As a child ( I was born in 1953), my father would always tell me to be careful of the sun and to wear a hat. He loved lying out in the sun and consequently had many small skin cancers removed from his scalp. Being young and carefree I didn’t always do as I was told. Sunscreen was not really the done thing back then – in fact, it was more in vogue to lather up with baby oil. Little was known about the dangers of the sun and the sun creams had very low SPF.
Late in 2015 I had a small growth on my neck. I had an ultrasound. It didn’t really show anything nasty and it was believed to be a cyst. I made an appointment with a dermatologist to have it removed but it was not considered to be urgent. The appointment was for late January 2016.
Towards the end of 2015, I developed a backache which increased in intensity in a short period of time. By early January 2016, I was walking with a limp and my left foot dragged on the ground as I walked. Thank goodness my GP noticed that this appeared to be more than ‘just a backache’. He immediately arranged for me to have an MRI, CT scan and PET scan. The results came back that I had a secondary (cancerous) tumour on my lumbar.
He advised that I keep my appointment with the dermatologist but not have the growth on my neck removed as originally planned. The instructions to the dermatologist were to find the primary source of the cancer.
The dermatologist found nothing despite being told there was a primary cancer growth somewhere on my skin.
2016 was the year of my cancer journey. I was unable to work (I’m a teacher) and spent the year in and out of hospital, treatment centres and doctors surgeries.
My GP sent me to the ALFRED Melanoma and Cancer Centre, where I was seen by 5 doctors. The primary was found – in the centre of my (almost) bald head. I was eventually diagnosed with stage 4 melanoma. (To say that I was unimpressed with the original dermatologist would be an understatement).
By this stage the growth on my neck was now the size of an egg.
Following various biopsies, it was found that the cancer had begun on my scalp and spread to my neck and L5 area on the lumbar. The tumour on the lumbar was extremely painful. The cancer was eating into the spine and pinching a nerve. It was initially thought I would require an operation to remove as much of the tumour as they could, but thankfully the surgeon said he would wait about 6 months to see how things progressed. In retrospect this was absolutely the right decision for which I am very grateful. However, at the time the pain was excruciating and I was on an ever increasing regime of extremely strong pain killers 24/7.
My initial treatment was a series of short bursts of radiation on the lumbar.
Subsequently, it was decided to put me on a program of immunotherapy – the new and ground breaking drug was called Pebrolizumab (Keytruda). Chemotherapy was, thankfully ruled out of the equation. I was initially told that this drug had a small chance of success – I think the odds quoted at the time was a 30 percent success rate.
Keytruda was in its infancy. It had only just come off trials and very recently been approved to be on the PBS. The doctors didn’t know how long a patient needed to be on it, they were not sure of the strength required, and said that I would have to receive a regular infusion for the rest of my life. It seemed to me like trial and error and I felt like a bit of a guinea pig, but I put my trust in the system.
Every three weeks I fronted up to have this treatment. I also underwent numerous MRIs, PET scans and CT scans. They seemed continual.
Of course I also saw my oncologist after each scan to discuss how I was going. After about 5-6 months the oncologist was both surprised and very pleased that the tumour on the lumbar was shrinking. Even more amazing was that the bone had commenced growing back.
I was able to begin slowly reducing the strength of the pain killers. What a relief – no operation on the spine was required! The tumour on my neck had also shrunk and almost disappeared. The primary on my head was removed surgically and a very talented plastic surgeon ensured that hardly a scar remained.
I actually felt really good for the length of time I was on the immunotherapy.
It was only after I finished that I broke out in rashes and my skin became very itchy and irritated. This was dealt with using a variety of cortisone based creams.
After about a year and half of treatment, the cancer was no longer evident and I stopped the immunotherapy. However, I then lost my sense smell and taste.
I also began slurring my words, looked very pale, lost energy, and began walking with a stoop. I began looking and behaving like a very elderly man – almost overnight.
I was sent to a specialist who had no clue what was going on. My oncologist also did not have any answers apart from saying that I was still cancer free.
My GP did a lot of investigative ‘digging’ and found out, through studies in America and Europe, that there was a strong connection between Keytruda and thyroid. He ordered blood tests which showed that my thyroid was completely destroyed (due to it being overworked).
So now I take thyroid tablets daily. A small price to pay for my life.
I have no doubt that the length and dose of the course of immunotherapy has since been adjusted. As stated, it was in its infancy when I commenced treatment.
By 2017 I was able to return to part time teaching and have continued to this day. I recently celebrated my 70th birthday. I am in my seventh year of being cancer free and am very grateful for the research and development that has literally given me a second chance at life.
In particular I thank and acknowledge my GP who recognised immediately that this was more than a mere backache and acted very quickly to ensure that I was tested appropriately. He continually steered me in the right direction. I also need to thank my oncologist and all the caring staff at the Alfred and of course my wife and loving family for looking after and caring for me.
