INSIDE Research updates . . . . . . . . . . . . . 2 Saving lives this summer . . . . . 3Improving support for our patients . . . . . . . . . . . . . . . . . 4Meet Melanoma Life Saver, Peter . . . . . . . . . . . . . . . . 5 Your impact . . . . . . . . . . . . . . . . . . . . . . 8

Melanoma Institute Australia NewsletterEdition 1, 2020

Sydney mother of two, Jennifer Benfield, faced a shock diagnosis of advanced melanoma in 2018 when tumours were found in her lung and kidney.

‘My world came crashing down - I just didn’t think something like this could happen to me,’ said Jen. ‘My biggest fear was not being around to see my two young children grow up. It was so hard explaining melanoma to my kids, but I tried to be honest with them and also re-assure them that I had the world’s best team in my corner.’ Jen understands first hand how crucial it is that Melanoma Institute Australia continues to receive funding to progress life-saving research. After participating in a clinical trial and undergoing surgery, Jennifer is now disease free.

Research saves lives

Momentum

MELANOMA INSTITUTE AUSTRALIA NEWSLETTER

To support MIA’s research please donate now at melanoma.org.au/donate

‘I am so lucky to have had access to the best minds in melanoma research and treatment, and am so grateful for their dedication each and every day to saving lives from melanoma,’ said Jen.

‘Being able to tell my children that I now have no evidence of disease was the best day ever! Thanks to the tireless work of the Melanoma Institute Australia team, I now have hopes for a promising future with my family.’

Jen and her family are urging all Australians to support life-saving research by joining a Melanoma March event near them. Register at melanomamarch.org.au

‘ Being able to tell my children that I now have no evidence of

disease was the best day ever! ’ JEN BENFIELD - Stage IV melanoma survivor

EDITION 1, 2020 1

The recent weeks have been particularly difficult for many Australians due to the devastating bushfires. Our thoughts are with all impacted by the fires, including members of our own MIA community. Our sincere thanks and gratitude go to all RFS and emergency service personnel and volunteers who battled tirelessly to protect life and property. MIA was proud to donate 300 bottles of Sunsense SPF50+ sunscreen and 100 long-sleeved UPF30+ shirts for use by evacuees and emergency service personnel working in fire impacted areas at the height of the crisis.

It is such community spirit and support that also buoys us here at MIA and keeps us on track as we move towards our goal of zero deaths from melanoma. I am proud to share with you highlights from recent months including our hugely successful ‘Game On Mole’ campaign which engaged Aussies from all walks of life, as well as the vital input of our Speakers’ Hub volunteers and our community fundraisers. I am also delighted to share details of our new partnerships with Melanoma Patients Australia, Amie St Clair in Wagga Wagga and melanomaWA, all of which will see improved services and support for melanoma patients and their families across Australia.

Finally, I invite you to join us in our upcoming Melanoma March campaign, and as we all take steps to beat this killer disease. With more than 24 family-friendly events around the country, there is an event for everyone. If you have been impacted by the bushfires and need assistance in joining us, please get in touch.

Welcome to our Summer edition of Momentum

Research update

Matthew Browne Chief Executive Officer Melanoma Institute Australia

We are pleased to say that once again our team has had a busy few months presenting at conferences and meetings about research and clinical trial results. This will have a profound impact on patient care internationally.

The European Society for Medical Oncology (ESMO) 2019 Congress in Barcelona saw follow-up data from the ground-breaking ABC (Anti-PD1 Brain Collaboration) trial presented, as well as five-year survival rates from the longest-running Phase III trial of combination immunotherapy in melanoma patients. The overall survival for those patients on combination ipilimumab and nivolumab was 52%, with 36% of patients progression-free. Also on display at ESMO were four posters from our researchers. Post-doctoral researcher Dr Ines da Silva was awarded the best poster presentation at ESMO.

MIA was also well represented at the Society for Melanoma Research (SMR) 2019 Congress in Salt Lake City, Utah. Delegates from around the globe presented recent breakthroughs and advances in melanoma research, many of which MIA has played a large part in. MIA was again well-represented in the poster session at SMR, with four poster presentations given by members of our translational research team. Dr Tuba Nur Gide presented her first poster after completing her PhD.

