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Hi there, I have no experience but I came across a fairly active ocular melanoma patient forum a while ago when I was concerned about a mole on my optic nerve. Hope it is of some assistance to you, linda
I am so sorry to hear that you are dealing with this right now. My 35 year old husband was diagnosed with liver mets almost 3 years ago, one year after his primary eye tumor was treated. We were VERY discouraged by how little we found in the way of resources and information about ocular melanoma and so have gotten very involved in the Ocular Melanoma Foundation (OMF): http://www.ocularmelanoma.org– I am now the Vice Chair of the board and Director of Medical Initiatives. We have an active patient forum on our site and are planning our First Annual Patient and Caregiver Conference: Eye Am Not Alone: Educating, Supporting and, Building Hope for the Ocular Melanoma Community. The meeting is being held in Boston at Dana-Farber Cancer Institute October 23-24th. The agenda and registration information can all be found on our website. This conference may be helpful for you as well as other patients interested in learning more about the disease, treatments, and trials as well as meeting other patients and starting to form a robust patient community.
I wish you the best on this difficult journey and please use OMF as a resource and let us know how we can better support you– we are just growing and learning and so welcome help and input form the community.
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
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