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Uveitis. Off Zelboraf for now. Scans tomorrow.
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Uveitis. Off Zelboraf for now. Scans tomorrow.

› Forums › General Melanoma Community › Uveitis. Off Zelboraf for now. Scans tomorrow.

  • Post
    • December 4, 2012 at 1:10 am
    Tina D
    Participant

      Developed a very red and extremely painful eye over the weekend.Very irritated and light sensitive. Saw eye Dr this am & dx is uveitis and synechia ( which is the iris "sticking" to the lens). Off Z for now until further instructions from Oncologist. Being treated with prednisolone drops every hour, and atropine drops 4Xday. My routine PET is tomorrow. This is the 2nd PET since starting Z in May of this yr.

      Developed a very red and extremely painful eye over the weekend.Very irritated and light sensitive. Saw eye Dr this am & dx is uveitis and synechia ( which is the iris "sticking" to the lens). Off Z for now until further instructions from Oncologist. Being treated with prednisolone drops every hour, and atropine drops 4Xday. My routine PET is tomorrow. This is the 2nd PET since starting Z in May of this yr. Thankful the uveitis seems to have been caught in time to not cause any permanent effects, but I am not sure if this will cause me to be unable to continue on the Zelboraf. I will post when I have scan results, and answers for the next step…

      Tina D

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    • Replies
        • December 4, 2012 at 4:17 am
        DeniseK
        Participant

          OMG Tina, it seems like its one thing or another.  I am so sorry your going through this.  Maybe then can put you back on Z at 1/2 dose.  It seems like everyone that is suffering side effects after they take a break and go on half a dose seem to tolerate it better.

          Best wishes to you!!

          Denise

          • December 4, 2012 at 4:17 am
          DeniseK
          Participant

            OMG Tina, it seems like its one thing or another.  I am so sorry your going through this.  Maybe then can put you back on Z at 1/2 dose.  It seems like everyone that is suffering side effects after they take a break and go on half a dose seem to tolerate it better.

            Best wishes to you!!

            Denise

            • December 4, 2012 at 4:17 am
            DeniseK
            Participant

              OMG Tina, it seems like its one thing or another.  I am so sorry your going through this.  Maybe then can put you back on Z at 1/2 dose.  It seems like everyone that is suffering side effects after they take a break and go on half a dose seem to tolerate it better.

              Best wishes to you!!

              Denise

              • December 4, 2012 at 6:24 am
              Amy K
              Participant

                Tina,

                I'm sorry you've developed uveitis and synechias.  This is interesting because my husband developed uveitis as one of his first signs that he had stage 4 melanoma.  He was very light sensitive and his eye bothered him.  He got on the BRAF trial and got DTIC and it actually worked.  Then his cancer came back and he got on the other arm of the trial, zelboraf.  He's been on zelboraf for 17 months NED!!!  His cancer is doing great.  His eye is still having problems, but it's not painful and bottom line is the cancer is gone!!!

                The reason I'm telling you this is because he developed his eye problems early on way before he was on zelboraf.  So, I just thought that maybe it's not zelboraf causing the eye problems for you either.  We are extremely happy on zelboraf (after he got reduced to half dose because of aches, rashes, joint pain etc). because the cancer has been gone for so long and we pray it can stay that way. 

                Please feel free to ask any questions, I just had to let you know his situation since he has had the same diagnosis in his eye too!  This cancer can do crazy things and so can the drugs to stop the cancer. 

                I wish you the best in your cancer fight and thanks for posting!!

                  • December 4, 2012 at 3:48 pm
                  Snickers60
                  Participant

                    TINA, praying everything goes WELL with your scans.   So sorry to learn you are having this EYE ISSUE.   Goodness, the

                    list seems endless doesn't it.    Praying for you.   Please update when you know something. 

