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Ocular Melanoma patient who would like to offer supportive tips?

Forums Ocular Melanoma Community Ocular Melanoma patient who would like to offer supportive tips?

  • Post
    Aileen
    Participant

      A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

      A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

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        Bugandi
        Participant

          Hi,

          I was diagnosed with Conjunctival melanoma in 2005.  Not sure which for of occular melanoma you have.   At any rate, I went through 2 surgerys where the tumor was removed from the conjunctiva, and in 2007, the tumor returned behind my left eye.  I had surery at mayo clinic in minnesota, where I lost my left eye because the tumor was so large, and the margins needed didn't allow me to keep my eyelids either.  My eye was sewn shut.  I then went through some intense radiation followed by a regimen of leukine treatments.  At first it was a little difficult to cope, but have come a long way in the last 3 years.  I did have a recurrence recently in my groin.  Luckily, I still have perfect vision in my right eye.  Anyway, I will be happy to try to answer any questions for you, whatever they may be. 

          Bryan

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            SuzannefromCA
            Participant

              Wow, I can't believe that all this irregular time I have come on this board, I found someone that has what I have, at least, I think. I was diagnosed with conjunctival melanoma in 2003. My diagnosis is called Primary Acquired Melanosis. I have had 14 surgeries on my eye. I just came back two days ago from Wills Eye Hospital. What I thought they were going to recommend was having my eye removed. They ended up doing surgery with the cryotherapy all over the surface of my eye.

              In 2006 the melanoma cells spread to my lymph nodes underneath my jaw, and I had a radical neck dissection. Unbeknownst to me at the time was that I had a tumor on my lung. Had aggressive Biochemotherapy for a year and a half, and no recurrences on my eye at that time. However, this has been my third eye surgery in 2010.

              The doctor in Philly told me that the conjunctiva only is on the surface of the eyeball and lids. She made me feel comfortable that it could not go behind the eye unless it was originating on the surface. Did your tumor start on the front and then go to the back?

              Like you, I have done Leukine (self injections in between my biochemo hospital stays). I am so sorry you lost your eye and I was prepared that I might have been having that done in Philly. I have no idea what the future holds, it may still happen to me, but rather an eye than a life., and I see that you are coping really well. What will your doctors be having you do for your recurrence?

              Where do you live, Bryan? I live in California and will go back and forth for the PAM to Philly and San Francisco.

              Keep me posted please,

              Suzanne

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              SuzannefromCA
              Participant

                Wow, I can't believe that all this irregular time I have come on this board, I found someone that has what I have, at least, I think. I was diagnosed with conjunctival melanoma in 2003. My diagnosis is called Primary Acquired Melanosis. I have had 14 surgeries on my eye. I just came back two days ago from Wills Eye Hospital. What I thought they were going to recommend was having my eye removed. They ended up doing surgery with the cryotherapy all over the surface of my eye.

                In 2006 the melanoma cells spread to my lymph nodes underneath my jaw, and I had a radical neck dissection. Unbeknownst to me at the time was that I had a tumor on my lung. Had aggressive Biochemotherapy for a year and a half, and no recurrences on my eye at that time. However, this has been my third eye surgery in 2010.

                The doctor in Philly told me that the conjunctiva only is on the surface of the eyeball and lids. She made me feel comfortable that it could not go behind the eye unless it was originating on the surface. Did your tumor start on the front and then go to the back?

                Like you, I have done Leukine (self injections in between my biochemo hospital stays). I am so sorry you lost your eye and I was prepared that I might have been having that done in Philly. I have no idea what the future holds, it may still happen to me, but rather an eye than a life., and I see that you are coping really well. What will your doctors be having you do for your recurrence?

                Where do you live, Bryan? I live in California and will go back and forth for the PAM to Philly and San Francisco.

                Keep me posted please,

                Suzanne

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              Bugandi
              Participant

                Hi,

                I was diagnosed with Conjunctival melanoma in 2005.  Not sure which for of occular melanoma you have.   At any rate, I went through 2 surgerys where the tumor was removed from the conjunctiva, and in 2007, the tumor returned behind my left eye.  I had surery at mayo clinic in minnesota, where I lost my left eye because the tumor was so large, and the margins needed didn't allow me to keep my eyelids either.  My eye was sewn shut.  I then went through some intense radiation followed by a regimen of leukine treatments.  At first it was a little difficult to cope, but have come a long way in the last 3 years.  I did have a recurrence recently in my groin.  Luckily, I still have perfect vision in my right eye.  Anyway, I will be happy to try to answer any questions for you, whatever they may be. 

                Bryan

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                SuzannefromCA
                Participant

                  I live in California and go to Devron Char in San Francisco. What type of ocular mel does he have? I know the most common is Choroidal melanoma, and the one I have is Primary Acquired Melanosis also known as Conjunctival Melanoma like Bryan.  I have had proton beam radiation, Mitomycin eyedrops, 5FU eyedrops and 14 cryotherapy surgeries to freeze off the dark pigmentation on my eye. I have also gone through Biochemotherapy with the various drugs that that entails.

                  ~Suzanne

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                    bgweiss
                    Participant

                      I was diagnosed with conjunctival melanoma after a surgery that removed the brown spot that suddenly appeared on the white of my eye.  That surgery took place June 2011.  I had cryotherapy in July 2011.  I return to the doctor in 2 weeks for a 3 month follow up.  This is all new to me and I do not know what to expect as time goes on.  I pray for no reoccurence. 

                      Anyone else out there with similar desease?

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                      bgweiss
                      Participant

                        I was diagnosed with conjunctival melanoma after a surgery that removed the brown spot that suddenly appeared on the white of my eye.  That surgery took place June 2011.  I had cryotherapy in July 2011.  I return to the doctor in 2 weeks for a 3 month follow up.  This is all new to me and I do not know what to expect as time goes on.  I pray for no reoccurence. 

                        Anyone else out there with similar desease?

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                        bgweiss
                        Participant

                          I was diagnosed with conjunctival melanoma after a surgery that removed the brown spot that suddenly appeared on the white of my eye.  That surgery took place June 2011.  I had cryotherapy in July 2011.  I return to the doctor in 2 weeks for a 3 month follow up.  This is all new to me and I do not know what to expect as time goes on.  I pray for no reoccurence. 

                          Anyone else out there with similar desease?

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                        SuzannefromCA
                        Participant

                          I live in California and go to Devron Char in San Francisco. What type of ocular mel does he have? I know the most common is Choroidal melanoma, and the one I have is Primary Acquired Melanosis also known as Conjunctival Melanoma like Bryan.  I have had proton beam radiation, Mitomycin eyedrops, 5FU eyedrops and 14 cryotherapy surgeries to freeze off the dark pigmentation on my eye. I have also gone through Biochemotherapy with the various drugs that that entails.

                          ~Suzanne

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