In this video four brave melanoma survivors share their stories and relate the benefits their care received from treatment at Melanoma Institute Australia.
Thanks to Andrew Rust, Louise Power, Michael Birchall and Elizabeth Liu for sharing their stories.
Here you can find a selection of patient and survivor stories. A heart-felt thanks to our patients for sharing their stories and insights with the world.
Growing up on the beach and surfing since the age of just three, Rick de Leede regrettably disregarded sun-awareness campaigns.
More than 18 months ago, he was diagnosed with advanced melanoma and told by doctors “there’s not a lot more we can do for you”.
Determined not to give up, Rick decided to sign up to a ground-breaking trial at Melanoma Institute Australia – a decision that has saved his life. He moved from Byron Bay to Bondi just to be closer to the Institute.
The 57-year-old joined the Keynote-029 trial at MIA that combines the immunotherapy drugs ipilimumab and pembrolizumab. These drugs boost the body’s own immune system to fight the cancer cells.
After only one treatment, several tumours in Rick’s chest had shrunk. After just three months of treatment, scans showed a “complete response”, meaning that his tumours were gone.
“I feel very much like the trial has saved my life,” says Rick, and describes the staff at the Institute as his “guardian angels”.
Melanoma research has come a long way in recent years which has resulted in life-saving treatment options becoming available.
Surgery was traditionally the primary option for treatment of melanoma. Over the past five years, the use of surgery plus additional treatments, like immunotherapies, has significantly extended life expectancy in people with advanced disease.
“Five years ago, someone like Rick would have survived six to 12 months—that was par for the course for someone with advanced melanoma,” said Professor Georgina Long, medical oncologist at MIA and Principal Investigator for the trial.
“It used to be a death sentence and now I have clinics full of survivors.”
The use of pembrolizumab on its own has resulted in significant shrinkage of tumours in 40-45% of patients with advanced melanoma. By combining the two drugs, as was done in the Keynote-029 trial, results have shown an even greater response: 57% of patients on the trial have had significant shrinkage of their tumours.
Rick has an incredibly positive attitude towards his future now and credits this ground-breaking trial and the team at MIA for giving him a new lease on life.
(Image courtesy of Wentworth Courier)
Sitting alongside Natalie for many of her appointments, Paul was impressed by the passion and dedication of the doctors and nurses at MIA, who often went above and beyond their duties. This dedication inspired him to volunteer his time and expertise at MIA.
“I felt like I could never repay all that the Institute did for Nat,” says Paul. “The effort that everyone put in to looking after her and the genuine care that they showed was critically important to us both.”
Natalie was diagnosed with melanoma when she was only 15 years old and had surgery to remove the mole. But 11 years later, a lump appeared in her groin, followed by spots in her lungs, brain and spine. Natalie's life was extended by an additional 1.5 years after being treated with a BRAF inhibitor and participating in an MIA-led clinical trial on whole brain radiotherapy. However, the disease progressed and less than a year after she married Paul, she lost her fight with melanoma.
“The clinical trials team were amazing. The care, the counselling and the support – in addition to their nursing expertise – was absolutely essential,” Paul says.
Only 6 months after Natalie passed away, MIA started the anti-PD-1 neurological trial that was funded by money raised from Melanoma March 2014. Paul desperately wishes that Natalie could have been on that trial, as it may have bought him more time with his wife.
“Extension of life is the most important thing for a patient,” Paul says. “These new drugs can make such a huge difference; not just to the patient but to the loved-ones that get left behind.”
A project manager by trade, Paul has played a key role in organising our Manly Melanoma March this year.
“I’m giving back by providing my time and skills to help MIA raise money that will ultimately help the researchers find a cure. If I can help patients, and stop their families from going through what I’ve gone through, it’ll all be worth it.”
If you’d like to learn more about volunteering opportunities with MIA, please contact Ariane or phone 02 9911 7200.
Nick Hacket is well known to many of our clinicians – he’s been one of our surgical patients for almost 16 years.
