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New Choroidal Melanoma Patient

› Forums › General Melanoma Community › New Choroidal Melanoma Patient

  • Post
    • December 19, 2011 at 4:12 am
    TomJ6299
    Participant

      I was at work friday and I noticed my vision was very limited in my right eye. I went to an ER and an Optimologist was called in, he did what seemed like an ultra sound on my eye and found a tumor, he then informed me that it was Cancer. Since then it seems like a nightmare. Anyway my name is Tom, Im a 49 year old single widowed father of a great 15 year old boy who needs me. We live in louisiana and love LSU and the Saints. Im also a recovered alcoholic and drug addict , Ive been clean and sober since 2003. Any feedback will be greatly appreciated

      I was at work friday and I noticed my vision was very limited in my right eye. I went to an ER and an Optimologist was called in, he did what seemed like an ultra sound on my eye and found a tumor, he then informed me that it was Cancer. Since then it seems like a nightmare. Anyway my name is Tom, Im a 49 year old single widowed father of a great 15 year old boy who needs me. We live in louisiana and love LSU and the Saints. Im also a recovered alcoholic and drug addict , Ive been clean and sober since 2003. Any feedback will be greatly appreciated

    Viewing 5 reply threads
    • Replies
        • December 19, 2011 at 4:25 am
        Janner
        Participant

          Wow, what a whirlwind.  The vast majority of people who post on this BB have cutaneous melanoma (skin).  There is a new ocular melanoma forum which you should post on at:  http://www.melanoma.org/community/cure-om-forum.  Since ocular melanomas are quite different than cutaneous, you'll probably get more pertinent info there.

           Best wishes,

          Janner

            • December 19, 2011 at 4:37 am
            TomJ6299
            Participant

              Thank you Janner, but your link is not bringing me to a working page, so for now I am here

              • December 19, 2011 at 5:07 am
              Janner
              Participant

                Strange, not sure why the link wouldn't work correctly.  But if you go to the top of the page and click on Community, then you can scroll down to Other Forums and then click on the Cure OM Forum.  This is the ocular melanoma forum and the BB is up – just not sure why I couldn't link to it directly.

                Janner

                • December 19, 2011 at 5:07 am
                Janner
                Participant

                  Strange, not sure why the link wouldn't work correctly.  But if you go to the top of the page and click on Community, then you can scroll down to Other Forums and then click on the Cure OM Forum.  This is the ocular melanoma forum and the BB is up – just not sure why I couldn't link to it directly.

                  Janner

                  • December 19, 2011 at 5:07 am
                  Janner
                  Participant

                    Strange, not sure why the link wouldn't work correctly.  But if you go to the top of the page and click on Community, then you can scroll down to Other Forums and then click on the Cure OM Forum.  This is the ocular melanoma forum and the BB is up – just not sure why I couldn't link to it directly.

                    Janner

                    • December 19, 2011 at 5:29 am
                    WendyPam
                    Participant

                      Hi Tom,

                      My Mother has Stage 4 Mucosal Melanoma another very rare type. Please vist another wonderful forum that I visit everyday to read and post on, Melanoma International Foundation. When you go to that website please go to the webinar button on the top in blue. You need to watch the webinar on,

                      CURRENT TREATMENTS FOR MELANOMA OF THE EYE
                      Presented by Richard Carvajal, MD

                      This is a new webinar and I hope that it gives you some type of direction.  Someone will help you find the best Dr for your care. Please don't hesitate to post lots of questions.

                      All the best to you and a very happy holiday with your son!

                       

                      Warm regards,

                      Wendy

                      • December 19, 2011 at 5:29 am
                      WendyPam
                      Participant

                        Hi Tom,

                        My Mother has Stage 4 Mucosal Melanoma another very rare type. Please vist another wonderful forum that I visit everyday to read and post on, Melanoma International Foundation. When you go to that website please go to the webinar button on the top in blue. You need to watch the webinar on,

                        CURRENT TREATMENTS FOR MELANOMA OF THE EYE
                        Presented by Richard Carvajal, MD

                        This is a new webinar and I hope that it gives you some type of direction.  Someone will help you find the best Dr for your care. Please don't hesitate to post lots of questions.

                        All the best to you and a very happy holiday with your son!

