New information added to the ‘Learn’ pillar:
Links to new research articles:
- Treatments for IDH mutant glioma (Research Articles). These two literature reviews provide an overview of the latest trials and developments in IDH-mutant treatments for gliomas. They discuss IDH inhibitors such as vorasidenib and ivosidenib and the outcomes of the INDIGO trial as well as other targeted therapeutic strategies.
- Vorasidenib in IDH-mutant low grade gliomas (Research Articles). This is a research paper and summary about a study (INDIGO trial) using a medication called Vorasidenib in over 300 patients with grade 2 glioma who had an IDH mutation. The research showed the drug significantly slowed tumour growth in the patients taking Vorasidenib compared to patients taking a placebo, and suggests there may be a new treatment for these types of gliomas.
Links to new websites and other resources:
Brain tumours or their treatment can sometimes cause aphasia – speech, language and communication difficulties. We have recently added some links to resources and websites about aphasia and brain tumours, and ways to manage aphasia:
- Aphasia and Brain Tumour (Australian Aphasia Association).
- Speech and language difficulties factsheet (Brain Tumour Charity UK)
- Acquired brain injury and communication (Speech Pathology Australia website)
- Find an Aphasia community group in your area (Aphasia Community)
- The role of allied health and rehabilitation after a brain tumour diagnosis (Cancer Council NSW)
We have also added the following new links to resources that may be particularly helpful for young adults with a brain tumour (but some could also be helpful for older adults too):
- AYA Can-Sleep: A guide to sleep for young people who have cancer (Peter Mac Cancer Centre)
- Thinking Ahead: Your guide to school, study and work (Peter Mac Cancer Centre)
- Getting to Grips with General Practice (Peter Mac Cancer Centre) – a guide on how to engage with GPs to maximise your health and wellbeing during and after cancer.
- Being OK…Being You. A guide for young people who identify as LGBTIQ+ and have cancer (Peter Mac Cancer Centre).
- Youth Cancer Services (Australian national service) – a national service that works with more than 25 hospitals and health services across Australia ensuring all young people with cancer have access to the best, age-appropriate care and support. Patients may be treated at a YCS in a lead hospital, or the YCS team can work with local doctors to plan and provide the best treatment for a young person wherever they are.
- CANTEEN – an Australian not-for-profit that provides tailored support for young people aged 12-25 who are impacted by cancer.
- Young Carers Network – a nationally coordinated resource to raise young carer awareness, provide information, and direct young carers to appropriate pathways for support.
- More resources for young people with a brain tumour that were recommended by our guest speakers can be found listed on our webinar page: Navigating the challenges of a brain tumour as a young adult.
New webinars and video resources in the ‘Connect’ pillar:
We have hosted a number of Q&A webinars over the last few months, and the video recordings are available for you to watch online. You can visit the ‘Connect’ pillar, then click on ‘Events’, then click on ‘Past Events’ to see the entire back catalogue of webinar videos. The most recent ones include:
- Choosing your treatment team & navigating the system. Our guests on this panel will be able to give you some practical information and answer your questions that may help you choose your treating team and navigate the health system, including how to select your treating team, how and when to get a second opinion, what are the differences between getting treated in the public vs private system, and what is the role of a General Practitioner (GP) in your treatment team?
- Managing the financial burden of a brain tumour diagnosis. Even if you are receiving treatment through the public system, there can be many unexpected costs and financial challenges to navigate after a brain tumour diagnosis, especially if an income-earner in your household needs significant time off work due to the tumour and its treatment, or for caring responsibilities. In this webinar we touch on topics such as: NDIS and Centrelink supports, Wills and Power of Attorney, Superannuation, and Insurance.
- Navigating the challenges of a brain tumour as a young adult. Join our panel of fantastic guest speakers to find out more about navigating some of the unique challenges faced by young adults after a brain tumour diagnosis. This session is for young adults with a brain tumour diagnosis, and also their family & friends who may be looking for ways to better support their loved one.
- Palliative & Supportive care – holistic services that can improve your quality of life. Palliative care can be offered at any time after you are diagnosed with a brain tumour, alongside other standard treatment options, to ensure you experience the best quality of life for as long as possible. We have organised a fantastic panel of palliative care experts from Victoria to answer your questions and to learn more about the ways that palliative and supportive care can play a role in living life well after a diagnosis of a brain tumour.
- Managing cognitive and behavioural changes. A brain tumour or its treatment can cause changes to behaviour, personality and cognition. These can be some of the most challenging symptoms for you and your family and friends to adjust to. Join our panel of health care professionals to learn more about how a brain tumour can cause changes to behaviour, personality or cognitive function, and what strategies and supports exist for helping to manage these symptoms.
- Shared experiences: those who love and care. Join us to hear from our 3 wonderful guest panellists as they generously share with you some of their experiences and personal stories of loving and caring for someone diagnosed with a brain tumour.
Looking for information and can’t find it?
If you have any requests for more information on a specific topic, please send us an email on BT-Online@unimelb.edu.au and we will do our best to source the information to add to the site, or organise a webinar with experts able to answer your questions on that topic.
You can also join the Brain Tumours Online social media Community to connect with others, find out what’s new on the site and contribute ideas for the webinars.