April 19' E-News

Welcome to the Brain Tumour Alliance Australia e-News

April 2019
For some of us, "waking up and smelling the coffee" is but a dream, we can't smell anything, so we have an article on how those of us who have lost their smell might get it back. We also have some exciting news out of the PETER MAC CANCER CENTRE around CAR-T CELL research, an article about the BLOOD-BRAIN BARRIER and some great news about some research funding to help CHILDREN with brain cancer. The conversation about medicinal cannabis rages on, we have a news item from the ABC, who have waded into the debate. We would also like to let you know about some important DIET & NUTRITION and TELE-HEALTH services from the CHRIS O'BRIEN LIFEHOUSE. We also have some great CLINICAL TRIALS news also out of the Lifehouse and to finish off we have the inspiring and heart warming DEB'S STORY.
 

    HOW 'SMELL TRAINING' COULD HELP IMPAIRED SENSE OF SMELL


Those of us who can still smell the coffee, or a rose, or a good curry, probably don't know what the fuss is about, however for those brain tumour patients who have lost the sense of smell, there are a few of us, this article from The Conversation may provide a ray of hope. The article links dementia to a loss of a sense of smell, so whilst it's not specific to brain tumours, those of us affected may find the 'smell training' referred to in the article worth investigating.

Editor's Note: I declare a personal interest. I lost my sense of smell following surgery in 2016. I know of others in the same boat. Some have had it return. It's possible - the smell of fresh coffee awaits.

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Category: Quality of Life
 

CAR-T CELL THERAPY 

Chimeric Antigen Receptor (CAR)-T Cell therapy is in the news with new research showing that, whilst currently only effective in treating blood cancer, CAR-T Cell Therapy has the potential to treat solid tumours, such as brain tumours. We have news of the Peter McCallum Cancer Centre in Melbourne being set to be the centre of a new wave of treatment. There is also a short, helpful video explaining what a CAR-T cell is.
 

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We also have a link to an article from The Brain Tumour Charity (UK) - they mention similar research being led by Dr Misty Jenkins, from the Walter + Eliza Hall Institute in Melbourne.
 
READ MORE


Category: Medical Research

 

 THE LAST FRONTIER? LIFTING THE LID ON THE BLOOD-BRAIN DIVIDE


While vaccines and infectious diseases provide major challenges for immunologists, there are other aspects of immunology that are no easier to crack. For many years the brain was considered a fortress, cut off  from the rest of the body. A hard bony skull protected it from outside threats, while the tight cellular junctions of the blood–brain barrier shielded it from inner ones – including the immune system. There were good reasons for this assumption: immune activation is associated with inflammation and swelling – processes there’s little space for within the rigid confines of the skull – while cell death and the regeneration it unleashes would surely result in the disruption of learned actions and memories. 
 

READ MORE

Category: Immunotherapy

 

   GREAT NEWS ABOUT CHILDRENS BRAIN CANCER RESEARCH FUNDING


                      FROM THE CHILDRENS HOSPITAL FOUNDATION


The Children’s Hospital Foundation is proud to launch Australia’s first research centre solely focused on paediatric brain cancer, treatment and survivorship.

The Centre for Child and Adolescent Brain Cancer Research (CCABCR) will unite the ‘best of the best’ in paediatric brain research to bring new hope to children and young people fighting the disease.

The centre will bring together world-leading researchers, doctors and facilities to boost brain cancer research capacity, and improve outcomes in Queensland and beyond, playing a vital role in the Australian Brain Cancer Mission, which aims to double survival rates and improve the quality of life of people living with brain cancer over the next 10 years.

READ MORE
 

                    FROM THE ROBERT CONNOR DAWES FOUNDATION


Thanks to brain cancer industry collaboration and support from the federal government, The Australian and New Zealand Children's Haematology/Oncology Group (ANZCHOG) and the Australian Brain Cancer Mission are set to receive $10 million over five years!

READ MORE

Category: Paediatric Care

 

                            THE RISE OF MEDICAL MARIJUANA


Thousands of Australians are now using medicinal cannabis to treat conditions such as chronic pain and anorexia.

The ABC has revealed that more than 3,100 medicinal cannabis scripts had been approved by the Therapeutic Goods Administration (TGA) since the Federal Government relaxed restrictions in March 2018.

According to experts, these people were just the tip of the iceberg. It has been estimated as many as 100,000 Australians self-medicate with cannabis they've acquired illegally.

Advocates of the drug say it offers a safe and effective solution to people with intractable medical conditions.

But critics, and some of Australia's leading medical experts, argue there's limited quality evidence to support the use of medicinal cannabis in most conditions.

So, what do we know about it? And why? In some cases, is it still so little.
 

READ MORE

Category: Alternative Therapies
 

                          DIET & NUTRITION FOR CANCER PATIENTS


A healthy diet is vital to maintain a good baseline of health and wellbeing during cancer treatment and afterwards. Emerging evidence suggests that diet and weight management as well as regular physical activity are linked to better survival rates, diminished cancer recurrence for those in remission and even disease prevention.

We do get inquiries about diet and nutrition so we thought it would be a good idea to provide this link to a relevant page on the Chris O'Brien Lifehouse website that may come in handy for anyone needing some guidance.

Check out also iheard.com.au 
(the link is provided under 'More Information') – a website run by the Cancer Council that discusses myths and facts relating to cancer.


LIFEHOUSE DIETICIAN / NUTRITIONIST

 

Category: Quality of Life/Diet
 

                                 LIFEHOUSE TELEHEALTH SERVICES


Still at the Lifehouse - they also have a very good Telehealth service if you live in a regional or remote area. Please take advantage of this service if you can't get to the Lifehouse. Click on the LivingRoom@Home option on the web page to book a video call.
 


Category: Patient Support Projects
 

WELCOME NEWS FOR BRAIN CANCER CLINICAL TRIALS

Chris O’Brien Lifehouse welcomed the announcement by Federal Minister for Health Greg Hunt of $4.5 million of funding dedicated to four brain cancer clinical trials.

Director of neurosurgery Dr Brindha Shivalingam recently developed a blood test for glioblastoma together with researchers from the University of Sydney and Royal Prince Alfred Hospital. We published the Brainstorm paper about this research in the December 2018 e-News.

She said, “For science discoveries to benefit patients promptly, every newly diagnosed brain cancer patient needs to be registered onto a database that holds not only their medical history but also blood and tissue samples from their tumour with comprehensive genetic analysis.”

 

READ MORE

Category: Clinical Trials
 

DEB'S STORY
I was what you would call average.  I was married to a guy I had met at work. We were both employed by the Gold Coast City Council. At 34 I had the dog, the mortgage and kids were on the way as I was pregnant with our first son. We had looked at how we would cope financially after the birth and decided that realistically if I was to be a stay-at-home mum we really needed a second income.
 
READ DEB'S STORY

Category: Patient/Carer Stories
 

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Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences


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Post-operative radiation improves survival for children with ependymoma, trial indicates.
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