We are immensely proud to have both been named Highly Cited Researchers, according to the Clarivate Analytics Highly Cited Researchers 2019 list. We are humbled to be two of only 14 researchers from The University of Sydney who made it onto the international list. This recognition is also reflective of the entire research team effort undertaken at MIA.

We are eager to face another year as we continue to work simultaneously on a number of fronts – from prevention, to early detection, diagnosis and treatment of early stage disease, to tackling advanced melanoma and combatting resistance and super progression, as well as survivorship and supportive care.Any life lost to melanoma is one too many. With your support, we will continue our research effort until we achieve our mission of zero deaths from melanoma. 

Professor Georgina Long and Professor Richard Scolyer Co-Medical Directors Melanoma Institute Australia

2 MELANOMA INSTITUTE AUSTRALIA NEWSLETTER

How do you get people to start a conversation about an important health message? Often you have to be bold to cut through and that’s certainly what our 'Game On Mole' campaign has done this summer. The edgy campaign leveraged the iconic Aussie catch-cry ‘game on, mole’ to encourage young Australians to be sun safe, to be aware of any changes to their skin (by taking photos at the beginning and end of summer), and to seek medical advice if anything had changed.

Melanoma is the most common cancer affecting 15 to 39-year olds, with one Australian expected to be diagnosed with melanoma every half an hour.We were overwhelmed by the positive feedback! Thank you to the thousands of Aussies who bought ‘Game On Mole‘ t-shirts, took selfies, shared t-shirt pics on social media and started life-saving conversations around sun safety and skin health.Swimmer Cate Campbell and other influential Australians also joined the conversation and threw their support behind the campaign.

Adam Brook, a sparkie and personal trainer from Tamworth, is encouraging everyone to be aware of any changes to their skin.

Adam delayed getting a small mole checked and is now being treated for Stage IV melanoma.

It was Adam’s hairdresser who first noticed an unusual looking mole near his ear, then his mum kept reminding him to have it checked. By the time he did, his melanoma was Stage III. Adam had surgery to remove the melanoma, along with 55 lymph nodes in his neck. After one round of immunotherapy, scans revealed melanoma cells had spread to his liver, meaning he was Stage IV. Adam’s immunotherapy treatment has now intensified and his resolve to overcome melanoma continues.

Five years ago, the prognosis for Stage IV melanoma patients like Adam was dire. However, thanks to ongoing research, game-changing advances

have been made particularly in the area of immunotherapy which boosts the body’s natural immune system enabling it to attack the cancer itself. Immunotherapy made its debut in treating advanced melanoma because chemotherapy was not an option, and melanoma research is now leading the way for other cancers.

Saving lives this summer: ‘Game On Mole!’

Adam’s future is positive thanks to his mum and immunotherapy

Early detection is vital as Olympic swimming champion and melanoma survivor Cate Campbell knows from personal experience.

Top fashion influencer and founder of Elle Effect, Elle Ferguson, supported Game On Mole, encouraging young Australians to be sun-safe.

‘Rack off you fish-face moll is my contribution to the Australian vernacular, made famous in Puberty Blues. So I’m very happy to be supporting this campaign called Game On Mole!' Kathy Lette.

‘Melanoma is a deadly disease and the best chance of beating it is if you get it early.' Jason Clare MP, Federal Member for Blaxland and recent melanoma survivor, with 103 year-old melanoma survivor Bert Collins.

‘If one person gets a skin check after it, then I am happy to tell my story a million times.’ Adam Brook.

Over the past decade, life expectancy has tripled for

some advanced melanoma patients. Further research

is vital to find out why some patients are still not responding.

EDITION 1, 2020 3

Improving support for our patients Melanoma Patients Australia and Melanoma Institute Australia have announced a new multi-year agreement to provide enhanced support services for patients nationally. The new MPA/MIA agreement will focus on the introduction of a Tele Health Nurse Pilot Program to provide better access of services for melanoma patients; increasing the capacity and expertise of MPA’s Peer to Peer volunteer facilitators and volunteer support staff; enhancing face to face support groups within NSW and integration of these into MPA’s national support network; and joint involvement in events including patient information sessions and MIA’s national Melanoma March campaign.

