information provided was certainly relevant outside of Victoria. Advance Care Plans and End of Life Care submissions are relevant for all of us, in particular to brain tumour patients.”

An advance care plan or end of life care plan is a way for you to express your wishes if you are in a position where you cannot communicate for yourself. You can make decisions about the type of care you do or do not want, the situations you would like those actions to be taken. It is a conversation we all need to have. In the event or a serious accident, there are procedures so that each of us would have a voice. Apart from expressing your own feelings towards your advance care having the conversation does not have to morbid or depressing. If you involve your family in the process, they will know your wishes ahead of time. It takes the burden from them should difficult decisions need to be made.

Advance Care Plans should be made in consultation with a doctor or advance care plan agent. There are some things you may need to have explained and some things which may need to be further expanded upon. 

At this point in time, each state has their own advance health care documents. It would be fantastic, and much easier for all of us it there was a national advance care plan document which could be filled out and be valid in all states. 
You can find out more about the conference and resources in your state at:
http://advancecareplanning.org.au/news-events/events/2015-advance-care-planning-end-of-life-care-national-conference-melbourne-v/conference-program

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Clinical Trials News

The BTAA Clinical trials page has been updated with information about the GBM Agile trial to commence in mid-2016 as well as the Rindopepimut Phase 3 study for newly diagnosed patients with EGFRviii positive GBM.
Read more here
Email btaa@shout.org.au for more information.
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BTAA thanks

BTAA thanks its donors. We are a volunteer-only organisation that receives no funding or concessions from any governments, asides from indirectly as donations to us are tax-deductible. Your funds continue to help grow the organisation and each day it is more capable, committed and able to assist to patients and caregivers.
Read how easy it is to fundraise for us: 
• Wear a Hat for a Day for BTAA (we sent you a kit including a poster and money box).
• Give up a birthday for BTAA
• Participate in a fun run - look for BTAA on the list of charities in the big runs. 
• Host a morning tea
• Do a beach walk
• Bike ride somewhere far away
See more https://www.btaa.org.au/page/21/fund-for-btaa
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Support is available

To talk with experienced caregivers, call BTAA on the Freecall number: 1800 857 221, and see the support groups available in your local area at www.btaa.org.au – look for support organisations.
Cancer Council Support
Cancer Connect telephone (13 11 20) 
Brain Tumour Patients Telephone Support Group Freecall 1300 755 632 Monday - Friday 9 am - 5 pm or email tsg@nswcc.org.au 
Cancer Connections (online) www.cancerconnections.com.au
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Useful links

See a range of useful links https://www.btaa.org.au/page/29/useful-links 
Including: 
Brain Tumour Australia Information www.btai.com.au
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Thank you for reading.

Editor: Mark Dalliston

Assistant Editor: Susan Pitt


Brain Tumour Alliance Australia
btaa.org.au


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Note: After a three year hiatus from its monthly eNews service, it was resumed based on feedback from convenors’ of Australian support groups that such information assists their work. The eNews is normally sent on the morning of the first Friday every month, with exceptions such as this month's edition. BTAA welcomes feedback on the content and format of these eNews services. Please contact btaa@shout.org.au.
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