An update on Paul - Your impact
‘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.’
Before Christmas, we shared Paul’s survival story, and how groundbreaking 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.
Paul Webb’s melanoma story began in 2014. A mole on his neck was bleeding and getting bigger. A biopsy from a local skin cancer specialist led to Paul being diagnosed with Stage II melanoma. After this distressing news, Paul had the melanoma removed by Melanoma Institute Australia surgeon Associate Professor Jonathon Stretch.
After a recurrence in 2016, Paul had more surgery followed by radiotherapy with radiation oncologist Professor Angela Hong. Paul was now cancer-free.
Then one day in June 2018, Paul fell over in the shower. He told his wife Linda that he wasn't feeling well. they immediately went to the hospital emergency department where he presented with headaches, confusion and trouble speaking.
Paul was diagnosed with Stage IV melanoma. He had seven large melanoma metastases in his brain and five in his body.
Previously, patients with brain metastases usually survived only four to five months, and even less in those who had large tumours with symptoms.Given teh advanced nature of Paul's melanoma, his prognosis was grim.
“When I found out I had Stage IV melanoma the emotions were quite surreal. We couldn’t believe it. I seemed so well until I ended up in emergency. I had no idea how serious it was.”
A few days after Paul was diagnosed with Stage IV melanoma, he had emergency brain surgery after one of his melanomas caused a brain bleed and a stroke. He then started on a combination of two immunotherapies (nivolumab and ipilimumab) under the care of medical oncologist, Associate Professor Alexander Menzies along with whole brain radiotherapy with radiation oncologist Professor Angela Hong.
Paul’s treatment plan was inspired by the game changing discoveries from the world’s first Anti-PD1 Brain Collaboration (ABC) clinical trial in 2017. Results from this trial showed 49 percent of melanoma patients with brain metastases treated with the combination immunotherapy were still alive three years later. Historically, patients with brain metastases were not eligible to participate in clinical trials because their prognosis was so dire. This new treatment gives patients with advanced melanoma a fighting chance.
“Immunotherapy is an absolute game-changer for how we treat patients like Paul with advanced melanom which has spread to the brain...brain metastases are no longer a death sentence,” said medical oncologist, Associate Professor Alexander Menzies.
After immunotherapy, Paul was feeling very well. Some of the brain metastases had shrunk, but a new tumour appeared at the back of the brain, so he had targeted radiotherapy. All the tumours in his body had disappeared.
“After I was on the immunotherapy drugs for three months, I asked Associate Professor Menzies how do we know if it’s working? He said, 'We know it’s definitely working because if it wasn’t, you wouldn’t have survived more than a few weeks.’
This Christmas, some 18 months later, the Webb family will celebrate both Paul’s survival and the arrival of a new grandson.
“It’s just amazing that I’m going to be around to meet my grandson. So Christmas will be a real time of celebration for the family this year. I could have missed the birth of my grandson, but I’ll be there and I’ll be in his life.”
Paul is doing very well and Associate Professor Alexander Menzies is confident he is going to continue to do well into the future.
Paul’s story is a great example of how ground-breaking science and research can save a life and keep a family together despite a serious diagnosis and grim odds.
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.*