Melanoma patients and their families throughout the Riverina region will also benefit from strengthened and sustained melanoma services with the merger of Amie St Clair and Melanoma Institute Australia. It will provide immediate benefits by doubling the level of services provided to melanoma patients in the Riverina, including increased capacity of the free melanoma nursing services, the establishment of clinical trials in Wagga Wagga, opportunities for melanoma patients within the region to contribute to MIA research, and melanoma education opportunities – both professional (GPs/Clinics) and community-based through the SunSafe Student Ambassador program.

‘Our shared vision is zero deaths from melanoma, no matter where you live, and this is a fantastic opportunity to enhance the effective delivery of treatment and support services to melanoma patients in this region.’ Annette St Clair, Co-founder of Amie St Clair Melanoma TrustMIA is also delighted to be merging with melanomaWA, providing increased resources dedicated to reducing the impact of melanoma in Western Australia. ‘ With survival rates continuing

to improve, the need for this collaboration to strengthen the support services available to our patients and families, is, thankfully, even greater. ’ Victoria Beedle, CEO of Melanoma Patients Australia

Real people, real stories Diagnosed in November 2011 with rare ocular melanoma, Steve Thornton from Brisbane became known as The Pirate to his family and friends after enucleation of his left eye. Less than five years later, Steve felt he was about to walk the plank again when his GP discovered four tumours in his liver and one in his kidney.

Steve was accepted onto an immunotherapy clinical trial. ‘Fill me with the good stuff!,’ he said, a mantra that he followed each treatment day.

During his melanoma treatment, Steve went on the search for stories to give him hope, but soon discovered most cancer bloggers and reports had grim outcomes. This prompted Steve and his wife Lane to create their own blog ‘Walking the Plank’ to show the raw emotions of frustration and fear mixed with strength and determination to power through a tough journey.

‘The ups and downs of the cancer journey are challenging but I’m determined to overcome this disease,’ melanoma survivor, Steve ThorntonSteve is now clear of Stage IV melanoma and through MIA’s Speakers’ Hub, wants to share his story of hope thanks to new treatments now available. He also wants to increase awareness about melanoma which he knows is far more than ‘just skin cancer’.

Our Speakers’ Hub is a network of melanoma patients, survivors and their families willing to share their melanoma stories and educate others about sun safety.

You can help us raise awareness about melanoma and sun safety by booking one of our trained speakers, like Steve, for your next community event, fundraiser or workplace. Learn more at melanoma.org.au or email us at thehub@melanoma.org.au

‘ The two highly respected organisations will be working together on a regional and national level regarding awareness, education, support, and research. ’

Mr Martin Slabbert, Chairman melanomaWA

MELANOMA INSTITUTE AUSTRALIA NEWSLETTER4

5 STEPS TO PROTECT YOUR

SKIN FROM THE SUN

LAST YEAR OUR MIA COMMUNITY

HELPED TO FUND:

8 new clinical trials

and183 new patients began treatment on clinical trials

HATWear a broad- brimmed hat

PROTECTIVE CLOTHINGWear sun-protective clothing that covers your back, shoulders, arms and legs.

SUNGLASSESWear wrap-around sunglasses.

SUNSCREENApply a broad-spectrum SPF 50+ sunscreen every 2 hours and after swimming or exercise.

SHADESeek shade, especially in the hottest part of the day.

Peter Reed was 68 years old when his wife noticed a small red pimple behind his ear whilst the couple was travelling in Queensland. As soon as they arrived home, he had it checked out. What he thought was a pimple was actually melanoma, which had progressed to Stage III meaning it had already spread to his lymph nodes. Peter was shocked to hear the news and within days was seen at Melanoma Institute Australia. Dr Robyn Saw removed four lymph nodes behind his ear. Two years later, melanoma was found in lymph nodes in his neck and despite surgery and radiation, follow up scans revealed Peter had 13 tumours and had progressed to Stage IV.

