Image: Camilla Keeling and her husband David with their dog. Credit: Camilla Keeling
I first went to the doctor in October 2016 about a mole on my arm and was told that it was nothing to worry about. But six months later I accidentally knocked it and the mole started bleeding, so I went back to the GP. Within 24 hours, I saw a consultant who said without any hesitation, “That’s melanoma.”
I had the mole removed. I recovered quickly and after a wider excision was told the melanoma had tested as stage 2B - there was no evidence of the cancer having spread. I also had a sentinel lymph node tested and that was clear too, so I felt reassured. I’ve never been on a sunbed, but I’m fair-skinned and a committed gardener.
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My scans revealed tumours
As a follow-up, I had six-monthly whole-body examinations by a dermatologist. In January 2018 during one of those check-ups, they found another mole which the dermatologist was concerned about. This was removed, and I was told it was stage 1A - again that there was no sign of any spread.
A year later, in March 2019, I had abdominal pain and was given an abdominal scan. By some weird and lucky chance, the radiographer captured the top of my lungs in the CT scanner image. My abdomen looked fine, but my lungs showed a tumour - more melanoma - so I had the top lobe of my left lung removed in August 2019.
At this point I was told that my cancer was now stage 4 and was deemed incurable, but could be treated with immunotherapy. I was also told I had a 30% chance of five-year survival. But two months later, before I could even start immunotherapy, another scan showed a brain tumour, so I had to have radiotherapy first to target the tumour in my brain, which was successful.
The pandemic hit
In December 2019, I started immunotherapy with the drugs nivolumab and ipilimumab. I tolerated two doses before I developed colitis, an autoimmune reaction in the digestive system. I was in hospital for a month and at one point, my husband was told that I probably wouldn't see the weekend. I was on so much morphine, I don't think the full impact really hit me at the time.
Luckily in January 2020, after weeks of unsuccessful intravenous steroids, I was given a drug that stopped the colitis. I came out of hospital on a high dose of steroids and slowly weaned off them over the next few months. By then, it was June 2020 and we were in the middle of the Covid-19 pandemic, so all my hospital appointments were via telephone and I didn't have any in-person consultations. That month I had a scan which showed my cancer was stable - the immunotherapy had been a success!
I had scans every three months which continued to show my cancer was stable until October 2021 when I started to feel unwell. This showed up as a melanoma bowel tumour and in January 2022 I had surgery to remove it. Initially it was thought that the bowel resection had been successful, but a scan in May 2022 showed there were still tumours in my abdominal area.
I'm very hopeful
In July 2022 I went back on nivolumab and I'm now on a monthly single dose. I've tolerated it very well and my last two scans have shown shrinkage of the bowel tumours.
I now swim twice a week and walk every day, and I’m able to do everything I want to. I’m a keen gardener and maintain a large vegetable patch and polytunnel, as well as a huge flower garden. I do have some fatigue and some muscle stiffness, but really, these things are minor.
Despite the brain tumour being successfully treated with radiotherapy, and good results from the nivolumab, I'm wary of thinking that I’ll have an enduring response, as it was only 18 months after seemingly successful treatment with immunotherapy that I developed the bowel tumour. But on the other hand, I'm very hopeful and positive.
It is complicated - living with a stage 4 diagnosis, there are periods of time where I pretty much ignore the whole thing, and other times where it swallows everything up.
We need to understand more
It’s been so amazing to see the progress that has been made in immunotherapy over the four years that I’ve been aware of it. It’s still an emerging treatment - we don’t know who's going to get the best response and who's going to get a short-term recovery. And sometimes it seems to be the absolute luck of the draw.
Finding out that only a small percentage of patients receive benefit from immunotherapy is horrible - it will be wonderful when scientists understand more about the immune system and we can hopefully utilise this great treatment for more cancers. Immunotherapy really does look like the way forward for surviving this beast of an illness.
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