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Ocular Melanoma

› Forums › Ocular Melanoma Community › Ocular Melanoma

  • Post
    • September 28, 2012 at 1:33 pm
    Kimmie Kay
    Participant

      I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

      I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

      He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

      Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

      I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

      I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

      He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

      Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

      My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

      I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

      Can anyone help me? 

    Viewing 8 reply threads
    • Replies
        • September 28, 2012 at 2:59 pm
        CarolA
        Participant

          It would be helpful for you to look for "Go to the Cure OM Forum" provided here under the heading of Community,

          or in the "Connect with Patients" column, Bulletin Board, and scrolll to that topic.    I hope you find help from others with OM in that forum.

           

          Carol A

          • September 28, 2012 at 2:59 pm
          CarolA
          Participant

            It would be helpful for you to look for "Go to the Cure OM Forum" provided here under the heading of Community,

            or in the "Connect with Patients" column, Bulletin Board, and scrolll to that topic.    I hope you find help from others with OM in that forum.

             

            Carol A

            • September 28, 2012 at 2:59 pm
            CarolA
            Participant

              It would be helpful for you to look for "Go to the Cure OM Forum" provided here under the heading of Community,

              or in the "Connect with Patients" column, Bulletin Board, and scrolll to that topic.    I hope you find help from others with OM in that forum.

               

              Carol A

              • September 28, 2012 at 3:42 pm
              Janner
              Participant

                As Carol said, check in at the Ocular Melanoma portion of this site.  They can help you there better than we can.  In addition, I know where I live, you can legally drive with one eye.  Having had many eye surgeries myself, I have had an eye patched at different times and was also legally blind in one eye after surgery (which improved over time).  I was legally able to drive.  I can't say my depth perception was wonderful but it got better as I got used to things.  I don't know if that applies to commercial licenses – it would be best to check with your doctor or driver's license division about what is legal in your area.

                • September 28, 2012 at 3:42 pm
                Janner
                Participant

                  As Carol said, check in at the Ocular Melanoma portion of this site.  They can help you there better than we can.  In addition, I know where I live, you can legally drive with one eye.  Having had many eye surgeries myself, I have had an eye patched at different times and was also legally blind in one eye after surgery (which improved over time).  I was legally able to drive.  I can't say my depth perception was wonderful but it got better as I got used to things.  I don't know if that applies to commercial licenses – it would be best to check with your doctor or driver's license division about what is legal in your area.

                  • September 28, 2012 at 3:42 pm
                  Janner
                  Participant

                    As Carol said, check in at the Ocular Melanoma portion of this site.  They can help you there better than we can.  In addition, I know where I live, you can legally drive with one eye.  Having had many eye surgeries myself, I have had an eye patched at different times and was also legally blind in one eye after surgery (which improved over time).  I was legally able to drive.  I can't say my depth perception was wonderful but it got better as I got used to things.  I don't know if that applies to commercial licenses – it would be best to check with your doctor or driver's license division about what is legal in your area.

                    • September 28, 2012 at 4:41 pm
                    SuzannefromCA
                    Participant

                      Hi,

                      There is the Ocular site on this board. Also, if you are on facebook we have a huge group of Ocular Mel people and the site is private so that employers, family, etc. will not see your posts.

                      I have Ocular Melanoma that is a rare one. It is on the conjunctival surface rather than inside the eye. The most common site is what you have, Choroidal Melanoma. I am one of the patient profiles on here. I would love to invite you to our Ocular Group, it will help you greatly!

                      There also will be an Ocular Symposium in Houston at MD Anderson in March. I went to the one in Philadelphia last June. The doctors from the Wills Eye Hospital spoke.

                      You can contact me through here or in a private email @[email protected]

                      I look forward to meeting you and getting you some valuable connections!

                      Suzanne

                        • October 2, 2012 at 3:57 pm
                        Kimmie Kay
                        Participant

                          Suzanne, I am on facebook, how can I find the group there? (I just sent you an email also 🙂

                          Kim

                          • October 2, 2012 at 5:17 pm
                          SuzannefromCA
                          Participant

                            Hi Kimmie, I will friend request you, and then add you. You will really like the group!

                            Suzanne

                            • October 2, 2012 at 5:17 pm
                            SuzannefromCA
                            Participant

                              Hi Kimmie, I will friend request you, and then add you. You will really like the group!

                              Suzanne

                              • October 2, 2012 at 5:17 pm
                              SuzannefromCA
                              Participant

                                Hi Kimmie, I will friend request you, and then add you. You will really like the group!

                                Suzanne

                                • October 2, 2012 at 3:57 pm
                                Kimmie Kay
                                Participant

                                  Suzanne, I am on facebook, how can I find the group there? (I just sent you an email also 🙂

                                  Kim

                                  • October 2, 2012 at 3:57 pm
                                  Kimmie Kay
                                  Participant

                                    Suzanne, I am on facebook, how can I find the group there? (I just sent you an email also 🙂

                                    Kim

                                  • September 28, 2012 at 4:41 pm
                                  SuzannefromCA
                                  Participant

                                    Hi,

                                    There is the Ocular site on this board. Also, if you are on facebook we have a huge group of Ocular Mel people and the site is private so that employers, family, etc. will not see your posts.

                                    I have Ocular Melanoma that is a rare one. It is on the conjunctival surface rather than inside the eye. The most common site is what you have, Choroidal Melanoma. I am one of the patient profiles on here. I would love to invite you to our Ocular Group, it will help you greatly!

                                    There also will be an Ocular Symposium in Houston at MD Anderson in March. I went to the one in Philadelphia last June. The doctors from the Wills Eye Hospital spoke.

                                    You can contact me through here or in a private email @[email protected]

                                    I look forward to meeting you and getting you some valuable connections!

                                    Suzanne

                                    • September 28, 2012 at 4:41 pm
                                    SuzannefromCA
                                    Participant

                                      Hi,

                                      There is the Ocular site on this board. Also, if you are on facebook we have a huge group of Ocular Mel people and the site is private so that employers, family, etc. will not see your posts.

                                      I have Ocular Melanoma that is a rare one. It is on the conjunctival surface rather than inside the eye. The most common site is what you have, Choroidal Melanoma. I am one of the patient profiles on here. I would love to invite you to our Ocular Group, it will help you greatly!

                                      There also will be an Ocular Symposium in Houston at MD Anderson in March. I went to the one in Philadelphia last June. The doctors from the Wills Eye Hospital spoke.

                                      You can contact me through here or in a private email @[email protected]

                                      I look forward to meeting you and getting you some valuable connections!

                                      Suzanne

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