The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

ocular melanoma

Forums Ocular Melanoma Community ocular melanoma

  • Post
    ocularmonster
    Participant

    anyone out there have ocular melanoma that has metastized to your liver?

    anyone out there have ocular melanoma that has metastized to your liver?

    Loading spinner
Viewing 2 reply threads
  • Replies
      bcl
      Participant

      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

       

       

      http://forum.ocularmelanoma.org/

      Loading spinner
      jim Breitfeller
      Participant

      Try checking this site out.

      http://melanomamissionary.blogspot.com/search?q=ocular+melanoma

      Also, try unveal Melanoma

       

      What are the Known Treatments?


      A good web site to go for information from Patients like us is:

      http://www.lafn.org/~bc534/OcularMelMets.htm
       

      Take care

       

      Jimmy B

       

      Loading spinner
      sselig
      Participant

      Hello,

      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. 

      Best,

      Sara Selig

      [email protected]

      Loading spinner
Viewing 2 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

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.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.