‘I was sent to see Professor Georgina Long and a week later started on Keytruda,’ Peter recalls. ‘The response was nothing short of a miracle as seven infusions later I was all clear. I ceased treatment after two years.’

As somone who knows how serious melanoma can be, Peter decided to become a Melanoma Life Saver by making a regular monthly donation. Every one of his donations is helping other patients like him by funding research, advancing clinical trials and helping provide latest equipment.

‘I always donated to MIA but I wanted to make it more regular as monthly donations allow the team of researchers to have a better idea what they can do with a regular budget coming in each month,’ said Peter.

Meet Peter, one of our longstanding Melanoma Life Savers

SUPPORTER PROFILE

‘As a survivor of Stage IV melanoma, I feel privileged to have belonged to the MIA family for the past five years.’ Stage IV melanoma survivor, Peter

Become a Melanoma Life Saver

To join Peter as a Melanoma Life Saver or upgrade your current gift, please contact our friendly Donor Care Coordinator, Laura Svatos on 1300 882 353

EDITION 1, 2020 5

If you share our vision, please consider including a gift for Melanoma Institute Australia in your Will.

Your gift could fund a new program or special technology — accelerating our progress to end melanoma.

Leave your lasting legacyMelanoma Institute Australia’s purpose is to prevent, treat and cure melanoma.

‘We have a very early start for the final day of the conference, with the first session being an update on neoadjuvant therapy. Both of MIA's Co-Medical Directors, Professor Richard Scolyer and Professor Georgina Long, talk about their ongoing work in neoadjuvant therapy during the session – MIA is really playing a large role in moving the field forward.

The next session is on melanoma immunology – this is my area! It’s vital for us to understand the immune system’s reaction to melanoma as the immune system could give insights into how melanomas are allowed to develop and spread. The talks in this session look at a lot of different immune cell populations and how particular molecules may eventually be able to act as ‘biomarkers’ – characteristics we can test to assess whether or not a patient will respond to different types of immunotherapy. My PhD, and the work of many others across MIA, is focused on the immune system in melanoma, so it was really great to be able to reinforce and expand on my knowledge in this session.

I really hope that I’ll be able to come again next year – until then, I’ll be back at work in the lab!’

To read more Lab Life articles visit

melanoma.org.au/research/lab-life

Lab Life Conference DiaryA day at Society for Melanoma Research (SMR) Congress 2019 by Grace Attrill

Please call Gabriella Lang on 02 9911 7239 or email gabriella.lang@melanoma.org.au for a confidential discussion

‘When I began working in melanoma research 20 years ago, we knew very little about the genetics of melanoma – we didn’t understand why some families were susceptible to this disease and we had no drug treatments that improved the survival of patients with advanced melanoma. There have been many improvements in patient outcomes in the last decade, but there is so much more to do.’ Biomedical Scientist, Professor Helen Rizos

MELANOMA INSTITUTE AUSTRALIA NEWSLETTER6

Leave your lasting legacyMelanoma Institute Australia’s purpose is to prevent, treat and cure melanoma.

Community eventsCanberra Marathon 2020 – 4 AprilRegister at www.runningfestival.com.au

Sydney Morning Herald Half Marathon 2020 – 17 MayRegister at www.smhhalfmarathon.com.au

Gold Coast Marathon 2020 – 4 and 5 JulyRegister at www.goldcoastmarathon.com.au

Run Melbourne 2020 – 26 JulyRegister at www.runmelbourne.com

For more information, contact our Community Partnerships Manager, David Holmes on fundraise@melanoma.org.au or register directly for these exciting running events.

Take steps to beat this killer disease. Join one of 24 family-friendly Melanoma March events around the country. Check the details for your local March and register at melanomamarch.org.au

Want to bring Melanoma March to your workplace or school? Contact Annabel to learn how you can host your own!

Annabel Egan, Event Manager +61 2 9911 7325 events@melanoma.org.au

6to6 Swim For MelanomaRenée Marchment was diagnosed with melanoma when she was just 24‘As a Stage III melanoma survivor, I am forever grateful for the care and treatment I received and continue to receive from the incredible team at Melanoma Institute Australia,’ said Renée.