Nick’s melanoma journey began in 1999 when he was first diagnosed after he had a suspect mole removed from his knee. Three years later Nick had lymph nodes removed after he developed lumps in his thigh. Since then he has undergone numerous and often complex surgeries to manage his disease.
One of his greatest challenges has been learning to swallow again after he had part of his larynx removed in 2006 when he spent six weeks in hospital. In comparison he says his recovery in 2014 following brain surgery for a metastatic tumour was straight forward – he was in and out of hospital and feeling well within a few days, straight back to his busy life!
Nick says his family has played a crucial role in helping him fight the battle against melanoma: “The support of my wife and family has helped me have the strength to continue to fight this disease for almost 16 years. Vivien and my children have been by my side, year in year out, every step of the way. In the good times and the bad, knowing I have the support of my family has made all the difference.”
Vivien, who has been married to Nick for 50 years, added: “We’ve all been there for Nick, whether it has been to attend appointments, or to encourage, listen and help as he’s needed us to. Our friends have also been wonderful supporting us as a family; this is something for which we are most grateful.”
Grant Lawrence’s life changed dramatically in August 2014 when he was diagnosed with melanoma. Five months earlier, a small pinkish lump was removed from the top of his shoulder which tests showed was not of concern. However, results from a biopsy in early August revealed melanoma.
Grant's disease was at a stage that required extensive surgery which he underwent at MIA in conjunction with radiation therapy. Despite this intervention, the melanoma had spread and he commenced immunotherapy soon after.
Grant's mum and dad, Carolyn and Darryl, have been by his side throughout his diagnosis and treatment and they now accompany him on the 14-hour round road trip from their home in Nambucca Heads for his treatment at MIA every three weeks.
The family's commitment is paying off as after many months of therapy, there is good news. Grant's scans are showing the therapy has achieved remarkable results, "I am feeling really well. It was the best news that the treatment is doing what it is supposed to,” Grant said.
Grant's parents are dedicated to getting their son well again.
"It doesn't matter if your child is 8, 18 or 28 you just want them to be happy and healthy,” Carolyn said. “We know Grant is getting world-class care from the medical teams at MIA. Our job as a family is to be there for Grant, together with the professionals, giving him additional emotional strength to fight the disease. Travelling a 14-hour round trip every three weeks is a small price to pay to be able to access the excellent care provided by the doctors and support staff at MIA and The Mater Hospital. They are doing an incredible job, and all of the hard work. The trip is easy compared to the challenges Grant is facing."
Grant added, "Mum and Dad have been amazing. My brother and sister-in-law also flew down from Brisbane when I first started my treatment at MIA. They, along with my now one-year-old identical twin nephews have been by my side. I can't tell you the difference it makes to have your family supporting you when you're going through something like this.”
Grant is also grateful to the dedicated team at MIA who are helping save his life.
"My heroes don't wear capes, they're not out there on the pitch playing sport and often don't get the recognition they deserve. My heroes are MIA's doctors, nurses and researchers who are devoting their lives to treating and curing melanoma."
Adam Brown, 34, was diagnosed with advanced stage melanoma in November 2013. After being referred to Professor Stretch at MIA, Adam underwent a bilateral lymph node dissection.
Adam’s fiancée, Kristy, was 8 months pregnant with their first baby when they got the news that the melanoma had spread.
“After my initial diagnosis, they thought they had cleared everything that had spread to the nodes and I got a follow up scan which was clear, but then in late September my fiancé noticed marble like lump near the scar near the original surgery and I was told the melanoma had returned,” Adam says.
“I had a PET scan which showed evidence of a tumour on the right side of the lung. It was after that I met with Professor Georgina Long to discuss clinical trial options.”
It wasn’t until December that Adam got the green light to go on the Anti-PD1 clinical trial.
“It was a very difficult couple of weeks before my son Harry was born. I started to question everything and was wondering how long I would go on for. For some people the cancer can just take hold, so I was questioning how long I would get to spend with Kristy and our baby.
