I feel totally well and have everything to live for, including marrying my long term partner Paul who I have been with for 43 years!
Back in 2013, I was diagnosed with a rare form of cancer called Ocular Melanoma. I had a tumour in my eye and the most suitable treatment was to have my eye removed. Since then, I haven’t let this stop me from enjoying life but it has been hard at times. I’ve been having regular scans to check if the cancer spread. Sadly it did and in 2016 two tumours were found on my liver.
I was treated with an immunotherapy and then another treatment which made me very ill so I was in and out of hospital until January 2017. Later that month I was offered a place on a trial drug, Selpac at Addenbrooke's Hospital, which worked well at first and shrunk my tumours by an amazing 50%! Unfortunately, last October scans showed most of my tumours were getting smaller but a new tiny one popped up. Because I was receiving the treatment on a trial, I wasn’t allowed to continue.
For most patients with ocular melanoma, doctors are normally more concerned about keeping tumours in the liver at bay. This was a real blow as my liver tumours were actually getting smaller with this treatment. I have spent the last six months searching for either a trial or treatment to prolong my life and so I can spend quality time with my family. This sounds crazy as I feel so well. I know I’m 60 but I always imagined ‘60’ feeling different, which I don’t, I feel great.
I’ve seen a specialist at The Christies in Manchester and others at various hospitals, who are all in agreement that a treatment called TILs is my best chance. This is where my story becomes hard. The cancer I have is a rare cancer and so there isn’t a lot of research happening to help people like me. Before a treatment can be approved to be given on the NHS, a clinical trial needs to run for several years to prove whether it works. These trials take A LOT of money and time just to set them up. There are so many treatments that could work but no one has had the money to test them. Once they are proven to work, it can then take years for NICE and the necessary other people to approve these treatments. So here we are.
There’s a treatment the doctors have given to other patients and they’ve seen a most people respond well to it but because it hadn’t had thousands & thousands of pounds researching it, it isn’t ‘officially’ proven. This means there is a treatment that top doctors believe is my best chance but I would have to pay for it myself. It costs an eye watering £80,000!!!
We are trying to raise the money together, but like most families this is desperately difficult for us. I’ve lived being the best mum and grandmother I could be through good and bad times but I can’t just pull this amount of money together and I need help.
There could be a clinical trial happening in the future so that others do not have the struggle I have, but I literally can’t wait for that to happen. I need treatment to start in the next few months to give me any sort of chance.
Please help me to have a long and fulfilling life with my children and grandchildren and give me a chance to walk down the isle with the love of my life and father of my children.
Trisha from Lowestoft x
- Nichola Hurst
- Christine Hurst
- Andrew Short
- Lynzi Butcher
- Vicky Waters
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