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just dx with Ocular Melanoma – help appreciated

Forums Ocular Melanoma Community just dx with Ocular Melanoma – help appreciated

  • Post
    Thankful_Heart
    Participant

      have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball —  Radioactive 'seeds' =  Brachytherapy? OR certain Death  — { all I wanted was a New pair of eyeglasses :(  } – At Least they Found this in time' –  thoughts anyone?  

       

    Viewing 8 reply threads
    • Replies
        Janner
        Participant

          You posted on the cutaneous melanoma (skin) board.  Go back to the options above and you will find a separate link for an ocular melanoma board. Your questions will be better addressed there.

          Janner
          Participant

            You posted on the cutaneous melanoma (skin) board.  Go back to the options above and you will find a separate link for an ocular melanoma board. Your questions will be better addressed there.

            Janner
            Participant

              You posted on the cutaneous melanoma (skin) board.  Go back to the options above and you will find a separate link for an ocular melanoma board. Your questions will be better addressed there.

              arthurjedi007
              Participant

                Here's the link to the OM forum. I hope someone can help you. https://www.melanoma.org/find-support/patient-community/cure-om-forum

                Not sure if anyone on this forum knows much about it but maybe they do. Hopefully someone can help you. Sorry I know nothing about it. I met one guy briefly who had it but I don't think you want his crazy treatment. His first doc basically took one of his eyes out but then a few months later it showed up in the other eye. Now he is going to Siteman in Saint Louis doing some trial medicine but I don't know what it  is. Good luck to you.

                Artie

                 

                 

                arthurjedi007
                Participant

                  Here's the link to the OM forum. I hope someone can help you. https://www.melanoma.org/find-support/patient-community/cure-om-forum

                  Not sure if anyone on this forum knows much about it but maybe they do. Hopefully someone can help you. Sorry I know nothing about it. I met one guy briefly who had it but I don't think you want his crazy treatment. His first doc basically took one of his eyes out but then a few months later it showed up in the other eye. Now he is going to Siteman in Saint Louis doing some trial medicine but I don't know what it  is. Good luck to you.

                  Artie

                   

                   

                  arthurjedi007
                  Participant

                    Here's the link to the OM forum. I hope someone can help you. https://www.melanoma.org/find-support/patient-community/cure-om-forum

                    Not sure if anyone on this forum knows much about it but maybe they do. Hopefully someone can help you. Sorry I know nothing about it. I met one guy briefly who had it but I don't think you want his crazy treatment. His first doc basically took one of his eyes out but then a few months later it showed up in the other eye. Now he is going to Siteman in Saint Louis doing some trial medicine but I don't know what it  is. Good luck to you.

                    Artie

                     

                     

                    Fighting_OM
                    Participant

                      Sorry to hear about your diagnosis.  At 33 yrs. old I was diagnosed with ocular melanoma (OM) this November and went through brachytherapy before Thanksgiving.  The procedure is straight forward and involves the placement of a radioactive plaque to the eye which contains seeds to irradiate the tumor.  Over several days the plaque remains attached before being removed.  The operation isn't painless but it is better than having the eye removed.  I've been recovering and am now ~ 3 wks post operation.  The eye feels very good but the vision isn't great yet for me.  Vision prognosis is related to a lot of factors based on tumor size and location, so you should speak to your doctor about the procedure.  My tumor was close to the optic nerve and my doctor was very clear that I would likely lose a considerable amount of vision in my eye.  Your case may be much different.

                      Obviously you have to get it treated or it will mean certain death eventually but the idea that OM = death isn't true.  Tumor size and tumor genetics have a lot to do with the prognosis.  If caught early when the tumor is small, the risk of metastasis is a lot lower.  The genetics will also be very predictive of metastatic potential with monosomy 3 generally having a poor prognosis.  Your doctor should be able to direct you on genetic testing as part of the surgical preparation.  Which brings up a final point.  Who does your surgery can have a huge impact.  I assume you live in Pittsburgh and fortunately Philadelphia is home to the world experts in OM.  I strongly suggest you go to Wills Eye in Philly to be seen by Dr. Shields.  I hope that helps!

                      Fighting_OM
                      Participant

                        Sorry to hear about your diagnosis.  At 33 yrs. old I was diagnosed with ocular melanoma (OM) this November and went through brachytherapy before Thanksgiving.  The procedure is straight forward and involves the placement of a radioactive plaque to the eye which contains seeds to irradiate the tumor.  Over several days the plaque remains attached before being removed.  The operation isn't painless but it is better than having the eye removed.  I've been recovering and am now ~ 3 wks post operation.  The eye feels very good but the vision isn't great yet for me.  Vision prognosis is related to a lot of factors based on tumor size and location, so you should speak to your doctor about the procedure.  My tumor was close to the optic nerve and my doctor was very clear that I would likely lose a considerable amount of vision in my eye.  Your case may be much different.

