A Life-Changing Cancer Treatment
As a young man, I overcame non-Hodgkin lymphoma. Twenty-six years later, I faced a terrifying new challenge
It’s late June 2019, and I have no indication of what’s ahead. Family life and work as a senior writer for a newspaper in Sydney are going well, and I’m enjoying training for an overseas triathlon. Since taking up the sport six years ago, I’ve come to love getting outdoors to swim, run or cycle nearly every morning.
I book in to see my doctor about a lump under my left arm. He thinks it’s a harmless cyst. I get back to work and training. In early July a second lump emerges on the left side of my chest. The GP thinks it’s another cyst but, because it’s more noticeable and I’ll be away soon, I ask to have it removed. He sends me to a surgeon who wants a biopsy before operating.
So on a wintry afternoon in late July, I have a series of scans and a needle biopsy at a clinic. It goes on much longer than expected. After the doctor glumly studies the X-rays and does another biopsy, I ask if he thinks it’s cancer. He nods.
Whatever either of us says next is a blur.
Arriving home, I tell my wife, Heather, as calmly as I can what the doctor said. Just as stunned as me, she’s immediately practical: suggesting we wait till we know more, and take things day by day.
I break the news to my son, Kip, 27, who is in his bedroom. He takes it in slowly and calmly. We all know there is no point wasting tears now.
We have a quiet dinner, silently resolved that, as a family, we will do everything possible to beat this thing.
Two days later, the surgeon confirms it’s cancer. “If you’re lucky, it’s lymphoma,” he says. “If you’re unlucky, it’s melanoma.”
I still hope to race in five weeks and get treatment when I return home. But after more scans and biopsies, an oncologist calls. It’s late on a Friday in August, and I’m walking home after having my biopsy stitches removed.
The doctor admits to being shocked: it’s melanoma, metastasised. I ask whether she’s shocked because of how much cancer there is or how far it has advanced. “Frankly, both,” she says. There are tumours all around my chest, stomach and legs.
It’s a sombre walk home.
I talk through the diagnosis with Heather and Kip, trying to stay positive but unable to forget those words, “Frankly, both.” We go to a favourite Thai restaurant, and talk about anything but the diagnosis in a bid to stay cheerful. The surreal thing is how fit I feel. Without those lumps, I’d have
had no idea that I was dangerously ill.
I work the following Sunday, write a couple of stories, then tell the executive editor about the diagnosis. It’s a tough, awkward conversation for both of us, but I’m relieved and grateful when he offers whatever support I need to get through it.
I have no idea when or where treatment will start. Over the next few days, I steel myself for what I expect will be chemotherapy. I try not to get too distressed. Whatever happens next, it will take time, and that’s time I should try to enjoy.
TWENTY-SIX YEARS EARLIER, a similar experience made me grow up fast. After being diagnosed with non-Hodgkin lymphoma, I went through six months of sometimes brutal chemotherapy. The treatment worked, and I came out of the experience a better, more grateful person. Heather and I had just bought a house, and with Kip a toddler I was determined to stay alive to be a good father.
Stepping back from work, I learnt to live in the moment, appreciate what I had and make the most of life. Getting well again, I was determined to live with intensity, give back, have fun.
Now it’s a different challenge. Melanoma. “Australia’s cancer”, as my oncologist calls it. With high UV levels and outdoor lifestyles, Australia and New Zealand have the world’s highest incidence of melanoma. Despite decades of sun-awareness campaigns, one Australian is diagnosed with
melanoma every 30 minutes. It killed more than 1400 in 2018, according to the Melanoma Institute Australia.
The cascade of bad news continues. Five pathologists are unable to specify what type of melanoma I have, other than by a terrifying and indecipherable phrase: “undifferentiated malignant neoplasm with prominent lymphohistiocytic reaction”.
From a form given to me to sign in a waiting room, I discover I have ‘stage four’ melanoma, meaning it has metastasised extensively around the body. Googling on my phone, I’m horrified to learn there is no stage five.
Six weeks after the first lump but before any treatment begins, another lump emerges on my stomach, and my thighs begin to ache ominously.
Strange as it might sound, I realise how lucky I am. Only one tumour – in my lung – is affecting a vital organ, and, crucially, the doctors don’t think the cancer has reached my brain. And there’s a really touching amount of support from family and the friends and work colleagues who know about the diagnosis.
I tell as few people as possible. If a friend is upset when I tell them, it upsets me. If someone says how confident they are I’ll get through it, that also upsets me. Don’t they know how serious this is? In calmer moments, I realise people are just doing their best to respond without knowing what to say.
The nights are the worst. There’s a lot to think about in the darkness: This will end badly. There will be pain. Why didn’t I do more with my life? Eventually, sometime past five every morning, our kelpie, Kody, barks to be let in. As he jumps around and follows me back up the stairs, sniffing and snorting, the dark thoughts disappear.
ONCOLOGIST DR ALEX MENZIES works out of a modern clinic in North Sydney, headquarters for Melanoma Institute Australia, the world’s largest not-for-profit organisation devoted to the disease’s clinical care, research and teaching.