                         

                        Warm regards,

                        Wendy

                        • December 19, 2011 at 5:29 am
                        WendyPam
                        Participant

                          Hi Tom,

                          My Mother has Stage 4 Mucosal Melanoma another very rare type. Please vist another wonderful forum that I visit everyday to read and post on, Melanoma International Foundation. When you go to that website please go to the webinar button on the top in blue. You need to watch the webinar on,

                          CURRENT TREATMENTS FOR MELANOMA OF THE EYE
                          Presented by Richard Carvajal, MD

                          This is a new webinar and I hope that it gives you some type of direction.  Someone will help you find the best Dr for your care. Please don't hesitate to post lots of questions.

                          All the best to you and a very happy holiday with your son!

                           

                          Warm regards,

                          Wendy

                          • December 19, 2011 at 6:04 am
                          TomJ6299
                          Participant

                            Thanks ! Same to You!

                            • December 19, 2011 at 8:59 am
                            WendyPam
                            Participant

                              Hi Tom,

                              I sent you a private e-mail. I hope that you received it ,

                               

                              Regards,
                              Wendy

                              • December 19, 2011 at 8:59 am
                              WendyPam
                              Participant

                                Hi Tom,

                                I sent you a private e-mail. I hope that you received it ,

                                 

                                Regards,
                                Wendy

                                • December 19, 2011 at 8:59 am
                                WendyPam
                                Participant

                                  Hi Tom,

                                  I sent you a private e-mail. I hope that you received it ,

                                   

                                  Regards,
                                  Wendy

                                  • December 19, 2011 at 6:04 am
                                  TomJ6299
                                  Participant

                                    Thanks ! Same to You!

                                    • December 19, 2011 at 6:04 am
                                    TomJ6299
                                    Participant

                                      Thanks ! Same to You!

                                      • December 19, 2011 at 4:37 am
                                      TomJ6299
                                      Participant

                                        Thank you Janner, but your link is not bringing me to a working page, so for now I am here

                                        • December 19, 2011 at 4:37 am
                                        TomJ6299
                                        Participant

                                          Thank you Janner, but your link is not bringing me to a working page, so for now I am here

                                        • December 19, 2011 at 4:25 am
                                        Janner
                                        Participant

                                          Wow, what a whirlwind.  The vast majority of people who post on this BB have cutaneous melanoma (skin).  There is a new ocular melanoma forum which you should post on at:  http://www.melanoma.org/community/cure-om-forum.  Since ocular melanomas are quite different than cutaneous, you'll probably get more pertinent info there.

                                           Best wishes,

                                          Janner

                                          • December 19, 2011 at 4:25 am
                                          Janner
                                          Participant

                                            Wow, what a whirlwind.  The vast majority of people who post on this BB have cutaneous melanoma (skin).  There is a new ocular melanoma forum which you should post on at:  http://www.melanoma.org/community/cure-om-forum.  Since ocular melanomas are quite different than cutaneous, you'll probably get more pertinent info there.

                                             Best wishes,

                                            Janner

                                            • December 29, 2011 at 5:54 pm
                                            SuzannefromCA
                                            Participant

                                              Hi Tom,

                                              I am an ocular cancer survivor and my journey began in 2003. My tumor was on the front of my eye, the conjunctival tissue. I heard this accounts for 2% of ocular mel cases. My story is long, but I just wanted to suggest Wills Eye Hospital in Philadelphia. I live in California and fly there 3 times a year. I just recently had my eye and lid removed because of continued local recurrence.

                                              They have an incredible group of doctors there. Never give up hope. I am 5 years NED!

                                              ~Suzanne

                                                • December 30, 2011 at 8:54 pm
                                                TomJ6299
                                                Participant

                                                  Hi suzanne, My right eye was removed at Wills Eye on 12/22, I had to make a difficult decision, my tumor was medium to large (10mm) my vision was terrible in that eye. So I decided to remove it. I guess I'm doing alright, had an MRI, liver was clear, chest X-Ray turned up a nodule, had CAT scan  this morning. Waiting on results now. I am researching as much as possible, Shields seems to be satisfied with Chest and MRI, 1x and 2x a year, Im not satisfied with that. Im working on setting up full body testing, I'm too lazy to go into details, lol, but the brain, bone, liver, lungs, skin will all be looked at very closely, by the latest and best imaging machines possible, I wont rest until I get my way. thanks for your support

                                                  • December 31, 2011 at 8:26 pm
                                                  SuzannefromCA
                                                  Participant

                                                    Hi Tom,

                                                    That was a fast decision to have your eye removed. Very courageous! You do have a regular oncologist I hope to order all the necessary scans, especially if you have a nodule on your lung. I hope you are adapting to the loss of your eye. For me it wasn't really a big issue since I had almost no vision in the eye anyway. I found a website called Losteye.com just before I lost mine. Please keep us posted as to how things are going.