                        Obviously you have to get it treated or it will mean certain death eventually but the idea that OM = death isn't true.  Tumor size and tumor genetics have a lot to do with the prognosis.  If caught early when the tumor is small, the risk of metastasis is a lot lower.  The genetics will also be very predictive of metastatic potential with monosomy 3 generally having a poor prognosis.  Your doctor should be able to direct you on genetic testing as part of the surgical preparation.  Which brings up a final point.  Who does your surgery can have a huge impact.  I assume you live in Pittsburgh and fortunately Philadelphia is home to the world experts in OM.  I strongly suggest you go to Wills Eye in Philly to be seen by Dr. Shields.  I hope that helps!

                        Fighting_OM
                        Participant

                          Sorry to hear about your diagnosis.  At 33 yrs. old I was diagnosed with ocular melanoma (OM) this November and went through brachytherapy before Thanksgiving.  The procedure is straight forward and involves the placement of a radioactive plaque to the eye which contains seeds to irradiate the tumor.  Over several days the plaque remains attached before being removed.  The operation isn't painless but it is better than having the eye removed.  I've been recovering and am now ~ 3 wks post operation.  The eye feels very good but the vision isn't great yet for me.  Vision prognosis is related to a lot of factors based on tumor size and location, so you should speak to your doctor about the procedure.  My tumor was close to the optic nerve and my doctor was very clear that I would likely lose a considerable amount of vision in my eye.  Your case may be much different.

                          Obviously you have to get it treated or it will mean certain death eventually but the idea that OM = death isn't true.  Tumor size and tumor genetics have a lot to do with the prognosis.  If caught early when the tumor is small, the risk of metastasis is a lot lower.  The genetics will also be very predictive of metastatic potential with monosomy 3 generally having a poor prognosis.  Your doctor should be able to direct you on genetic testing as part of the surgical preparation.  Which brings up a final point.  Who does your surgery can have a huge impact.  I assume you live in Pittsburgh and fortunately Philadelphia is home to the world experts in OM.  I strongly suggest you go to Wills Eye in Philly to be seen by Dr. Shields.  I hope that helps!

                            Thankful_Heart
                            Participant

                              Forgive me, 'Wolverine' – I only just now saw your thoughtful reply! 

                              [  I thought this reply would be sent via email  ]

                              Thank you for taking the time to write –

                              I am VERY sorry that you have had to deal with Ocular Melanoma at your young age – I will pray daily for 

                              you & yours – Very glad to learn you are recovering beautifully!!

                              I have been seen by Dr Rath @ RetinalVitreous Consultants,     Pittsburgh – dr rath states she has over 10 years experience doing Radiation – Brachytherapy as you've done –

                              my 'surgery' is planned for Jan 12 but I wish to explore More Options ,,, youtube has some

                              info, by  UK dr – Dr Paul Nathan is one – Systemic immuno Target therapies . . .

                              Merry Christmas – Bestest Blessings of The Most  High God in 2015 !!!

                              Kate . . .   Hope springs eternal  

                              ps  Jeremy, 38, an acquaintance of my best friend, Also was treated @ Wills 2 yr ago and doing WELL!!

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                              Thankful_Heart
                              Participant

                                Forgive me, 'Wolverine' – I only just now saw your thoughtful reply! 

                                [  I thought this reply would be sent via email  ]

                                Thank you for taking the time to write –

                                I am VERY sorry that you have had to deal with Ocular Melanoma at your young age – I will pray daily for 

                                you & yours – Very glad to learn you are recovering beautifully!!

                                I have been seen by Dr Rath @ RetinalVitreous Consultants,     Pittsburgh – dr rath states she has over 10 years experience doing Radiation – Brachytherapy as you've done –

                                my 'surgery' is planned for Jan 12 but I wish to explore More Options ,,, youtube has some

                                info, by  UK dr – Dr Paul Nathan is one – Systemic immuno Target therapies . . .

                                Merry Christmas – Bestest Blessings of The Most  High God in 2015 !!!

                                Kate . . .   Hope springs eternal  

                                ps  Jeremy, 38, an acquaintance of my best friend, Also was treated @ Wills 2 yr ago and doing WELL!!

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                Thankful_Heart
                                Participant

                                  Forgive me, 'Wolverine' – I only just now saw your thoughtful reply! 

                                  [  I thought this reply would be sent via email  ]

                                  Thank you for taking the time to write –

                                  I am VERY sorry that you have had to deal with Ocular Melanoma at your young age – I will pray daily for 

                                  you & yours – Very glad to learn you are recovering beautifully!!

                                  I have been seen by Dr Rath @ RetinalVitreous Consultants,     Pittsburgh – dr rath states she has over 10 years experience doing Radiation – Brachytherapy as you've done –

                                  my 'surgery' is planned for Jan 12 but I wish to explore More Options ,,, youtube has some

                                  info, by  UK dr – Dr Paul Nathan is one – Systemic immuno Target therapies . . .

                                  Merry Christmas – Bestest Blessings of The Most  High God in 2015 !!!

                                  Kate . . .   Hope springs eternal  

                                  ps  Jeremy, 38, an acquaintance of my best friend, Also was treated @ Wills 2 yr ago and doing WELL!!

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

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