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Ocular side effects to tafinlar/mekinist
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Ocular side effects to tafinlar/mekinist

› Forums › Ocular Melanoma Community › Ocular side effects to tafinlar/mekinist

  • Post
    • March 1, 2016 at 6:31 pm
    wasserd
    Participant
      I’ve been searching the forum and unable to find any posts here about the apparently less common ocular side effects to tafinlar/mekinist.

      I began tafinlar (solo) in mid-April 2015 as a result of multiple brain mets. The tumors responded well and I remained on tafinlar only, had gamma knife which was also successful. Then over the summer of 2015 the side effects began to accumulate – primarily thickening of my foot soles (making walking painful) and then in late August, a very painful uveitis in one eye.

      At this point I learned that the ocular side effects are so rare, my oncologist had only had one other patient experience them, and in their case it presented totally differently, and in both eyes simultaneously. My ophthalmologist, of course, had never had a patient experiencing uveitis secondary to cancer treatment.

      I got the uveitis under control, and started mekinist, which I think has mitigated the skin side effects, and even though I had two more cases of uveitis, they were not as severe.

      Now, after months of treatment with Prednisone eye drops (and now, beta blockers to bring down the pressure in my eyes, which was elevated by the Prednisone), I am about to stop using the Prednisone drops (at my own insistence – my ophthalmologist is understandably wpried about my stopping).

      My vision has returned to 20/20. The pressure is still elevated (in fact, it has increased), but I’m hoping that the combo of tafinlar and mekinist will keep me from experiencing another painful bout of uveitis.

      I have access to medical literature, so periodically I look for new papers on the subject, but I just wanted to check in here to see whether there might be any others like me, and what your course of treatment has been.

      Thanks,
      Deborah

      My melanoma/life blog: ill-live.com

    Viewing 5 reply threads
    • Replies
        • March 1, 2016 at 7:03 pm
        marta010
        Participant

          Deborah – over the past two years, my husband has had several bouts with Uveitis while on Tafinlar (he has not tolerated Mekinist).  He used Durozol steroid drops while the inflamation was at it's worst.  Once under control, he continues to use Prednisolone eye drops (1 drop each eye once a day) as a maintenance treatment.  His opthomologist has seen a few other cases of treament induced uveitis in other melanoma patients.  Not sure why you want to discontinue Prednisolone as this seems a very minor treatment to maintain your eye health, especially with your eye pressure increasing.  Do you have other concerns about the impact on your overall treatment?

          Ann

            • March 2, 2016 at 12:39 am
            wasserd
            Participant

              Thanks, Ann.

              According to my ophthalmologist, the increased eye pressure is actually caused by the prednisone drops. And, extended use of the prednisone drops can eventually result in cataracts. So, now that the uveitis has been under control for some time, I'm going to go off the prednisone drops and see what happens. My vision is now back to 20/20, which is also great, but in the interest of not possibly developing cataracts, I'm trying to do without the prednisone. If I start to develop uveitis again, naturally I'll go back on the drops.

              With the combination of Tafinlar and Mekinst, I have found the side effects much less intense than when I was on Tafinlar alone. (I also had painful thickening of the soles of my feet last year, and that is completely gone now.)

              • March 2, 2016 at 12:39 am
              wasserd
              Participant

                Thanks, Ann.

                According to my ophthalmologist, the increased eye pressure is actually caused by the prednisone drops. And, extended use of the prednisone drops can eventually result in cataracts. So, now that the uveitis has been under control for some time, I'm going to go off the prednisone drops and see what happens. My vision is now back to 20/20, which is also great, but in the interest of not possibly developing cataracts, I'm trying to do without the prednisone. If I start to develop uveitis again, naturally I'll go back on the drops.

                With the combination of Tafinlar and Mekinst, I have found the side effects much less intense than when I was on Tafinlar alone. (I also had painful thickening of the soles of my feet last year, and that is completely gone now.)

                • March 2, 2016 at 12:39 am
                wasserd
                Participant

                  Thanks, Ann.

                  According to my ophthalmologist, the increased eye pressure is actually caused by the prednisone drops. And, extended use of the prednisone drops can eventually result in cataracts. So, now that the uveitis has been under control for some time, I'm going to go off the prednisone drops and see what happens. My vision is now back to 20/20, which is also great, but in the interest of not possibly developing cataracts, I'm trying to do without the prednisone. If I start to develop uveitis again, naturally I'll go back on the drops.

