In November 2013 what I thought was a perianal skin tag had become quite sore and so I had it removed. Unfortunately, a month later I was diagnosed with melanoma. I was 47, a devoted wife and mum, had my own little beauty therapy business and this was entirely devastating.
However I became determined to fight it! I had a wide local excision of the site, my surgeon cleverly avoiding any compromise to the area, but the sentinel node was positive and I was recommended a lymphadenectomy to the left groin. I underwent surgery a month later and all nodes were disease free. Post surgery I developed lymphoedema in my left leg which was fairly inevitable but with garments and regular MLD/exercise and self care I mostly keep on top of this.
A year later during a stressful time and the loss of my father, two bluish pea size lumps appeared on my groin scar. The melanoma had returned. This was removed very quickly and nothing else appeared until 6 months later when another lump appeared. This pattern repeated itself for several months with disease popping up in both groins until finally one proved un-excisable. My treatment therefore had to change at this point and I was started on the immunotherapy drug Pembrolizumab, which initially gave me few side effects, mostly only fatigue.
At the same time I decided to focus on some actions of my own and began trying to starve the disease from my body. I reviewed my entire diet, cutting out everything processed, specifically refined sugar, plus cleared my house as realistically as possible from chemicals, tried to avoid stress and took up yoga! I will never know if this helped but in my mind it did and that gave me a role in the fight.
After three months my tumours were still increasing in size and some radiotherapy was suggested in combination with the immunotherapy. I arrived the first morning of my treatment to be told it was not going ahead as another oncologist had been in contact recommending an alternative and preferable radiotherapy approach. This oncologist was Dr Ajaz. We met with him straight away and he took me on board as a patient. I was scanned and a more complex treatment planned.
The melanoma was now in both groins, moving towards my pelvis and something unexplained was spotted on my lung. I underwent radiotherapy following which I unfortunately developed colitis and pneumonitis, side effects that meant immunotherapy had to be stopped and I embarked on a month of steroids in an attempt resolve these problems. Really thankfully they worked but they had also suppressed my immune system which in turn accelerated the growth of my tumours and the risk of restarting Pembrolizimab was high.
Since we had met Dr Ajaz refreshingly he had always debated my care plan which gave us a feeling of co-managing – this was a huge comfort. We could see his knowledge and involvement in research was inspirational and it gave us real hope. I began to think at this point that we were running out of options for this hideous thing but he told us of a new treatment called TVec, a more local disease control rather than systemic but there was a reasonable chance it might also work on untreated tumours. I seized this opportunity and embarked on fortnightly injections directly into the accessible tumours. Despite the discomfort and flu like side effects, after only a few treatments the disease started to regress and after just five months in March 2017 I had the truly wonderful news of a disease-free PET scan!
My ordeal leaves me a little battered physically and mentally and who knows what is ahead but I’ve been really living every day since then. I will be ever grateful to have met Dr Ajaz who has given me this chance. To those of you reading I hope this story helps in some little way and however hard, and I know it is, keep positive, have hope and I wish you every possible bit of luck with your treatments. To the families of lost loved ones I send my heartfelt sympathy and urge readers to support more research into this cruel disease.
