Living with melanoma has become more about managing a chronic disease than defeating cancer for Albury's John Ambrose.
“They don’t use the word ‘cure’,” he said.
“One of the things people don’t understand, and we didn’t, is even if you get a melanoma cut out of your skin, it can get into your bloodstream and typically attacks your lungs and brain.
“The best way of getting rid of melanoma is surgery, but for example in my case it was in both lungs and was inoperable.”
Mr Ambrose first had melanoma removed from under his skin in 2008, and CT scans did not indicate any problems for two years.
But a nasty cough led to a biopsy in 2013 that revealed multiple tumours in the lungs, and his wife, Laraine, can still recall the doctor’s response.
“The surgeon shook his head and basically said ‘There’s nothing I can do for you’,” she said. “We couldn’t get in quickly enough to the cancer clinic that was at Wodonga because the cancer was moving so rapidly, and that’s why we sought out the Melanoma Institute of Australia.”
The MIA's co-medical director Professor Georgina Long was assigned Mr Ambrose’s oncologist, and organised for him to be included in a clinical trial which decreased the size of his tumours by 70 per cent within months.
He was clear of melanoma for 15 months. But it wasn't long before the cancer resurged with aggression.
“That’s when the decision was made to put me on Keytruda and typically people going on that get a partial or full response," Mr Ambrose said. “Mine was a partial response, and I still had melanoma in my lungs growing slightly.
“The complication was the pulmonary artery which runs between your lung and your brain, had been implicated with melanoma and they had to reconstruct that artery during surgery.
“After that, I went and had further scans expecting everything to be clear, and found that I had a tumour on my brain.”
A battle ahead
One step forward, another two back.
Mr Ambrose's battle has been an experience shared by Thurgoona Golf Club acquaintance Ivan Lane, who was diagnosed in 2013. He also had a devastating prognosis.
“I had a lump in the groin mis-diagnosed as a strangulated hernia and it took nearly three months before they did a biopsy and proved what it was,” Mr Lane said.
“I was told I had four months to live and I hear that’s so common because it can spread so quickly. I had a lot of operations removing tumours and originally they said ‘everything’s gone’, but six months later it was all back.
“I had a small tumour on the outside of the brain that doubled in size quickly, and I was lucky to be operated on by a brilliant brain surgeon in Sydney.”
But as the people in scrubs explained, it’s impossible to eliminate the risk of melanoma returning, with millions of tiny cells in the blood potentially being the problem.
So Keytruda (pembrolizumab), an immunotherapy drug approved for treatment of melanoma in 2015, was employed for Mr Lane’s treatment.
“It’s made my tumours stable,” he said.
“I don’t need any more drugs, but the side effects have been as bad as getting cancer.
"I had 12 doses and they had to take me off it, because my liver would have failed.
“If the tumours start growing again, they don’t have anything to replace Keytruda, so it’s a catch-22.”
Part of the reason Keytruda is so successful is also why it can have harmful side effects.
IN OTHER NEWS:
It’s part of a treatment called immunotherapy, delivered as an infusion in the vein every two to four weeks.
It can cause organs to be implicated, due to an overactive immune system, Mr Ambrose explained.
"Your body doesn’t recognise melanoma, so your immune system doesn’t fight it," he said.
"What the immunotherapy drugs are designed to do is fire up your immune system to identify the melanoma is there and attack it."
Keytruda had its successes and failures for both Mr Lane and Mr Ambrose.
In December, a new melanoma was found in Mr Ambrose's bowel.
"I'm now on more immunotherapy with Yervoy and Opdivo," he said.
"The hope is it will get rid of the melanoma I’ve got now and slow down any others that may be in my system.
“At the end of the day, my oncologist Georgina Long said we’ve still got some more things in our toolbox."
Melanoma research moving forward
There is no “typical” melanoma case, but the cancer has always had a known interaction with the immune system, making it different to other cancers.
Professor Long said research into melanoma had been crucial for all cancers and that due to new treatments, it was moving towards “no longer being a possible death sentence”.
“Immunotherapy is the ‘penicillin moment’ for cancer therapy, and the research that has made this possible across multiple cancers happened first in melanoma,” she said.
“It’s already proven to be an effective treatment for patients with various types of cancers, making it the most promising new cancer treatment approach since the first chemotherapies were developed in the 1940s.”
Professor Long said immunotherapy has had astounding results, but not in all cases.
"We’re starting to understand why patients develop resistance – and if we can tackle this by individualising and targeting therapy, we will impact not only melanoma, but all cancers," she said.
"Donations made to research will allow us to eventually know up front which patients are likely to respond to current immunotherapy treatments."
Mr Lane and Mr Ambrose don’t intend their stories to scare others, but to warn them.
Melanoma is the most common cancer in young Australians and overall one person dies from melanoma every five hours.
If detected early, 90 per cent of melanomas can be cured with surgery alone.
But the best approach is always prevention.
"The main thing is that people need to be aware of the primary things like Slip, Slop, Slap, but if they do develop some imperfection on their skin, get it checked," Mr Ambrose said.
"The sun is not your friend; there are consequences to being burned.
"I’ve been lucky in that I’ve accessed clinical trials, and in that most of the time, my lifestyle hasn’t been all that affected."
For Mr Lane, a retired NSW fire station commander and senior instructor, having to put away the clubs due to his health and lymphoedema in his leg has hurt the most.
“Every three months my specialist at the cancer hospital gets a report that everything is OK and being stable is the worst thing, because you’re either on the verge of getting sicker or getting better," he said.
"We played with a veteran’s group and they are all over 55 and we have several cancer sufferers
"Some are going good, some will be OK, and some won’t. I feel guilty that I’m still going sometimes.
Mr Lane celebrated 50 years of marriage with his wife Sandra last year, and for that he is especially grateful.
"It’s cost me my golf, which I love, but I keep saying ‘I’m still here’," he said.
An event will be held for the first time in Albury next weekend to fundraise for the Melanoma Institute and their research.
Mr Ambrose and his wife Laraine will lead the charge.
"It’s been running for eight years now in various places around Australia, to pay tribute to survivors and those who have died, and to raise awareness and money for Melanoma Institute's research," Mrs Ambrose said.
Registrations begin from Sunday, March 24 at 9am at Hovell Tree Park, with the walk to commence at 10am.
Mr Ambrose said because of what the MIA had achieved in melanoma, new immunotherapy treatments were increasing the life expectancies of people with a variety of other cancers.
"I’ve been going to the Melanoma Institute now for six years and they’ve done an enormous amount for me; it’s giving something back," he said.
"Chemotherapy just doesn’t work with melanoma … the research effort is now around immunotherapy."
The MIA aims to raise $1 million through Melanoma March.
The institute recommends the following ABCDE process to monitor your skin:
- A: is for asymmetry, where one half of the mole or spot does not match the other
- B: border, where the edges of the spot are irregular or blurred
- C: colour, where it differs over the entirety of the mole or freckle - differing shades of brown, black and sometimes red or white
- D: diameter, where the length across the spot is larger than 6mm
- E: evolving, where any of the above occurs or there is itching or bleeding, see a GP for a skin check.
Receive our daily newsletter straight to your inbox each morning from The Border Mail. Sign up here.