                  With the combination of Tafinlar and Mekinst, I have found the side effects much less intense than when I was on Tafinlar alone. (I also had painful thickening of the soles of my feet last year, and that is completely gone now.)

                • March 1, 2016 at 7:03 pm
                marta010
                Participant

                  Deborah – over the past two years, my husband has had several bouts with Uveitis while on Tafinlar (he has not tolerated Mekinist).  He used Durozol steroid drops while the inflamation was at it's worst.  Once under control, he continues to use Prednisolone eye drops (1 drop each eye once a day) as a maintenance treatment.  His opthomologist has seen a few other cases of treament induced uveitis in other melanoma patients.  Not sure why you want to discontinue Prednisolone as this seems a very minor treatment to maintain your eye health, especially with your eye pressure increasing.  Do you have other concerns about the impact on your overall treatment?

                  Ann

                  • March 1, 2016 at 7:03 pm
                  marta010
                  Participant

                    Deborah – over the past two years, my husband has had several bouts with Uveitis while on Tafinlar (he has not tolerated Mekinist).  He used Durozol steroid drops while the inflamation was at it's worst.  Once under control, he continues to use Prednisolone eye drops (1 drop each eye once a day) as a maintenance treatment.  His opthomologist has seen a few other cases of treament induced uveitis in other melanoma patients.  Not sure why you want to discontinue Prednisolone as this seems a very minor treatment to maintain your eye health, especially with your eye pressure increasing.  Do you have other concerns about the impact on your overall treatment?

                    Ann

                    • March 1, 2016 at 11:20 pm
                    ed williams
                    Participant

                      Hi Deborah, take a look at the post from 2/26/2016 by Snoopyinoc, Bubbles(Celeste) has a link to a presentation by 2 leading Oncologist where they talk about typical side effects of patients on Immunotherapies and targeted therapies. Hope it helps!!! Ed

                        • March 2, 2016 at 12:33 am
                        wasserd
                        Participant

                          Thank you!

                          • March 2, 2016 at 4:16 pm
                          Bubbles
                          Participant

                            Here's the link I think Ed was referring to:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                            Various occular side effects do occur with both immunotherapy and BRAFi….they can include uveitis, retinitis, corneal perforation, photosensitivity, problems with the optic nerve, etc.  Most are treated with steriods and a break in dosing.  With the BRAFi treatments….alternate dosing (like meds every third day or some such) and/or a dose reduction can be very helpful.

                            Hope this helps.  c

                            • March 2, 2016 at 4:16 pm
                            Bubbles
                            Participant

                              Here's the link I think Ed was referring to:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                              Various occular side effects do occur with both immunotherapy and BRAFi….they can include uveitis, retinitis, corneal perforation, photosensitivity, problems with the optic nerve, etc.  Most are treated with steriods and a break in dosing.  With the BRAFi treatments….alternate dosing (like meds every third day or some such) and/or a dose reduction can be very helpful.

                              Hope this helps.  c

                              • March 2, 2016 at 4:16 pm
                              Bubbles
                              Participant

                                Here's the link I think Ed was referring to:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                                Various occular side effects do occur with both immunotherapy and BRAFi….they can include uveitis, retinitis, corneal perforation, photosensitivity, problems with the optic nerve, etc.  Most are treated with steriods and a break in dosing.  With the BRAFi treatments….alternate dosing (like meds every third day or some such) and/or a dose reduction can be very helpful.

                                Hope this helps.  c

                                • March 2, 2016 at 12:33 am
                                wasserd
                                Participant

                                  Thank you!

                                  • March 2, 2016 at 12:33 am
                                  wasserd
                                  Participant

                                    Thank you!

                                  • March 1, 2016 at 11:20 pm
                                  ed williams
                                  Participant

                                    Hi Deborah, take a look at the post from 2/26/2016 by Snoopyinoc, Bubbles(Celeste) has a link to a presentation by 2 leading Oncologist where they talk about typical side effects of patients on Immunotherapies and targeted therapies. Hope it helps!!! Ed

                                    • March 1, 2016 at 11:20 pm
                                    ed williams
                                    Participant

                                      Hi Deborah, take a look at the post from 2/26/2016 by Snoopyinoc, Bubbles(Celeste) has a link to a presentation by 2 leading Oncologist where they talk about typical side effects of patients on Immunotherapies and targeted therapies. Hope it helps!!! Ed

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