Today, Carl Horrobin shares his story with us:

I first became concerned about a mole on my left elbow in August 2014. I had always had a large freckle there for as long as I can remember, but it had recently raised up into a mole and looked very suspicious. I went to my GP to have it checked out and after two visits was told there were no suspicious characteristics and it was most likely a wart.

Eighteen months later in February 2016 I was in a meeting at work. It was Friday which is a dress down day in the office and I was wearing a t-shirt, so the mole was on show and a guy next to me noticed it and spoke to me after the meeting. He asked if I’d had it checked out, which I said I had. When he told me he had had something very similar and he’d also initially been told it was nothing to worry about, only to be told two years later that it was melanoma, I immediately made another appointment with my GP. Seeing a different doctor this time they referred me to Clatterbridge Cancer hospital to the dermatology department. My work colleague literally saved my life.

The mole that first alerted Carl to a problem

The Consultant Dermatologist initially told me it was nothing to worry about and I left the hospital having been told I didn’t have cancer. My second lucky episode was when during the same appointment they took the mole off, as I kept catching it and damaging it, and they sent it off for biopsy. A week later I received a phone call from them saying they needed to see me. When I went in to see them they told me the news, it was in fact melanoma.

And so the rollercoaster began. Surgery a few weeks later taking 4cm of skin from around the area, and because it was on my elbow it needed a significant amount of reconstructing to ensure I could still use my arm properly afterwards. A sentinel lymph node biopsy performed at the same time tested positive for melanoma, and so a full lymph node clearance from my left armpit followed. The clearance showed no more traces of melanoma so again I felt like I had been very lucky and everything had been found and taken out.

Unfortunately that proved not to be the case. In September 2016 I was massaging my shoulder, something I had needed to do regularly since the lymph node clearance, and I found a lump in my shoulder which concerned me. An ultrasound scan showed it to be suspicious and so it was surgically removed, and it did prove to be another melanoma. Because I had convinced myself everything had been found this discovery hit me quiet hard and for the first time I began to believe my journey with melanoma was not over. I still wasn’t offered any further treatment, however, I was convinced I would have more recurrence in the future.

2017 proved to be a quiet year with no further treatment or surgery, although a CT scan in January showed something potentially suspicious in my lung, they were too small to really know what they were so they were just to be monitored in future scans. They appeared on the next scan in June but with very little change, so monitoring was the only suggestion again. On the next scan in December they had grown, albeit still being very small, so the assumption had to be that they were in fact melanoma and I would need to start treatment.

In February 2018, 2 years after my initial stage 2 diagnosis and having progressed to stage 4, I began immunotherapy treatment. After 2 treatments on IPI/NIVO the side effects hit me like a sledgehammer! A very rare side effect called Orbital Myositis, which is inflammation of the muscles around the eyes. It is usually treated with high dose steroids but more complications with me were caused by the fact I didn’t respond as effectively as I should to steroids. They calmed the symptoms but did not rectify the problem. Discussions between my Doctors in Clatterbridge and experts in the field focused on an anti inflammatory drug usually used in treatment of arthritis as a possible solution, and 7 weeks of taking this drug it is having an effect, although the symptoms persist and I am still on steroids and I still await the return to immunotherapy treatment.

The good news is, however, that the 2 treatments I did receive, along with causing some severe side effects, did the trick and the melanoma in my lungs have completely disappeared and I am now NED! (no evidence of disease).

The journey has been long with many ups and downs and twists and turns, but I carry on with optimism and resolve, what else can I do?