Craig’s Story

During 2021, Craig was diagnosed with stage 2 melanoma which unfortunately later progressed to stage 4 during 2022. He started immunotherapy (ipilimumab and nivolumab) during June 2022 and unfortunately, he experienced side effects leading to sepsis and hepatitis. Once this was managed, he found out in September 2022 that he was No Evidence of Disease (NED). He now receives scans every 3 months and wants to share his story to provide hope to others.

“I’d like others to know that even when you are at your darkest day, there is hope and amazing things can happen, especially with the incredible new treatments available.”

I have always had a lot of moles on my body, however I was always aware of a larger mole on my upper right arm. So, in the summer of 2021 it looked like it had got a bit bigger and as a typical man said “ach it will be fine”, however my wife Jude and a good friend Louise both said, “you need to get that checked”. I eventually went to get it checked in early Oct 2021 at my GP and he straightaway said “that’s skin cancer”. I was due to go away on holiday in the following week (just in the UK) and he said he would give me a call to check on me that following week in case I had any questions etc. This was all quite unsettling, however we didn’t really know how serious it was at that point. He immediately referred me to Dermatology and within 3 weeks I had a consult with the Dermatologist. He confirmed I would need a biopsy, and a day surgery appointment was made.

I had the mole removed in mid-November and it was sent off for biopsy. This was confirmed within 2 weeks as melanoma. The tumour was 7.4mm deep and as such meant that I was already Stage 2. We were in shock. As you can imagine, many scans were booked and attended CT/MRI/Fibro scan. The scan results came back in January 2022 showing that the cancer had spread to my lymph nodes under my right arm (close to primary) and I would need more surgery. This meant that I had Stage 3 melanoma. The decision was made to remove all of my lymph nodes under my right arm. This happened on February 22nd. It all went as planned and I was in and out of the hospital in a day. I wasn’t quite prepared for how much fluid would collect under and in my arm after that point. The following day they removed over 1.5 litres of fluid by syringe!

“My wife pretty much became my nurse for this period of time and was amazing.”

I was in and out of dermatology every 2 to 3 days to have fluid drained and dressings changed. At its worst, we were changing dressings up to 6 times a day due to saturation, this went on for 12 weeks. My wife pretty much became my nurse for this period of time and was amazing. During this time, we were having regular scans and bloods etc to keep an eye on me, including checks with my Dermatology CNS.

“I was issued with a DS1500 that said I may have 6 months to live.”

All was looking positive until that faithful day – Friday 13th May 2022. We were invited in to see the Oncologist.. She confirmed, after looking at all the recent scans, that the cancer had progressed and I now had a 3mm lesion on my brain. Our world stopped at this point. I was now Stage 4 and Terminal. I was issued with a DS1500 that said I may have 6 months to live. The words at the bottom of the form regarding treatment said “Immunotherapy with Palliative intent”. The other gut punch was that I had to surrender my driving licence due to the “tumour” on the brain. As a petrol head and someone who loves driving this was horrendous, plus my independence was also taken away, despite the fact I felt fine to drive. A plan was made for me to start immunotherapy as soon as possible; however this seemed to take forever (bearing in mind I had just been told I may only have 6 months to live…). “is this my last Christmas?”.

“I was not very well, all appearing to be side effects to the treatment.”

I started my first infusion of ipilimumab (Ipi) and nivolumab (Nivo) on Mon 20th June 2022. This took around 5 hours in total to administer. It all went very smoothly and there seemed to be no problems. Fast forward to the early morning of the 7th July, up for the toilet and feeling slightly warm, turn on the bathroom light and I was red from head to foot. Downstairs and checked my temperature and it was higher than it should have been. Called my cancer hotline and I was told to attend my local Hospital and go to the Acute Assessment Unit. They got me started on IV antibiotics and fluids, by this time my temperature was near 40c. I had dermatitis and within the next few hours developed sepsis too. I was not very well, all appearing to be side effects to the treatment. I got moved to a ward the next day and I spent a total of 5 nights in the hospital on various IV drips of fluids, steroids and antibiotics. I was sent home with a mountain of tablets to take for the foreseeable future.

“This confirmed that my tumour on the brain has disappeared !! Utterly incredible news, we were astounded.”

Four Weeks passed and I felt unwell again. I ended up back in hospital with hepatitis, again a side effect of the immunotherapy. More steroids (this time administered as a day patient) and also prescribed mycophenolate (MMF). The following months were just managing the side effects of steroids and MMF, plus lots of scans, one being a Head MRI. I got results of that on 22nd September and this confirmed that my tumour on the brain has disappeared !! Utterly incredible news, we were astounded…! I continued steroids and Mycophenolate until October 2022 when I eventually finished them.

It was agreed that I could restart immunotherapy, however only Nivo as Ipi was considered too toxic for my body. I restarted Nivo on 31st October 2022. I got this infusion every 4 weeks, until my last one on 10th June 2024. During that time, I was also having Chest to Pelvis CT scans and Head MRI scans, all still showing No Evidence of Disease (NED). Just unbelievable! Since then, I have been leading as normal a life as possible. Getting scans every 6 months now rather than every 3 and still having clear scans. I should say that I got ill health retirement at the beginning of Sept 2022, and I believe that with not having to work, my body had the ability and time to fight the cancer and recover from the treatments. I think if I had the stress of work as well as having to go through treatment at the same time, I may not be here.

What advice would you give to other melanoma patients?

The main advice is don’t give up hope. Try not to worry, stress and go down a dark hole as you are using up a lot of energy which won’t change what is happening. Try to be positive, enjoy each day to the best of your abilities and above all keep talking to people. Join a support group so you can get your feelings off your chest, it might just help you AND someone else. Also, stay off Doctor Google!