“These drugs have allowed me to be alive for the birth of my son, and I can look at him every day knowing that I will get to see him grow a little bit more.”
New melanoma treatments are making a real difference to patients and their families like Adam, giving them hope when previously there was none.
“MIA gave me a lot of hope that the new research and treatment options could really work for me and were really honest about my condition. There are difficult days but I’ve had a lot of support from MIA and people in my life and it has made it easy for me to face each day with a positive outlook.
“Not thinking about it day in and day out and getting on with life as normal was really important for me to stay focused. I now don’t’ waste any days worrying about the unknown, I spend as much time as I can with Kristin, my baby boy and my family and friends as that is what is important.”
Patients like Adam are benefiting from anti-PD-1 immunotherapy treatment, but 30-40 percent of patients are still not responding, and this is what we need to fix, but we need your help!
“The thing that I have been reminded of after my diagnosis is the developments of recent melanoma treatments. It has come such a long way in a short time with a lot of positive outcomes for patients like me, who five years ago wouldn’t have been so lucky. Hopefully the people not responding now to treatments will be really soon with research and developments that are just around the corner.”
As a mother of three daughters and two step-daughters, the 10th May is a special day for Ruth Davies. Over five years ago, Ruth was told she had a terminal melanoma diagnosis.
“Being a melanoma patient reminds you every day how precious life is and Mother’s Day is a very special day, as I get to spend time with my incredible daughters,” Ruth says.
“My diagnosis has brought my family incredibly close as a support team and we have had quality times as well as emotional times together.
“I’m extremely grateful that I am on anti-pd1 at the moment. I am so lucky to have a high level health service at MIA and the support of doctors and nurses who are giving me a good quality of life that keeps me smiling.”
Mother’s Day brings up lots of memories for Ruth.
“I lost my Mum two days before my 17th birthday and that is something that really changed my outlook on life. Since being diagnosed with this terminal illness it has made me realise again how precious life is and to hold my children close and tell them how much I love them.”
Spending time together is something Ruth and her girls love to do.
“Family is everything. The girls drop everything for their mum, just to sit on the couch and share a meal with me, to come to just hold my hand. I am so blessed to have these gorgeous strong girls in my life.
“Having time with my daughters and sharing laughter with them is a special memory that I have with them that I am so grateful for. You can’t give any more than your time to your children, and to me that is one of the most important things I have learnt as a mother. They know whatever happens, how much I love them and how blessed I am having them in my life.”
Jenny Thulborn was 30 when she noticed the dark mole on her back, a spot she knew was always a bit itchy and prone to burn easily. After being reassured by her GP it was nothing, Jenny went on happily with her second pregnancy not worried that it could be anything serious. It was only after she asked a different GP while in for a perinatal visit to have a look that the mole, that was removed immediately.
The mole that was originally thought as harmless was diagnosed as a malignant melanoma, which had grown 1.55mm. Jenny was told that she had a 75-85% chance that it wouldn’t spread, but to not forget there was a small chance that it could. Three years later, Jenny had another child and was told that the melanoma had cleared which was great news for Jenny and her growing family. Seventeen years later, just before marrying her second husband, Jenny wasn’t feeling herself.
“I had a lot of headaches and I was constantly exhausted, but I thought it was because of the upcoming wedding and the stress of getting it organised,” she said.
“The melanoma was on the back of my mind, but I thought it had been such a long time since it had been removed, it was so long ago.”
“I went and had some scans and it was confirmed I had a tumour on the brain and the lung. It was stage four and they gave me 6 – 12 months to live.”
Over the next few years, Jenny transferred to MIA and tried a clinical trial Zelberof which after 10 months she was taken off from due to severe side effects. It was after being taken off the drug when Jenny was classed as disease free.
“Unfortunately though, 18 months later the melanoma had come back in my brain and I had three tumours removed, they were recurring tumours so had stereotactic radio surgery. Then in November last year I had a seizure and they found more tumours in the brain and the lung tumour had returned. That’s when I started Anti-PD-1.”