                                                    Warm regards,

                                                    Suzanne

                                                    • December 31, 2011 at 8:26 pm
                                                    SuzannefromCA
                                                    Participant

                                                      Hi Tom,

                                                      That was a fast decision to have your eye removed. Very courageous! You do have a regular oncologist I hope to order all the necessary scans, especially if you have a nodule on your lung. I hope you are adapting to the loss of your eye. For me it wasn't really a big issue since I had almost no vision in the eye anyway. I found a website called Losteye.com just before I lost mine. Please keep us posted as to how things are going.

                                                      Warm regards,

                                                      Suzanne

                                                      • December 31, 2011 at 8:26 pm
                                                      SuzannefromCA
                                                      Participant

                                                        Hi Tom,

                                                        That was a fast decision to have your eye removed. Very courageous! You do have a regular oncologist I hope to order all the necessary scans, especially if you have a nodule on your lung. I hope you are adapting to the loss of your eye. For me it wasn't really a big issue since I had almost no vision in the eye anyway. I found a website called Losteye.com just before I lost mine. Please keep us posted as to how things are going.

                                                        Warm regards,

                                                        Suzanne

                                                        • December 30, 2011 at 8:54 pm
                                                        TomJ6299
                                                        Participant

                                                          Hi suzanne, My right eye was removed at Wills Eye on 12/22, I had to make a difficult decision, my tumor was medium to large (10mm) my vision was terrible in that eye. So I decided to remove it. I guess I'm doing alright, had an MRI, liver was clear, chest X-Ray turned up a nodule, had CAT scan  this morning. Waiting on results now. I am researching as much as possible, Shields seems to be satisfied with Chest and MRI, 1x and 2x a year, Im not satisfied with that. Im working on setting up full body testing, I'm too lazy to go into details, lol, but the brain, bone, liver, lungs, skin will all be looked at very closely, by the latest and best imaging machines possible, I wont rest until I get my way. thanks for your support

                                                          • December 30, 2011 at 8:54 pm
                                                          TomJ6299
                                                          Participant

                                                            Hi suzanne, My right eye was removed at Wills Eye on 12/22, I had to make a difficult decision, my tumor was medium to large (10mm) my vision was terrible in that eye. So I decided to remove it. I guess I'm doing alright, had an MRI, liver was clear, chest X-Ray turned up a nodule, had CAT scan  this morning. Waiting on results now. I am researching as much as possible, Shields seems to be satisfied with Chest and MRI, 1x and 2x a year, Im not satisfied with that. Im working on setting up full body testing, I'm too lazy to go into details, lol, but the brain, bone, liver, lungs, skin will all be looked at very closely, by the latest and best imaging machines possible, I wont rest until I get my way. thanks for your support

                                                          • December 29, 2011 at 5:54 pm
                                                          SuzannefromCA
                                                          Participant

                                                            Hi Tom,

                                                            I am an ocular cancer survivor and my journey began in 2003. My tumor was on the front of my eye, the conjunctival tissue. I heard this accounts for 2% of ocular mel cases. My story is long, but I just wanted to suggest Wills Eye Hospital in Philadelphia. I live in California and fly there 3 times a year. I just recently had my eye and lid removed because of continued local recurrence.

                                                            They have an incredible group of doctors there. Never give up hope. I am 5 years NED!

                                                            ~Suzanne

                                                            • December 29, 2011 at 5:54 pm
                                                            SuzannefromCA
                                                            Participant

                                                              Hi Tom,

                                                              I am an ocular cancer survivor and my journey began in 2003. My tumor was on the front of my eye, the conjunctival tissue. I heard this accounts for 2% of ocular mel cases. My story is long, but I just wanted to suggest Wills Eye Hospital in Philadelphia. I live in California and fly there 3 times a year. I just recently had my eye and lid removed because of continued local recurrence.

                                                              They have an incredible group of doctors there. Never give up hope. I am 5 years NED!

                                                              ~Suzanne

                                                          Viewing 5 reply threads
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