March 2019 e-News

Welcome to the Brain Tumour Alliance Australia (BTAA) e-News
(March 2019) 
This month we have an important document about ANXIETY & DEPRESSION and, following up the extraordinary response to last month's article on CARER BURNOUT, a helpful guide for carers. We have a research article about a PARKINSONS DISEASE treatment being offered to brain tumour patients, an article about some immunotherapy research at WALTER + ELIZA HALL and something from THE HEALTHY BRAIN PROJECT. We also want to remind you about our IT'S OKAY TO ASK booklet and we have a series of videos from a BTAA FORUM in Brisbane last year. You may also want to check out our updated e-News Library.
we walk together
 
BRAIN TUMOURS, ANXIETY & DEPRESSION
People can develop brain tumours at any age and having a brain tumour can affect a person’s mental and physical health. For many, the outlook is uncertain, which can place great emotional strain on those affected, as well as on their family and friends.

Here is a Guide produced jointly by Beyond Blue and BTAA that may help you should you feel that anxiety and/or depression is a concern for you. We would like to point out that anxiety and depression doesn't affect patients only, it's also just as applicable for carers and family members.

We have also included an article from Psychology Today about 'Rethinking how we heal from Anxiety & Depression' that you may also find helpful.

Read more ... 

A Podcast of this article, entitled 'Telling a Better Story about Health & Healing', is also available.

Listen to the Podcast ...
 
There is also an article from The Brain Tumour Charity (UK) featured in the IBTA e-News talking about talking - how it helps manage anxiety and depression.

Read more ...
  
If this article has raised issues for you or if you’re concerned about someone you know, call Lifeline on 13 11 14 or Beyond Blue on 1300 22 46 36
READ THE GUIDE ... 
 
 
 
LOOKING AFTER THE CARER - CONTINUING THE DISCUSSION
The response to the article about 'Carer Burnout' that we ran in the February e-News was quite extraordinary and so we've reprised that article with the 'Caregiver Handbook' from the the American Brain Tumour Association.

Caring for the Carer is not only a very significant issue in the brain tumour community but a top priority. So it's more than appropriate that we offer all the support we can to the carer.
 
 
GAME CHANGING PARKINSONS DISEASE TREATMENT FOR BRAIN TUMOUR PATIENTS

A potentially game changing treatment for Parkinsons disease offers new hope for brain tumour patients. A new system for drug delivery into the brain used for treatment of Parkinson’s disease could also be used to carry chemotherapy and other drugs to people with brain tumours.

The Convection Enhanced Delivery device system consists of a port connected to four tubes placed precisely where they are needed within the brain using robot-assisted neurosurgery. Drugs are then infused through the port into the tubes and into the brain: in this study, infusions were given every four weeks over a period of 18 months.
 
HARNESSING IMMUNE CELLS AGAINST BRAIN CANCER
The Australian Government has announced successful applicants for the Priority-driven Collaborative Cancer Research Scheme which aims to improve outcomes for patients affected by the disease.

Among the Institute scientists to receive support was Dr Misty Jenkins whose laboratory is focussed on designing new immunotherapies, an innovative treatment that redirects a patient’s own immune cells to kill cancer.

Dr Jenkins said she was grateful to receive funding from Cancer Australia for research to find new and improved immunotherapy treatments for childhood brain cancer.
 
 

  HOW INJURIES CHANGE OUR BRAIN AND HOW WE CAN HELP IT RECOVER

This article from The Conversation is part of 'The Healthy Brain Project' series on Changing the Brain, about what’s happening in our brain in various mental states and how we can change it for better, or worse. There are links to other interesting articles attached to this piece. 

Injury to the adult brain is all too common. A brain injury will often show up on brain scans as a well-defined area of damage. But often the changes to the brain extend far beyond the visible injury. 
 
IT'S OK TO ASK
We want to give you advance notice of the upcoming launch and release of new brain tumour resources in Brain Cancer Action Month - May 2019.  BTAA is working with colleagues to organise patient forums in capital cities across Australia during May so that patients, carers and their families can see and understand the new resources. The new resources, including 'It's Okay to Ask', will be available in 10 additional languages and provide valuable information for anyone starting out on the brain tumour journey.

Look out for the date of the Patient Forum in your capital city. The e-News will keep you posted so you can register to attend. The new resources will be available on the BTAA website from May 2019. Here is the current 'It's Okay to Ask' booklet.
 

READ 'IT'S OKAY TO ASK' ...
 
 

 

HELPING BRAIN CANCER PATIENTS ACCESS DRUGS
Australians with brain cancer deserve the same affordable access to drugs and effective treatments as patients overseas. Australian brain cancer patients and their families shouldn’t have to miss out on treatments just because they can’t afford them, nor should they have to spend tens of thousands of dollars, or travel overseas, to receive them. Brain cancer is distressing enough. Australia must do better.

AVASTIN is currently being looked at by the Pharmaceutical Benefits Advisory Committee (PBAC) with a view to the drug being included on the Pharmaceutical Benefits Scheme (PBS). e-News will keep you up to date on any developments following consideration by the PBAC. Many organisations, including BTAA, COGNO and CBC have made submissions to the review.  

Submissions closed on 13 February. Check out what Cure Brain Cancer says about Avastin.
 

READ MORE ...
 
 
BTAA COMMUNITY FORUM (BRISBANE) - OCT 2018
We have 4 videos for you to look at from a Community Forum held in Brisbane during COGNO in October last year - they cover a wide range of topics - being your own best advocate; an update on Glioma trials; exercise as medicine and enhancing psychological well-being. Thank you to the Mark Hughes Foundation and to the QLD Cancer Council for sponsoring the event with us and thank you QLD Cancer Council for producing this video series. Click below to watch the videos that interest you.
 
Being your own best advocate ...
 
Update on Glioma trials ...
 
Exercise as medicine ...
 
Managing cognitive effects and enhancing psychological wellbeing ...
 
 
DON'T KEEP IT A SECRET
We kicked this off last month and the response so far has been a positive one. We'd love you to tell us some of the topics you'd like to see covered in the e-News. We've even added a few categories. We'd like to keep it going. Choose as many, or as few, as you like. We'll publish the results down the track. Secret Squirrel says it's safe to talk.
 
LET US KNOW ...
 
 
GET THE E-NEWS
If you are not a subscriber and would like to get our e-News each month you can subscribe here. It's quick and easy.

For our current subscribers - forwarding to a friend is a great way to help raise awareness. Use the "Forward to a Friend" button below.

We have also improved the e-News Library. You can now browse through previous editions of the e-News and select articles by Category. 

Visit the E-News Library ...

Subscribe to e-News ...
 
IBTA E-NEWS
Don't forget the IBTA e-News, including:

Why some brain tumours respond to immunotherapy. 

Read more ...
 
Timing of Immunotherapy treatment could be key. 

Read more ...

7 challenges to curing primary brain tumours. 

Read more ...
 
 
 
 
BTAA Support Line Number 1800 857 221
 
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DISCLAIMER*: The material provided in this e-newsletter and on our website is general in nature. It is made available on the understanding that BTAA is not engaged in rendering professional or medical advice. Before relying on the material users should carefully evaluate its currency, completeness and relevance for their purposes, and should always obtain appropriate medical advice relevant to their particular circumstances.
 
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