Energetic, laser-focused and practical, Dr Menzies says that after further testing there’s still uncertainty about exactly what type of cancer I have. He thinks it’s most likely melanoma, and says the best treatment is not chemotherapy but immunotherapy.
Two powerful drugs, Opdivo (or nivolumab) and Yervoy (ipilimumab), will aim to activate my own immune system to kill the cancer cells.
SOME VERY ILL-LOOKING PATIENTS ARE HERE. I WONDER IF THIS IS HOW I’LL LOOK SOON
To start, there will be four treatments, three weeks apart. Only 50 per cent of patients get through all four because of side effects, but even one treatment can have a positive effect.
The staggering $250,000 cost over two years is covered under the Australian government’s Pharmaceutical Benefits Scheme. The drugs are available at a centre across the road so I can start immediately if I want. I can hardly say “absolutely” quick enough.
Half an hour later, I’m sitting in a leather armchair with a drip in my arm for the first treatment: 30 minutes of Opdivo, 30 minutes of a saline solution, 30 minutes of Yervoy. Some very ill-looking patients – pale and thin – are being treated in armchairs in various rooms. I wonder if this is how I’ll look soon.
Two weeks into treatment it’s clear immunotherapy is nothing like chemotherapy. Instead of being knocked flat, then gradually recovering before the next treatment, each day is different. Some days I feel good; others, tired and sick. Sleep is fitful.
I’ve worked out my own approach to getting well: enjoy every day, stay in the moment, relish time with family and friends, eat well, stay engaged with the world, exercise, have fun and keep mentally stimulated.
I love reading books and watching films when I feel well enough. Swimming is helping, too, even just sliding into the cooling water at a nearby
aquatic centre. Calmness comes as the laps pass.
By late September, a month into my treatment, my side effects have been limited to skin rashes and thrumming aches in my hands, legs and feet, mostly at night. I start the day by walking the dog. Even if I don’t feel like it, I head to the pool.
An easy 20 laps becomes 30 some days. I decide on a project: using treatment time to improve my swimming. I try to convince myself – almost trick myself – that there will be a future. I can sometimes stretch to 40, even 50, steady laps.
As the weeks pass, I come to terms with two aspects of having cancer that settle the overnight anxiety. Instead of baulking at being a patient, I accept that I’m part of this twilight world of medical struggle. I start wearing the rubber wristband I’ve been given that tells doctors and paramedics the drugs I’m taking. Instead of feeling different from other patients, I feel a kinship. I try to smile instead of avoiding eye contact.
And I decide that it’s OK if there isn’t a future. I’ve been a good father and I’ve made the most of the time I’ve had since getting through lymphoma.
What really matters is that I’m here now.
In October, after the third treatment, my sleep gets worse as my legs, feet and hands ache again at night. By the afternoon, I need a nap.
Swimming gets me through it. One morning I swim four kilometres. The next week, five. Three weeks later, six. Focusing on a smooth style and a low heart rate, I’m enjoying swimming so much that the laps pass easily.
Soon it’s November – time for scans to see how the four treatments have worked.
HE ATHER A ND I have barely sat down when Dr Menzies breezes into the clinic. The scans, he says, show the treatment is working “spectacularly”. I’m confused. “In a good way?” I ask.
He smiles. Of the possible results from immunotherapy, “This is as good as it gets.”
With further treatment – Opdivo every four weeks – he expects the tumours to continue to shrink, even disappear altogether. He thinks I’m heading towards being effectively cured.
I’m stunned. Heather and I have a coffee in the hospital garden, trying to work out whether to believe what has just happened. I’m relieved but bewildered.
A DECADE AGO STAGE FOUR MELANOMA WAS EFFECTIVELY A DEATH SENTENCE
Over the coming weeks, progress continues, and scans show the treatment will need to continue once a month well into 2020. But now when Kody barks to be let in at 5am, it’s no longer a relief that the night is over. It’s the start of a new day.
It’s not until I interview Dr Menzies for this story that I learn exactly how lucky I’ve been. A decade ago, he says, stage four melanoma was effectively a death sentence. With chemotherapy of little value, I would have been given six to nine months to live, less if it reached my brain.
Dr Menzies says 50 per cent of stage four melanoma patients now survive long enough to be effectively cured. “It’s been an absolute revolution,” he says.
The two drugs that are saving me, Opdivo and Yervoy, were administered as a combined treatment for the first time in 2016. Among a suite of immunotherapy treatments that are revolutionising the way many cancers are fought, they are proving useful for certain types of breast, lung, head and neck, bladder, bowel and stomach cancers, as well as melanoma.
According to Dr Menzies, the only cancers this type of immunotherapy is not beneficial for are pancreatic, prostate and brain cancers. “Immunotherapy is the biggest breakthrough in medicine in our generation,” he says. “Across the whole body of medicine, it’s been the biggest breakthrough potentially since penicillin.”
It’s 5.30am on a February morning, almost exactly six months since I started treatment, and I feel strong as I arrive at the pool. I start swimming in darkness and keep swimming as a sparkling morning emerges, reaching ten kilometres for the first time. The sky, I can’t help but notice, seems especially blue.
Update: Garry Maddox says that his doctors have given him the all-clear and he has stopped his treatment. In October 2020, he competed in a ‘comeback triathlon’.