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Amy K

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      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!!

        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!!

          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!!

            Amy K
            Participant

              Very interesting to read!  Glad you're doing a bit better now.  

              My husband's eye became painful a month or two before he was diagnosed with stage 4 melanoma.  Throughout the 6 months of starting chemo, he had iritis, neovascular glaucoma, painful light sensitivity and a detached retina.  This is all in his left eye.  He is still hoping to regain his sight in this eye. 

              He started the plx trial Sept 2010 but got the chemo arm.  The chemo worked great on his tumors but his eye kept getting worse.  Now that he has crossed over to the BRAF inhibitor drug his eye has been getting better and feels a lot better.  

              We have wondered if the eye pain/problems are related to an auto-immune response or from melanoma.  Melanoma is known to metastisize to the eye since there are pigmented cells that line the eye and are in the iris.  For many months we had never been able to find cancer cells in the eye with many many tests including taking out the vitreous fluid from the eye for pathology.  

              Recently a melanoma tumor grew between his eye lid and eye ball.  We had it surgically removed since it was growing so fast.  Since being on BRAF it hasn't grown back.    

              As far as we can tell BRAF has really helped his eye on several accounts.  (now if he can just handle all the joint pain to keep going on this drug. )

              Thanks for sharing  your experience.

              Amy K
              Participant

                Very interesting to read!  Glad you're doing a bit better now.  

                My husband's eye became painful a month or two before he was diagnosed with stage 4 melanoma.  Throughout the 6 months of starting chemo, he had iritis, neovascular glaucoma, painful light sensitivity and a detached retina.  This is all in his left eye.  He is still hoping to regain his sight in this eye. 

                He started the plx trial Sept 2010 but got the chemo arm.  The chemo worked great on his tumors but his eye kept getting worse.  Now that he has crossed over to the BRAF inhibitor drug his eye has been getting better and feels a lot better.  

                We have wondered if the eye pain/problems are related to an auto-immune response or from melanoma.  Melanoma is known to metastisize to the eye since there are pigmented cells that line the eye and are in the iris.  For many months we had never been able to find cancer cells in the eye with many many tests including taking out the vitreous fluid from the eye for pathology.  

                Recently a melanoma tumor grew between his eye lid and eye ball.  We had it surgically removed since it was growing so fast.  Since being on BRAF it hasn't grown back.    

                As far as we can tell BRAF has really helped his eye on several accounts.  (now if he can just handle all the joint pain to keep going on this drug. )

                Thanks for sharing  your experience.

                Amy K
                Participant

                  Keep up the hard work!  I don't usually comment on here, but I had to let you know dacarbazine can work!  My husband had 35 sub-cutaneous tumors August of 2010.  He did 6 months of chemo.  And guess what?  After 6 months he was NED!  All 35 tumors slowly shrunk away and were gone.  This had the doctors and of course us so happy.  The doctors don't see that very often, but I had to let you know that there is hope!  Good luck!  Keep up the hard fight!  

                  Amy K
                  Participant

                    Keep up the hard work!  I don't usually comment on here, but I had to let you know dacarbazine can work!  My husband had 35 sub-cutaneous tumors August of 2010.  He did 6 months of chemo.  And guess what?  After 6 months he was NED!  All 35 tumors slowly shrunk away and were gone.  This had the doctors and of course us so happy.  The doctors don't see that very often, but I had to let you know that there is hope!  Good luck!  Keep up the hard fight!  

                    Amy K
                    Participant

                      Emily and others, 

                      I think I found the same club here.  My husband's cancer came back late August as stage 4.  We decided on the Roche BRAF trial also and got the news that we got dacarbazine.  Argh, so frustrating.  For us, dacarbazine has worked!  After 6 months of that awful dacarbizine, all 35 of his tumors (mostly all in the sub-q) are gone!  We don't know how long they'll be gone for…but, we're enjoying the break from chemo.  That chemo. is still having effects on my husband – fatigue, "chemo-brain" and then he is having major problems with his eye (no cancer found there, but no doctor knows what is causing his eye severe pain).  

                      My husband is the same so positive and I'm the one who probably worries more.  We have also cut out sugar and red meat…  

                      I don't have any advice on the new GSK trial, but we had been looking into that when we got randomized to chemo.  Let us know how it goes if you decide on that.  We'd be interested.  

                      Just thought I had to respond since so you and so many on this comment thread had similarities.  Good luck to you all as we care for our wonderful husbands.

                      Amy K
                      Participant

                        Emily and others, 

                        I think I found the same club here.  My husband's cancer came back late August as stage 4.  We decided on the Roche BRAF trial also and got the news that we got dacarbazine.  Argh, so frustrating.  For us, dacarbazine has worked!  After 6 months of that awful dacarbizine, all 35 of his tumors (mostly all in the sub-q) are gone!  We don't know how long they'll be gone for…but, we're enjoying the break from chemo.  That chemo. is still having effects on my husband – fatigue, "chemo-brain" and then he is having major problems with his eye (no cancer found there, but no doctor knows what is causing his eye severe pain).  

                        My husband is the same so positive and I'm the one who probably worries more.  We have also cut out sugar and red meat…  

                        I don't have any advice on the new GSK trial, but we had been looking into that when we got randomized to chemo.  Let us know how it goes if you decide on that.  We'd be interested.  

                        Just thought I had to respond since so you and so many on this comment thread had similarities.  Good luck to you all as we care for our wonderful husbands.

                        Amy K
                        Participant

                          Thanks, those are good points about the "changing landscape" in the melanoma field.  That's why I'm grateful for this site to keep up to date about the new changes that are happening. 

                          Amy K
                          Participant

                            Thanks, those are good points about the "changing landscape" in the melanoma field.  That's why I'm grateful for this site to keep up to date about the new changes that are happening. 

                            Amy K
                            Participant

                              Carmon, 

                              Both the patient and the caregiver sure have hard, scary jobs!  That's great your tumors are shrinking so nicely and you have one more infusion!  Sorry you're having eye problems too.  We did have a MRI and PET and no sign of anything in the brain(other than a big brain of course).  Maybe if we still can't figure out what's going on with his eye, we'll have to do an MRI again.  My husband's eye sounds a bit different than yours.  His is caused by lots of pressure in the eye and lots of blood vessels forming.  It got really bad before he even started chemo.  Happy 58th coming up soon!

                              Amy K
                              Participant

                                Carmon, 

                                Both the patient and the caregiver sure have hard, scary jobs!  That's great your tumors are shrinking so nicely and you have one more infusion!  Sorry you're having eye problems too.  We did have a MRI and PET and no sign of anything in the brain(other than a big brain of course).  Maybe if we still can't figure out what's going on with his eye, we'll have to do an MRI again.  My husband's eye sounds a bit different than yours.  His is caused by lots of pressure in the eye and lots of blood vessels forming.  It got really bad before he even started chemo.  Happy 58th coming up soon!

                                Amy K
                                Participant

                                  Wow, thank you for sharing that!!   I love hearing those stories of durable results even at stage 4!  We'll hope dacarbazine treats us as well.  ðŸ™‚  

                                  Amy K
                                  Participant

                                    Wow, thank you for sharing that!!   I love hearing those stories of durable results even at stage 4!  We'll hope dacarbazine treats us as well.  ðŸ™‚  

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