5 Years on with Stage 4 Melanoma – How Life has Changed

May is Melanoma Awareness Month

Five years ago at the end of March, I received the devastating news that my melanoma had spread to my brain and I would need immunotherapy treatment. I remember the day very clearly and my head going into a complete tailspin as I realised the enormity of what I was being told and questioned whether I was going to survive the next 3 months.  I didn’t really process anything I was being told about the treatment and I left the consultation in shock. Fortunately my husband David was with me and had managed to take in more of the detail. The immunotherapy treatment (ipilimumab and nivolumab) that has contributed to me still being here has been a game changer for extending the lives of advanced melanoma patients, began a few days later, for anyone who wants to read more about my full melanoma story is available here https://shomelanoma.com/about/

Cancer anniversaries are a reminder of how long I have been living with incurable cancer not something that is necessarily to be celebrated. However I have been incredibly fortunate to have benefitted from the huge advancements in treatments for advanced melanoma and without these and the incredible care I receive from my second home The Royal Marsden I would without doubt not still be here writing this today.  Too many patients however don’t respond to these treatments highlighting the huge need to continue funding melanoma research to continue developing new treatments and stop patients continuing to lose their lives to this awful disease.

I was back at the Marsden in late March for my latest scans and all went smoothly at the hospital. The day after the scans I started to feel ill with a bad headache, blocked up nose and I was really tired. The next day I felt worse so I did a COVID test and it was positive.  I registered it with the NHS app and contacted the medical team at Marsden HQ to find out if I should continue taking my drugs. I was told by my Oncologist to continue on the medication as long as my symptoms remained mild. I didn’t feel great the next day but it was just like having a bad cold. On Friday, 2 days after I had tested positive the GP called to check in how I was doing and also to let me know they were referring me to the St George’s COVID team to check if I needed to have the antiviral drugs which were being given to the vulnerable. On Saturday, I had a call from St Georges and they went through a series of questions with me. By this point I was feeling slightly better but the doctor said he wanted me to speak to the respiratory consultant. On Sunday, the respiratory consultant called me and we went through more questions and in conclusion he decided that based on my feedback I didn’t need the antiviral drugs. I was impressed that the COVID response had kicked in and it did take me back to the start of the pandemic when my Oncologist advised that it was highly likely that I would get the virus at some point but it would be better to get it later rather than sooner as they would likely develop drugs to treat it which obviously they now have with the vaccines.  I was due into the Marsden on Monday for my scan results and to see my Oncologist but on Sunday eve I was still testing positive so I contacted my medical team and said I think its best I have a phone consultation.  At 8am on Monday morning my phone rang and it was Prof Larkin to tell me that my scans were good, 3 more months of drugs were being prescribed and it was happy days. I was so delighted 5 years on from being told that the melanoma had spread to the brain and as always it’s a huge thank you to the amazing melanoma team at the Royal Marsden especially Prof Larkin and my CNS Nikki Hunter who have been there with me all the way.

In the last couple of months, there has been much sad news on the melanoma support group that I am a member of and we have lost many special people.  One lady in particular I used to message some times as we had a similar love of the Scottish islands and I met her at a patient lunch a few years ago Susannah Archer who died of stage 4 melanoma a couple of months ago. It all happened very suddenly as she had run out of treatment options and was on a trial. She was always answering questions of other patients even although she was going through a lot herself and I learned a lot from her about educating myself about melanoma, not being afraid to question my medical team and advocating for myself. She was also a very talented wildlife photographer and her photographs were very calming.  David and I will be going to the Outer Hebrides shortly and she loved the Isle of Harris so will have a toast to her when we are there and think of her husband and son.    

This reinforces how quickly things can change and makes me determined to keep focused on the Team Shomelanoma fundraising for melanoma research at The Royal Marsden.  I am delighted to announce that the next big fundraising challenge for Team Shomelanoma is the Toubkal trek in Morroco, North Africa’s highest mountain which we will be taking on in September 2022. This will be a tough challenge as we will be climbing in the heat of the Atlas mountains and Mount Toubkal is not to be underestimated at 4,167m. Team Shomelanoma has 16 hikers signed up and training is kicking off shortly. A huge thank you to everyone who has signed up and we are looking forward to another challenging adventure raising funds for the fantastic melanoma research team at the Royal Marsden. More to come on this challenge and how you can support the team in the next blog.

As COVID restrictions have lifted Dave and I were lucky to get away for a mini break to Madrid over Easter. It really is a beautiful city and we had a fabulous long weekend exploring all that the city had to offer. It was the first weekend of warm weather of the year and we could easily identify the Brits in the city. With temperatures in the low 20’s the Spanish were still wandering around in their winter wear whereas you could spot the Brits a mile off in their shorts and vest tops displaying as much skin as possible to get a tan. As we enter May – Melanoma Awareness Month and go on the raising awareness of skin cancer, this is just a reminder to do a skin check once a month and report any changes to your GP or dermatologist.  Melanoma UK has an excellent checklist and I recommend reading through this, I would hate for anyone else to go through the experience of this awful disease just because they wanted to have a tan.

https://www.melanomauk.org.uk/pages/category/skin-check

We are coming up to conference season and with COVID restrictions lifting we will once again be having in person conferences this year. I am looking forward to the Melanoma Patient Conference in June and my Oncologist Prof Larkin is giving a lecture on immunotherapy at the Royal Society of Medicine that I am planning to attend. There are many new and exciting advances taking place in treatment of melanoma and this week my Oncologist did an update for Melanoma UK, which provided an excellent update for patients on the latest treatment developments. Here is the short video for those of you that may be interested https://www.melanomauk.org.uk/news/melanoma-update-april-2022

Thank you as always for all of your support, with the 5 year milestone passed it is onto the next one, while living life still very much in the present and treasuring every day ( and being very glad to still be here) I am closing this blog remembering the lovely Susannah Archer.