                    Nancy (devoted wife of 3 X warrior Wayne)  <><

                    • December 4, 2012 at 3:48 pm
                    Snickers60
                    Participant

                      TINA, praying everything goes WELL with your scans.   So sorry to learn you are having this EYE ISSUE.   Goodness, the

                      list seems endless doesn't it.    Praying for you.   Please update when you know something. 

                      Nancy (devoted wife of 3 X warrior Wayne)  <><

                      • December 4, 2012 at 3:48 pm
                      Snickers60
                      Participant

                        TINA, praying everything goes WELL with your scans.   So sorry to learn you are having this EYE ISSUE.   Goodness, the

                        list seems endless doesn't it.    Praying for you.   Please update when you know something. 

                        Nancy (devoted wife of 3 X warrior Wayne)  <><

                      • December 4, 2012 at 6:24 am
                      Amy K
                      Participant

                        Tina,

                        I'm sorry you've developed uveitis and synechias.  This is interesting because my husband developed uveitis as one of his first signs that he had stage 4 melanoma.  He was very light sensitive and his eye bothered him.  He got on the BRAF trial and got DTIC and it actually worked.  Then his cancer came back and he got on the other arm of the trial, zelboraf.  He's been on zelboraf for 17 months NED!!!  His cancer is doing great.  His eye is still having problems, but it's not painful and bottom line is the cancer is gone!!!

                        The reason I'm telling you this is because he developed his eye problems early on way before he was on zelboraf.  So, I just thought that maybe it's not zelboraf causing the eye problems for you either.  We are extremely happy on zelboraf (after he got reduced to half dose because of aches, rashes, joint pain etc). because the cancer has been gone for so long and we pray it can stay that way. 

                        Please feel free to ask any questions, I just had to let you know his situation since he has had the same diagnosis in his eye too!  This cancer can do crazy things and so can the drugs to stop the cancer. 

                        I wish you the best in your cancer fight and thanks for posting!!

                        • December 4, 2012 at 6:24 am
                        Amy K
                        Participant

                          Tina,

                          I'm sorry you've developed uveitis and synechias.  This is interesting because my husband developed uveitis as one of his first signs that he had stage 4 melanoma.  He was very light sensitive and his eye bothered him.  He got on the BRAF trial and got DTIC and it actually worked.  Then his cancer came back and he got on the other arm of the trial, zelboraf.  He's been on zelboraf for 17 months NED!!!  His cancer is doing great.  His eye is still having problems, but it's not painful and bottom line is the cancer is gone!!!

                          The reason I'm telling you this is because he developed his eye problems early on way before he was on zelboraf.  So, I just thought that maybe it's not zelboraf causing the eye problems for you either.  We are extremely happy on zelboraf (after he got reduced to half dose because of aches, rashes, joint pain etc). because the cancer has been gone for so long and we pray it can stay that way. 

                          Please feel free to ask any questions, I just had to let you know his situation since he has had the same diagnosis in his eye too!  This cancer can do crazy things and so can the drugs to stop the cancer. 

                          I wish you the best in your cancer fight and thanks for posting!!

                          • December 4, 2012 at 4:34 pm
                          awillett1991
                          Participant
                            Tina,

                            I hate to hear this but I’m glad it was caught early. Ipi gave me iritis/uveitis and after 6 wks of the pred drops I’m am all clear.

                            I made it 2 Weeks on Z this time before I had to halt it (chills& fever broke the camels back). I start back tomorrow and my doc is planning this time to cycle me on and off with it so that I can tolerate it better, it’s effective, and hopefully also stay off steroids. Let us know about those scans – I will pray for you.

                            I did finish 4th round of Ipi yesterday, certainly not smooth but done! Keep us updated!

                            Amy

                            • December 4, 2012 at 4:34 pm
                            awillett1991
                            Participant
                              Tina,

                              I hate to hear this but I’m glad it was caught early. Ipi gave me iritis/uveitis and after 6 wks of the pred drops I’m am all clear.