Since being diagnosed with melanoma, Jenny has been proactive in warning people about the dangers of the sun and that it isn’t always the case of getting the mole ‘cut out’. Jenny and her husband Tony are on the committee for the Coolangatta Melanoma March and hope that through this initiative they will be able to raise more funds and awareness for melanoma. They are involved with Seagulls and the Strand in Coolangatta to promote Melanoma March, which will be on Sunday 22 March.
“Money that was generously raised from last year’s Melanoma March is how the Anti-PD-1 trial was able to be funded and it is what is saving my life at the moment. These drugs give you hope that you have another day, and hope is all you can have when you have melanoma, you don’t know what the future will hold.”
In June 1978, 27-year-old Mike was enjoying life with wife Val and young family, Matt – aged five – and Nicole – aged one. His career in banking with the Commonwealth Bank was starting to take off, having received his first major promotion in October 1976.
However, life was about to change. A chance examination by Val of a mole on Mike’s back as he got out of the shower caused her concern. The mole, which had always been there, was bleeding and Val thought “it didn’t look normal”.
Succumbing to Val’s pleas to have it checked out, Mike made an appointment with Val’s GP. The GP took one look at the mole and said it had to be removed immediately for pathology examination. Pathology quickly confirmed that it was a malignant melanoma. Fortunately, the GP referred Mike to Professor Gerald Milton, head and founder of the Sydney Melanoma Unit (the predecessor of MIA).
Within a week, Mike and Val were sitting in Professor Milton’s rooms at The University of Sydney discussing what comes next. Surgery was the option recommended because of Mike’s age and his young family. It all seemed fairly straight forward and that would be that.
The only inkling Mike had that perhaps the procedure wouldn’t be so straight forward was the mention prior to being wheeled into surgery that he was going to have a “fairly large” operation. He woke from the surgery to find himself bandaged from the shoulders to almost the waist with surgical drains stitched into both sides of his torso.
Mike had had a bi-lateral excision of the lymph glands from the armpits and an excision stretching from one shoulder to the other necessitating a large skin graft taken from his thigh. Fortunately other tests while in hospital confirmed that the disease had not spread to the major organs.
Mike, thought well that’s that… Then came the bad news. Because the melanoma had penetrated to a depth exceeding 3mm, chemotherapy was prescribed to reduce the risk of recurrence. So in August 1978 a monthly cycle of chemotherapy commenced. It involved intravenous drugs each day for a week. Blood tests followed each cycle the week prior to commencement of the next cycle to ensure Mike’s system could tolerate continuing treatment. Side effects were severe nausea, particularly on day one of each cycle and general lethargy. Mike endured every cycle and his treatment concluded in June 1980, some 23 months later.
Mike continued under Professor Milton’s care with regular consults which relied on external physical examinations because there was no scanning technology available at the time.
In July 2015, Mike will celebrate his 65th birthday and has had no recurrence of melanoma. He has four grandchildren and retired from the Commonwealth Bank in 2005 in an Executive position.
Mike has decided to give back to the Institute that saved his life and is now one of our regular volunteers.
You can read more about Mike on his blog post.
In August 2013, 22-year-old Emma’s life was on track. Coming to the end of a year volunteering in Timor, Emma was about to start a Masters in Occupational Therapy and was coming home to an exciting new relationship.
But then her world came tumbling down.
While still in Timor, Emma found a lump under her left arm. Alarm bells went off straightaway, as a year prior she’d had a melanoma removed from her left shoulder. She saw the embassy doctor in Timor straight away and was advised to head straight home.
Within a week, a biopsy and PET scans were taken, with surgery booked to have the lymph nodes removed from under her left arm.
Emma was diagnosed with stage 3 melanoma. Based on the pathology of her lymph nodes, she was told there was a 70 per cent recurrence rate in the next five years.
