Liz’s Story
“In November 2013, I had what I thought was a perianal skin tag removed, as it had become quite sore. A month later, when the biopsy results were returned, I was diagnosed with melanoma. I was 47, a devoted wife and mum, and had just started my own beauty therapy business. This news was completely devastating.
However, I was determined to fight it! I had what’s called a wide local excision of the site, my surgeon cleverly avoiding any further compromise to the area where the tumour was found, but unfortunately some tests revealed that the melanoma had reached the sentinel node in my groin. It was recommended that I underwent surgery a month later to remove all lymph-nodes in my left groin, which thankfully were disease-free. Removing these nodes inevitably led to lymphoedema in my left leg, meaning that I had to wear a compression stocking and adjust my lifestyle to control the swelling, but it was a small price to pay to know that I was tumour-free.
A year later during a stressful time and the loss of my father, two bluish pea size lumps appeared on the scar on my groin from the previous surgery. The melanoma had returned. The tumours were removed quickly, but six months later another appeared, and this pattern repeated itself for several anxious months until finally one popped up that we were unable to remove safely. At this point my treatment plan had to change and I was started on the relatively new immunotherapy drug Pembrolizumab, which initially gave me few side effects, mostly only fatigue.
At the same time, I decided to make some changes of my own and had been reading up on the impact food and chemicals can have on a tumour’s ability to thrive, and our bodies’ ability to fight back. I reviewed my entire diet, cutting out everything processed and more specifically refined sugar, plus I swapped in more natural or organic alternatives for many of our household products. I tried to avoid stress and even took up yoga! I will never know how much this actually helped, but because it gave me a role in the fight it had a big impact on my mindset.
After three months the melanoma was now in both groins, moving towards my pelvis and something unexplained was spotted on my lung. I underwent radiotherapy combined with immunotherapy, but I unfortunately developed colitis and pneumonitis, side effects that meant the treatment had to be stopped. I was put on steroids to counteract the colitis and pneumonitis, which thankfully it did, but unfortunately it also accelerated the growth of my tumours - and the risk of restarting immunotherapy was still high. I was beginning to have thoughts at this point that we were running out of options to fight this hideous thing.
However, since we had met my oncologist, Dr Ajaz, he had always involved myself and my husband in discussions around my care plan, which gave us a feeling of co-managing – this was a huge comfort. We could see that his knowledge and involvement in new research was inspirational, and it gave us real hope. Dr. Ajaz told us of a new treatment called T-Vec, which is an injection into the tumours designed to kill it from the inside. It was a local disease control rather than systemic, but the research showed there was a reasonable chance it might also work on untreated tumours. I seized this opportunity and embarked on fortnightly injections. 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. Who knows what is ahead, but I’ve been really living every day since then. I will always be 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. However hard it is, and trust me I know it is hard, keep positive, have hope and I wish you every possible bit of luck with your treatments. To the families who have lost loved ones I send my heartfelt sympathy and urge readers to support more research into this cruel disease.”
Mike, her husband and children, Amy and Jack take up the story.
“Unfortunately, shortly after Liz’s note above, her melanoma returned, this time in her brain. The cutting-edge T-Vec treatment that Dr. Ajaz recommended had successfully removed the melanoma from below her neck, but unfortunately due to the multiple additional layers of protection our bodies put in place for our brains, her treatment had not been able to penetrate sufficiently effectively into her brain and an initially tiny deposit showed up on a followup scan.
Liz underwent three brain surgeries to remove tumours between December 2017 and September 2019, which both gave her hope and alleviated her symptoms for a while. However, a large tumour developed on her knee in February 2020 which could only partially be treated due to its size and the cancer continued to progress including inside her brain. In August 2020 multiple tumours became apparent in her brain and these began to bleed, causing stroke-like episodes. Finally, she suffered a major brain haemorrhage at the end of August 2020 and Liz died peacefully several days later in the fantastic Hospice in the Weald on September 8th 2020.
Despite being told early on that she would be lucky to live another five years, Liz lived nearly seven years from her first diagnosis. This is not only a testament to her unfailing positivity and fighting spirit, but also to the fact that through her knowledgeable and innovative oncologist she was able to access new, cutting-edge treatments that would not have been around had she had been diagnosed even just one year earlier. She was lucky enough to be among the first to try some of these treatments, notably T-Vec, but also including several different immunotherapy drugs which are increasingly effective in extending life and even curing cancers which would have been considered incurable only a few years ago.
As Liz found, melanoma has a pre-disposition to go to the brain, frequently with terminal results. The “blood-brain” barrier prevents many of these treatments from being as effective above the neck as below it. This is a critical area where research needs to be done to improve melanoma patients’ outcomes and hopefully save lives for those in Liz’s position in the future. The Liz Binns Melanoma Charitable Trust has been set up to help fund research into the treatment of Melanoma with such improved outcomes in mind. Liz would be thrilled to know that funds being raised in her name will be used to continue the research that gave her more years than she hoped for and the opportunity to see her children become adults. Hopefully these funds can give many more a cure in the future.
Mike, Amy and Jack Binns