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Ocular Melanoma

Forums Ocular Melanoma Community Ocular Melanoma

  • Post
    Wife of Carl
    Participant
      I have not been on this board recently. My husband was diagnosed with melanoma in 2009 and passed away in 2013. Today our only child was diagnosed with ocular melanoma. I am devastated at this news! I am located in Wisconsin. She is going to UW Madison for a consult on Tuesday and we will know more at that time. I am looking for someone that might be able to point us to the best location for treatment of ocular melanoma since it is a rare form of melanoma. Perhaps there is someone that has this form of melanoma and has had a successful treatment.

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        MelMel
        Participant
          Pat, I am so extremely sorry to hear about your daughter and I can only imagine what both of you are going through. I came across the following information which you may find useful.
          1. Ocular Melanoma Experts
          Specialists at the Wilmer Eye Institute at Johns Hopkins, consistently ranked among the best in the United States by U.S. News and World Report, treat eye cancers with the latest therapies, many pioneered by Wilmer physicians.
          https://www.hopkinsmedicine.org/kimmel_cancer_center/types_cancer/ocular_melanoma.html

          2. David Abramson cares for patients with melanoma of the eye; he’s also head of our ophthalmic oncology team, the only one of its kind in the United States.
          https://www.mskcc.org/cancer-care/types/melanoma/treatment/ocular-melanoma

          3. I am sure that most melanoma treatment centers have experts in dealing with ocular melanoma and the two mentioned above are just some you may consider.

          4. While researching pharmaceutical information for my immunotherapy drugs, I met a pharmacist who has a friend undergoing treatment for ocular melanoma. The patient was receiving radioactive plaque therapy (gold plate) and that they were doing well. Here is more info on that procedure but the kind of treatment depends on the exact location as well as the size of the tumor in the eye.

          Hopefully, your daughter’s is a very early stage and it maybe very treatable.
          Best wishes and please keep us updated.
          Melanie

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            MelMel
            Participant
              I forgot to attach the radioactive plaque treatment info.
              https://my.clevelandclinic.org/health/treatments/17410-radioactive-plaque-therapy

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              Wife of Carl
              Participant
                Melanie,
                Thank you so much for the information. My daughter is devastated since she knew what my husband went thru with melanoma. There are no symptoms with this kind of melanoma so it really blindsided us. We are praying that this has not metastizied. I do recall that with my husband, we had to be our own advocate. Most medical professionals that we came in contact with in the beginning of his journey were not helpful at all. Thank you again for the information it will be extremely helpful as we begin this journey. Your kindness and knowledge are very much appreciated.
                Pat

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              Bubbles
              Participant
                I am so very sorry for what you and your daughter have dealt with and are facing, Pat. UW Madison has a good reputation and is probably a good place to start. Here is a report that might interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/outcomes-of-acral-mucosal-and-uveal.html

                The lead author is Mario Sznol and he is located at the Yale School of Medicine in New Haven, CT – https://medicine.yale.edu/profile/mario_sznol/

                I wish you and your daughter my best. Celeste

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                  Wife of Carl
                  Participant
                    Thank you so much for your reply and concern. My daughter saw an ocular oncologist in Madison today. However, she left with more questions than answers. They are going to do testing to see if the ocular tumor is a primary or metastasized tumor, which seems reasonable. Now to wait for scheduling and test results.
                    Pat

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                  SOLE
                  Participant
                    Dear Pat,

                    I cannot make any recommendations for ocular melanoma but wholeheartedly trust what is written in the posts above. I was also diagnosed with a rare form of melanoma; «acral underneath the right foot where the sun never shines» in July 2016. I had a very bad deep tumour which did not metastasize then (lymph nodes apparently clear) and doesn’t seem to have to this day (although I am going for my yearly PET/CT early September for assessment). I can only offer my deepest respect and condolences to you and your daughter for your husband’s passing in 2013 and am so very sorry for what your daughter is going through. There is a limit to words and when such a occurrence like hers manifest, I would like to just shut up and hug you both.

                    Perhaps I can offer a little bit of hope and direct you to a long-time ocular melanoma survivor by the name of Patricia Daly. Look her up if you wish. I am not passing any judgement on anything she is doing and am rather just trying to offer some non-judgmental hope. One thing I strongly believe in (including all current immunotherapies regimen) is gut micro biome. Our big melanoma researchers are finding out that it plays a definite role. Again, look it up if it suits you.

                    You have my warmest support and know that you are not alone (if that can bring any solace)

                    Sincerely,

                    Marc

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                      Wife of Carl
                      Participant
                        Marc,
                        My daughter saw an ocular oncologist today. However she was left with a lot of questions. It seems that her tumor has some unusual qualities. I will look up the person that you mentioned. Thank you so much for your reply and concern. It is very appreciated.

                        Pat

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