A few weeks later, when investigating whether or not she was eligible for a new clinical trial to try and stop stage 3 patients progressing to stage 4, she was told some devastating news: her melanoma had spread to her liver. Emma’s 70 per cent recurrence rate had now changed to only having a 10–15 per cent chance of being alive in five years.
Emma started treatment on a MEK inhibitor (trametinib) and a BRAF inhibitor (dabrafenib), accessed on compassionate grounds. Unfortunately at her first 3-month scan, the disease had continued to spread, and fast, infiltrating her liver, lungs, pancreas, spine and subcutaneous tissue. Emma, at only 22, was told she had three months to live.
Determined not to give up, Emma joined a clinical trial of the immunotherapy PD-1 drug, MK3475. “I’m happy to report that right now, the treatment is working,” says Emma. “And when it stops working, I’ll jump onto whatever else is available. There’s no cure for advanced melanoma, but I know that these drugs can buy me time, and time is everything to me.”
Emma has taken to writing a successful blog, called Dear Melanoma, as a means to express her emotions openly and honestly, and to help make sense of her situation.
“I hope my blog can go beyond being just an aid for me to cope with my melanoma journey, but also help other people or families touched by this disease,” says Emma.
* Emma Betts sadly passed away at the age of 25 in April, 2017.*
“Life is there to be experienced”
At 28 years of age, Andrew had been training in surf boats with his local Surf Life Saving Club when he visited his doctor for what he thought was just a simple hernia in the groin. It turned out to be much worse: Andrew was diagnosed with advanced melanoma.
At the time of his diagnosis in 2002, Andrew was working long hours supporting a young family, with his 18-month-old daughter being the joy of his life. “I was rocked. I had no idea how serious melanoma was, the prognosis was terrifying,” said Andrew.
Initial surgery removed a secondary tumour in the groin lymph nodes. The primary melanoma was never found. Unfortunately the cancer recurred in the groin and pelvis, and several gruelling operations followed in a short space of time. Andrew underwent radiotherapy to help stop another recurrence, however the melanoma was very advanced. It took Andrew several months to recover from the intensive treatment needed to fight the disease.
Four years later Andrew was free of any sign of melanoma. Life had almost returned to normal when a check up in 2006 revealed his melanoma had recurred again in the lymph nodes, this time deep in the abdomen requiring more surgery. After this surgery, Andrew became eligible to participate in a vaccine trial. The trial tested a new, experimental drug treatment, aiming to improve the health of patients suffering with melanoma and stop it returning.
Since the initial surgery, Andrew has endured 10 major operations including the removal of tumours from his throat, lung and lymph nodes.
“It was terrible when I was first told but it makes you do a lot of good things you wouldn’t probably have ever done,” said Andrew. He has enjoyed seeing his daughter grow up, loves to surf, and now runs his own business. “Life is there to be experienced,” says Andrew. “No more saying ‘I must do that one day’.”
However, in October 2014, Andrew received news that new tumours had developed and his surgeon opted not to operate.
“I had gone so long with no reoccurrence of melanoma. I almost started to think that perhaps I could finally put the angst of the past 12 years behind me. The melanoma's return is another reminder to me just how deadly it is and to never take things for granted,”
Instead of undergoing more surgery, Andrew has commenced treatment with dabrafenib and trametinib, and is going well.
“It is amazing to know that you're going through treatment for melanoma and have absolutely no pain or illness, compared to what I have experienced with my past surgeries, chemotherapy and radiotherapy. It really just says it all about the fantastic people who have discovered these types of new treatments.”
Andrew, together with his good mate and fellow melanoma survivor, Jay Allen, recently walked from Sydney to Melbourne for their 900KMFORACURE fundraiser, which saw more than 900 people pledge to get their skin checked and raised more than $160,000 for melanoma research.
“It seems surreal that only a few months ago I was walking with my good friend Jay, telling as many people about medications like I'm about to try and how they are making a difference to patients long term survival. Now it's my challenge ahead”
We wish Andrew all the best for his treatment and thank him for his ongoing support of MIA.