We often feature patient stories via our website and social media, and have been asked if many people survive melanoma.  Well, we do know that it is a difficult disease, to say the least, but we do have some positive stories to share.  Mel Jones shares his story for us:  

I was first diagnosed in 1995 with a 3.8 mm superficial spreading melanoma that was probably ulcerated. Less than 12 months later it had spread to the lymph nodes in my groin. After a groin dissection I participated in a clinical trial of a melanoma vaccine. Overall the trial was a failure, but I felt I was helped as I was clear of disease for 18 years. In the autumn of 2014 I walked into the handlebar of a static bike in the gym. I had a huge bruise on the site of my original WLE. After about 6 weeks I noticed a small hard lump under bluish skin close to the WLE scar. My dermatologist recognised it immediately as a local recurrence. She also found 2 new primaries, both around 1.1 mm. At that time I was referred to the Marsden Hospital in Chelsea. During 2015 I had 3 rounds of surgery at a total of 7 sites – WLEs, local recurrences and an intransit metastasis.

I applied for an adjuvant trial of pembrolizumab but was refused because of the vaccine trial in the 1990s. Scans at the end of 2015 showed disease progression to various lymph nodes in my chest – mediastinal, hilar and supraclavicular. I was now stage 4.
I was offered monotherapy Pembrolizumab or the Ipilimumab/Nivolumab combo on a cofunding basis ( the combo had not then been approved by NICE) . My initial view was to go for the combo, but Lavinia Spain, one of my oncologists persuaded me that, because I had a low tumour burden, normal LDH and indolent disease, I should firstly try Pembrolizumab and if that didn’t work, then try Ipilimumab.

I was one of the lucky ones. Roughly 40% of patients get a good response with Pembrolizumab and only about 15% get a complete response. I had a complete response. This was all the more surprising as I only managed 9 months of treatment versus the recommended 2 years because of side effects.

I’ve also been very fortunate in being able to lead a more or less normal life and in having 3 excellent oncologists – initially Julia Newton Bishop and, more recently, Lavinia Spain and James Larkin. I try to do what I can to boost my immune system through regular exercise, by taking probiotics and making my own kefir. I also try and enjoy every single day.

Mel, hat in hand and UV sleeves on!