Caroline’s Story

Caroline was diagnosed with stage 3 melanoma in 2009 after she noticed a dark freckle on the top of her foot changing. During this time there were very limited treatments available, the lymph nodes in her groin were removed and she received follow up appointments for 5 years. Unfortunately, at her final follow up appointment it was found that she had a new melanoma on her leg. By this point treatments were advancing, and she was given pembrolizumab. However, due to significant side effects, she could not complete the full course. More and more melanoma deposits appeared on her leg. So Caroline was then given T-VEC, however it did not work, so she had to stop.  She has since been on dabrafenib and trametinib and for the past four years, (other than one small melanoma that was swiftly taken off), she has been NED for the last few years. Here she very kindly shares here story:

“I was a mum, working full time, with an elderly mother to care for and life was extremely full on.”

Back in 2009 when my son was only 4 years old I was first diagnosed with melanoma. I was a mum, working full time, with an elderly mother to care for and life was extremely full on. I had always had an extra dark freckle on the top of my left foot ever since I can remember. But in the spring of 2009, it had started to change. I did not worry at first as I was having a complete nightmare at work, I was being made redundant, and my focus was elsewhere.

“The beauty therapist said she thought the freckle had changed.”

The week I left my job I treated myself to a pedicure, the beauty therapist said she thought the freckle had changed. A week later I went to see my sister who also said it had changed and told me to go to the doctors straight away, which I did (well she is my elder sister after all!).

“They think I have cancer.” Words you never want to say.”

I went to see the GP, thinking he would tell me there was nothing to worry about. How wrong could I be? After an emergency two-week referral appointment with a dermatologist. I had his words ringing in my ears, “If I was a betting man, I would say that is a melanoma”. I went home to my husband and told him, “they think I have cancer.” Words you never want to say.

“I was told it had spread to 4 lymph nodes in my groin.”

I was referred to a dermatologist where they confirmed that it was melanoma. After my wide local excision (WLE), (which put me on crutches for six weeks), and a sentinel lymph node biopsy (SLNB) I was told it had spread to 4 lymph nodes in my groin. I had stage 3 melanoma and back in 2009 this was devastating news, with little treatment available. All they could do was cut the lymph nodes out and hope.

After my next operation to remove the lymph nodes, I was discharged. But only days later,I got a serious infection in the groin. A fast-moving cellulitis which could turn to sepsis at any time. I was admitted to hospital for 8 days for intravenous antibiotics.

I remember being very frightened, but I had to put on a ‘happy mum face’ for my son who seemed to be more fascinated with the TVs by the bed, than worrying about me. He was also extremely proud of the LEGO hospital he had made with his aunty, which I think helped us all cope.

Years went by and nothing, (well except for a pituitary gland tumour removal, but that is a story for another day). Then on my very last appointment, five years out, before being signed off, I asked… ‘can you take a look at this please’. Oh no, it was another one. This time halfway up my calf. Another WLE followed with more time on crutches. But over the next few months more and more appeared on my leg creeping slowly up towards my pelvis. Almost every appointment there was more. They cut them out, sometimes four or five at a time, only for them to reappear.

“By this time the NHS had pembrolizumab and I was finally offered this treatment.”

By this time the NHS had pembrolizumab and I was finally offered this treatment. I think I got to seven cycles before I had side effects. And when they came, they came with vengeance. I was admitted to hospital with colitis for 6 days and given high doses of steroids and then infliximab. It finally calmed down after three more infliximab infusions, but the strong memory of the indignity of me pooing my pants whist walking the dog will never go away.

So, what to do? As pembro was not working. So I was referred  to try T-VEC. A treatment that I did not enjoy. Getting 20 plus injections in your leg every three weeks is not fun. And the severe red rash I got from the plasters, gave the team a new side effect to worry about, contact dermatitis.

That too did not work, so I was moved on to the targeted therapy, Dab/Tram. With these tablets a minor miracle occurred. The 20 plus melanomas on my leg simply melted away. I was finally NED. Amazing.

Other than one small melanoma , delt with by a very swift WLE (my third), I have been NED for over four years now and still on the tablets with little side effects other than a bit tired.

“I have been able to watch my son grow up and see him off to university.”

I have been so lucky. I have been able to watch my son grow up and see him off to university. I started a new job, in which I have been part of a team that has now raised over £60 million for charity. I also was there for my mother in her final years as she fought dementia. And I have made more memories than I could ever have hope to have back in 2009. I am forever thankful that I survived long enough to benefit from all the new treatments that were not available back then.

What advice would you give to other melanoma patients?

When people ask me how to cope with cancer, I tell them to try to stay positive, worrying does not help anyone and just take one step at a time.  To quote that famous philosopher Dory, friend of Nemo – When you are facing something so big, so deep and so wide then remember… ‘just keep swimming, just keep swimming, just keep swimming…’

Why is Melanoma Focus important to you?

For the first time ever, at last year’s Melanoma Patient Conference, I talked to people that have gone through the same thing as me. It felt like I was not alone and how lucky I have been to still be here