Story
We are raising money to be sent directly to the Liverpool Occular Oncology Research Group at the University of Liverpool.
Just before Christmas 2019 Dad’s optician saw a spot on his retina and referred him for tests. Tests showed a melanoma at the back of his eye, and at the start of 2020, just before lockdown one, Dad had an enucleation at Moorfields. (his eye was removed)
He took it amazing well, I had to make the nurses promise not to let him leave the hospital the next morning until my mum got there as he wanted to get the bus home by himself. He went to Canada on holiday a few weeks later. And got his prosthesis fitting in March. His WhatsApp profile picture was a pirate flag 🏴☠️ for along time.
Post surgery the surgeons suspicions that some of the tumour cells had escaped into the blood vessels were confirmed but a course of radiotherapy was planned to hopefully sort those out and scans showed thankfully showed no distant spread at that time.
All was good for the next 14months Dad was living in sunny Gibraltar but visiting the uk and going away on holidays with us. He came back over for Christmas. Covid restrictions meant we couldn’t spend Christmas together as Essex was in lockdown but we did sneak a family dinner the week before.
A planned scan in April 21 showed spread to Dad's liver. He was quickly started on some new immunotherapy drugs to try to slow it down/stop it. Treatment was always meant to be palliative but prognosis was estimated at 15months.
Unfortunately immunotherapy didn’t work for Dad, he fell ill with a fever in June and his scans showed that the immunotherapy had failed to shrink the tumour and his prognosis was decreased to 6months.
3weeks later his cancer had progressed so far that end of life care was commenced and he passed away 20/07/21 aged 60.
Occular melanomas are very rare and behave and respond in completely different ways to skin cancers there is lots of research on melanomas but the majority focused on skin melanomas.
50% of the tumours metastasis and once metastasis is detected prognosis is poor and mean survival times are typically one to two years. (Dad was super unlucky)
There is ongoing research and clinical trials but as of yet there is no good treatment for metastatic uveal cancers, some people can respond well to treatments and for others like Dad it just doesn’t work and currently no one seems to know why.
As Dad’s cancer is so rare we wanted to make sure that any fundraising could be used directly by the scientists researching it. Rare conditions are often underfunded and money can really help boost research and understanding.
Liverpool’s Occular Oncology Research Group is actively publishing research and hopefully any donations can help discover the breakthrough that is so desperately needed! www.loorg.org