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Eileen L

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      Eileen L
      Participant

        Very sad. Thanks for posting this Charlie.

        Warmly,

        Eileen L

        SF, CA

        Stage IV six year survivor!

        Eileen L
        Participant

          Very sad. Thanks for posting this Charlie.

          Warmly,

          Eileen L

          SF, CA

          Stage IV six year survivor!

          Eileen L
          Participant

            Very sad. Thanks for posting this Charlie.

            Warmly,

            Eileen L

            SF, CA

            Stage IV six year survivor!

            Eileen L
            Participant

              Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

              I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

              Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

              Eileen L

               

              Eileen L
              Participant

                Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

                I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

                Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

                Eileen L

                 

                Eileen L
                Participant

                  Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

                  I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

                  Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

                  Eileen L

                   

                  Eileen L
                  Participant

                    Thanks Tim. I appreciate your inquiries on my behalf!

                    Eileen

                    Eileen L
                    Participant

                      Thanks Tim. I appreciate your inquiries on my behalf!

                      Eileen

                      Eileen L
                      Participant

                        Thanks Tim. I appreciate your inquiries on my behalf!

                        Eileen

                        Eileen L
                        Participant

                          Thanks for your good wishes. I am fortunate in that I am at University of California San Francisco,which has both a Melanoma Center and a Breast Care Center!

                          Eileen

                          Eileen L
                          Participant

                            Thanks for your good wishes. I am fortunate in that I am at University of California San Francisco,which has both a Melanoma Center and a Breast Care Center!

                            Eileen

                            Eileen L
                            Participant

                              Thanks for your good wishes. I am fortunate in that I am at University of California San Francisco,which has both a Melanoma Center and a Breast Care Center!

                              Eileen

                              Eileen L
                              Participant

                                Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                Eileen L

                                Eileen L
                                Participant

                                  Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                  Eileen L

                                  Eileen L
                                  Participant

                                    Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                    Eileen L

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