To raise awareness about melanoma as well as much needed funds to help fuel ongoing research at MIA, Renée embarked on a marathon swim from 6pm to 6am at the Crescent Head Aquatic Centre pool. Renée completed a total of 1,168 laps covering a distance of 29.2kms and raised a whopping $16,576 to help MIA achieve our goal of zero deaths from melanoma. Thank you Renée!

The Power of Peers Successful SunSafe Student Ambassador Program

If you or your workplace is interested in fundraising for MIA please contact (02) 9911 7326 or email fundraise@melanoma.org.au

Belmont High School at Lake Macquarie was the 2019 winner, with MIA attending the end of year assembly to present the award to students Brieanna Anderson, Alana Cross, Sophie Pilgrim and Amelia Velkouski, along with $1,000 for the school to use on sun safety initiatives.

The first 20 years of life are a very vulnerable time for sun exposure. The earlier good sun safety habits start, the better. And who do teenagers more often take notice of? Their peers! Our SunSafe Student Ambassador Program harnessed the power of peers to spread the sun safety message. Students from Years 8 and 9 represented their schools at a comprehensive one-day program learning about sun safety, melanoma and presentation skills. The program was held at six east coast locations with 62 schools participating. The students then went back to their schools and delivered a sun safety presentation to their peers. An award was given for the most powerful sun safety presentation by student ambassadors at their schools, with an incredible 44 video entries received.

‘This program is a fantastic initiative with a crucial message for young people. Wide exposure to these types of opportunities will see a positive shift in the health and wellbeing of everyone.’ Braydon Giles, St Johns Anglican College, Brisbane

72020 SUMMER EDITION

The SunSafe Student Ambassador Program will return this year. Schools can register their interest at melanoma.org.au/sunsafe

The ABC-X trial was developed by MIA for Stage IV patients with brain metastases.There are few clinical trial options for these patients due to their poorer outlook than Stage IV patients whose melanoma has not metastasised to the brain. Pioneered by Professor Georgina Long, ABC-X builds upon results from the ABC trial which was the first trial to demonstrate that patients with advanced melanoma in the brain can be successfully treated with combination immunotherapy using nivolumab and ipilimumab. The 3-year follow-up results were presented at this year’s ESMO congress by Professor Long, who detailed that 49% of patients remained alive at 3 years, and patients who had not experienced any progression of their melanoma at 1 year continued to remain free of progression at 3 years. The ABC-X trial will determine whether adding radiotherapy to nivolumab and ipilimumab will increase the effectiveness of treating brain metastases with immunotherapy.

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P: 1300 882 353

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‘ Since we began the clinical trials of targeted therapy and immunotherapy, we saw patients getting better and living longer. These treatments are part of the greatest breakthrough in medicine of the last 50 years. I strive to continue research to improve treatments for all patients with melanoma such that no one will die from this disease. ’Assoc. Professor Alex Menzies, Medical Oncologist

Your impact

Before Christmas we shared Paul’s survival story, and how ground-breaking science and research enabled him to survive advanced melanoma and meet his first grandson.

Paul’s treatment involved a combination of two immunotherapy drugs as well as whole brain radiotherapy. Following his amazing response, MIA began further studies with the launch of the ABC-X clinical trial.

Thanks to the generosity of our MIA community, funds raised from the Christmas Appeal are supporting

ongoing research to give other grandfathers like Paul a better chance of survival.

Every single donation brings us closer to achieving our mission of zero deaths from melanoma.

‘Your donations mean that people like me can experience the wonderful joy of having our family members still with us in the future. Thank you so much,’ said Paul’s wife Linda Webb.

‘Thank you for your kind words of support. It’s hard to believe that after initially facing only weeks to live, here I am some 18 months later still going strong.’ Stage IV melanoma survivor, Paul Webb

for Advanced Melanoma Patients

Improved Survival Rates

from <10% to >50%

3-yr survival:

from <15% to >60%

2-yr survival:

from 25% to 75%

1-yr survival:

5-yr survival:

from <5% to >50%