                              I made it 2 Weeks on Z this time before I had to halt it (chills& fever broke the camels back). I start back tomorrow and my doc is planning this time to cycle me on and off with it so that I can tolerate it better, it’s effective, and hopefully also stay off steroids. Let us know about those scans – I will pray for you.

                              I did finish 4th round of Ipi yesterday, certainly not smooth but done! Keep us updated!

                              Amy

                              • December 4, 2012 at 4:34 pm
                              awillett1991
                              Participant
                                Tina,

                                I hate to hear this but I’m glad it was caught early. Ipi gave me iritis/uveitis and after 6 wks of the pred drops I’m am all clear.

                                I made it 2 Weeks on Z this time before I had to halt it (chills& fever broke the camels back). I start back tomorrow and my doc is planning this time to cycle me on and off with it so that I can tolerate it better, it’s effective, and hopefully also stay off steroids. Let us know about those scans – I will pray for you.

                                I did finish 4th round of Ipi yesterday, certainly not smooth but done! Keep us updated!

                                Amy

                                • December 6, 2012 at 12:12 am
                                Tina D
                                Participant

                                  Thanks everyone 🙂   . I posted a new update abt scan results. As for my eyes, the Oncologist attributes the uveitis to the Z. Not a real common occurance but can happen. My eye doc says there has been a little improvement. My pupil is shaped like a sideways heart due to my iris being adhered to my lens in 3 places. He said that part may not resolve, but that alone wont affect my vision.I told my husband "eye heart U", haha! The cloudy vision comes from white cells in the eye. I couldnt read the eye chart at all with my left eye. Eye pain is mostly gone, though. Continuing drops. Amy… I remember you briefly mentioned abt getting uveitis in a note somewhere, and you barely mentioned it in passing…. you had it for 6 WEEKS?! I am so glad to hear you have finished the ipi, but sorry you had such a hard time restarting the Zelboraf. Do they think that could possibly be because you were also still on the ipi? Praying for great results for you and hoping you feel better for the Christmas holiday season. 

                                  • December 6, 2012 at 12:12 am
                                  Tina D
                                  Participant

                                    Thanks everyone 🙂   . I posted a new update abt scan results. As for my eyes, the Oncologist attributes the uveitis to the Z. Not a real common occurance but can happen. My eye doc says there has been a little improvement. My pupil is shaped like a sideways heart due to my iris being adhered to my lens in 3 places. He said that part may not resolve, but that alone wont affect my vision.I told my husband "eye heart U", haha! The cloudy vision comes from white cells in the eye. I couldnt read the eye chart at all with my left eye. Eye pain is mostly gone, though. Continuing drops. Amy… I remember you briefly mentioned abt getting uveitis in a note somewhere, and you barely mentioned it in passing…. you had it for 6 WEEKS?! I am so glad to hear you have finished the ipi, but sorry you had such a hard time restarting the Zelboraf. Do they think that could possibly be because you were also still on the ipi? Praying for great results for you and hoping you feel better for the Christmas holiday season. 

                                    • December 6, 2012 at 12:12 am
                                    Tina D
                                    Participant

                                      Thanks everyone 🙂   . I posted a new update abt scan results. As for my eyes, the Oncologist attributes the uveitis to the Z. Not a real common occurance but can happen. My eye doc says there has been a little improvement. My pupil is shaped like a sideways heart due to my iris being adhered to my lens in 3 places. He said that part may not resolve, but that alone wont affect my vision.I told my husband "eye heart U", haha! The cloudy vision comes from white cells in the eye. I couldnt read the eye chart at all with my left eye. Eye pain is mostly gone, though. Continuing drops. Amy… I remember you briefly mentioned abt getting uveitis in a note somewhere, and you barely mentioned it in passing…. you had it for 6 WEEKS?! I am so glad to hear you have finished the ipi, but sorry you had such a hard time restarting the Zelboraf. Do they think that could possibly be because you were also still on the ipi? Praying for great results for you and hoping you feel better for the Christmas holiday season. 

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