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Just an update

Forums General Melanoma Community Just an update

  • Post
    Jan in OC
    Participant

      Hi everyone, its been a busy month for us and I finally found time to get here!  

      Last month Dirk started having vision problems…Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision).  We had to visit the ophthalmologist…his vision has change 3 diopters in less than a month…they did not find any sign of Uveitis or RVO, so we are scheduled for an MRI of the brain next week to rule out Mets.  We will revisit the Dr to closely monitor his vision in the next few weeks.  

      Hi everyone, its been a busy month for us and I finally found time to get here!  

      Last month Dirk started having vision problems…Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision).  We had to visit the ophthalmologist…his vision has change 3 diopters in less than a month…they did not find any sign of Uveitis or RVO, so we are scheduled for an MRI of the brain next week to rule out Mets.  We will revisit the Dr to closely monitor his vision in the next few weeks.  

      We have been on Hoffman-LaRoche BRAF for 10 cycles (28 days each), and his last CT showed no change to his mets.  We are scheduled for another CT day before Thanksgiving.  Dirk also is going to Physical Therapy to gain more range of motion in his shoulders and try to get a little stronger.  He has been feeling very frustrated, can't see as well, can't reach for anything without pain, needs help getting dressed…so I have been working to get him help to improve those.

      On the positive side,  he did get to go to his 35 year high school reunion last week!!!  And we are grateful that he is still with us to celebrate the coming holidays (last year Dr said it may be his last xmas, scared the crap outta me!).  Halloween is this weekend, he is using all of his lymphedema wrap to scare the kids as a mummy!  What fun!  He still has his warped sense of humor and we try to keep laughter in the house.

      I will try to update after the MRI results are in.

      Stay strong

      Jan

       

       

       

       

       

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    • Replies
        jag
        Participant

          Hey Jan, sorry to hear that Dirk is having these kind of problems.  If it makes you feel any better, the most common sign of brain mets is flashing/double vision, not change in diopters, I'll knock on wood now that I said that and say a prayer for you guys.

           

          Best

          John

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          jag
          Participant

            Hey Jan, sorry to hear that Dirk is having these kind of problems.  If it makes you feel any better, the most common sign of brain mets is flashing/double vision, not change in diopters, I'll knock on wood now that I said that and say a prayer for you guys.

             

            Best

            John

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              Jan in OC
              Participant

                We initially went to check his eyes because he complained of less distance vision, blurry, seeing ghosts (double) and spots…they could not come up with an answer except nothing is wrong!  he was seriously frustrated!  At first he refused to go for the MRI..said if it was in his brain, he did not want to know!  He is worried about losing his freedom to drive and ride his motorcycle.  H e feels he has lost a lot already when he had to give up his mountain biking.  I am concerned with what they may find, but trying not to get all freaked out about it (I'm an expert at worrying).

                Jan

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                Jan in OC
                Participant

                  We initially went to check his eyes because he complained of less distance vision, blurry, seeing ghosts (double) and spots…they could not come up with an answer except nothing is wrong!  he was seriously frustrated!  At first he refused to go for the MRI..said if it was in his brain, he did not want to know!  He is worried about losing his freedom to drive and ride his motorcycle.  H e feels he has lost a lot already when he had to give up his mountain biking.  I am concerned with what they may find, but trying not to get all freaked out about it (I'm an expert at worrying).

                  Jan

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                  BethA in VA
                  Participant

                    I'm sorry you are struggling so much.  I will say an extra prayer for both of you.  Good Luck!  Beth 3/B

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                    BethA in VA
                    Participant

                      I'm sorry you are struggling so much.  I will say an extra prayer for both of you.  Good Luck!  Beth 3/B

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                      killmel
                      Participant

                        Hi Jan,

                        I am so sorry to hear about the vision problems.

                        I am a little confused with your statement:Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision). Not sure what you meant when you said "recently added two new ones. What did you mean by "two new ones" ??? Two new what??that effect the vision.

                        Thanks for the clarifacation and posting what you meant. I am thinking about going on BRAF and was not sure if Rouche added something to the Braf pill that cause vision problems??

                         

                        Try to stay strong & I am wishing you & Dirk a good outcome.

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                        Jan in OC
                        Participant

                          This study has been going for about a year and when we went to the Onc @ UCLA last week, they had us sign new "participation"  paperwork.  LaRoche is disclosing the discovery of two new side effects of their drug.  One is Uveitis and the other Retinal Vein Occlusion. 

                          Uveitis is treatable with steroid eye drops, the other is not.  Vision loss may be permanent and you are removed from the trial if you have RVO.

                          Sorry for any confusion.

                          Jan

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                          killmel
                          Participant

                            Jan,

                             

                            Thank you so much for telling us about the new vision side effects. I know many mpiprs on Braf…just in case they did not see your post..you might want to do another post "alerting" them of BRAF NEW VISION SIDE EFFECTS. I know they would appreciate an "alert"

                            Good luck again with the MRI. Please post results> We all care about you & Dirk.

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                            killmel
                            Participant

                              Jan,

                               

                              Thank you so much for telling us about the new vision side effects. I know many mpiprs on Braf…just in case they did not see your post..you might want to do another post "alerting" them of BRAF NEW VISION SIDE EFFECTS. I know they would appreciate an "alert"

                              Good luck again with the MRI. Please post results> We all care about you & Dirk.

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                              Jan in OC
                              Participant

                                This study has been going for about a year and when we went to the Onc @ UCLA last week, they had us sign new "participation"  paperwork.  LaRoche is disclosing the discovery of two new side effects of their drug.  One is Uveitis and the other Retinal Vein Occlusion. 

                                Uveitis is treatable with steroid eye drops, the other is not.  Vision loss may be permanent and you are removed from the trial if you have RVO.

                                Sorry for any confusion.

                                Jan

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                                killmel
                                Participant

                                  Hi Jan,

                                  I am so sorry to hear about the vision problems.

                                  I am a little confused with your statement:Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision). Not sure what you meant when you said "recently added two new ones. What did you mean by "two new ones" ??? Two new what??that effect the vision.

                                  Thanks for the clarifacation and posting what you meant. I am thinking about going on BRAF and was not sure if Rouche added something to the Braf pill that cause vision problems??

                                   

                                  Try to stay strong & I am wishing you & Dirk a good outcome.

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                                  jag
                                  Participant

                                    Jan, not to scare you but if you check my patnet, my first met was discovered on MRI with a slight change in vision that was not related to melanoma.  Tell Dirk that I have driven the whole time, only lost my driving ability for a year (when I had seizures), and am back to mountain biking and driving now.  e-mail me if you have any questions.  In the meantime, I will keep my fingers crossed, that the MRI comes up negative and he doesn't have permanent vision changes.

                                    Best

                                    John

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                                    jag
                                    Participant

                                      oh yeah, I am still alive first brain met (8/2006) years later and haven't actually had a recurrence in over 2 years.  The last 2 surgeries were clean up for the radiation damage.

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                                      jag
                                      Participant

                                        oh yeah, I am still alive first brain met (8/2006) years later and haven't actually had a recurrence in over 2 years.  The last 2 surgeries were clean up for the radiation damage.

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                                        jag
                                        Participant

                                          Jan, not to scare you but if you check my patnet, my first met was discovered on MRI with a slight change in vision that was not related to melanoma.  Tell Dirk that I have driven the whole time, only lost my driving ability for a year (when I had seizures), and am back to mountain biking and driving now.  e-mail me if you have any questions.  In the meantime, I will keep my fingers crossed, that the MRI comes up negative and he doesn't have permanent vision changes.

                                          Best

                                          John

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