I had original eye melanoma removed in 2007.
Since a raised gamma gt and liver scan a year ago 2020 I have metastic deposits in liver and one in my lung. Doesnt appear to be in lymph nodes. With Covid the diagnosis has taken a year. Mental strain has been enormous.
I am waiting to start treatment as I am a very fit person, on combination of Ipilimumbab and Nivolumab.
Also the Consultant writing to BARTS and UCL to see if any clinical trials are taking place.
If anyone has a similar experience with anything positive I would be pleased to hear.
Hi and a very warm welcome to the online community
I'm sorry to read that after being diagnosed with ocular melanoma back in 2007 you've recently discovered that it has spread to your liver and lung.
There are lots of people in the skin melanoma group who have had ipilimumab and nivolumab for treatment for melanoma which has spread. If you type those words into the search bar in the group it will bring up previous posts which mentions these drugs.
However, I don't know if they're used in the same way as for ocular melanoma so you might also like to join the eye cancer group which will connect you with others with this type of melanoma. If this is something that you'd like to do just click on the link I've created and you can then join and post in the same way as you did here.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
All the best with your treatment
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
