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Sun sensitivity to Tafinlar and MEK
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Sun sensitivity to Tafinlar and MEK

› Forums › General Melanoma Community › Sun sensitivity to Tafinlar and MEK

  • Post
    • April 9, 2016 at 10:55 am
    Rita and Charles
    Participant

      We r on vacation and although covered adequately/spa 70 my husbands nausea has really derailed him. He wanted to see Caribbean waters as bucket list but his health has been all nausea. Anyone else suffer from this?  Thanks. 

    Viewing 5 reply threads
    • Replies
        • April 9, 2016 at 7:03 pm
        Polymath
        Participant

          Greetings R & C,

          Not sure this helps, but I encountered extraordinary, almost unimaginable photo-sensitivity to my first BRAF drug, Vemurafenib (Zelboraf).  Living in Hawaii, it was the worst 3-months of my life.  Then we switched to TAF/MEK combo which did not have the photo-sensitivity side-effect.  But rule number one on this board should be acknowledgement that almost everyone reacts differently to various drug therapies.  Hope this resolves itself as its no fun hiding from the sun constantly.

          Gary

          • April 9, 2016 at 7:03 pm
          Polymath
          Participant

            Greetings R & C,

            Not sure this helps, but I encountered extraordinary, almost unimaginable photo-sensitivity to my first BRAF drug, Vemurafenib (Zelboraf).  Living in Hawaii, it was the worst 3-months of my life.  Then we switched to TAF/MEK combo which did not have the photo-sensitivity side-effect.  But rule number one on this board should be acknowledgement that almost everyone reacts differently to various drug therapies.  Hope this resolves itself as its no fun hiding from the sun constantly.

            Gary

            • April 9, 2016 at 7:03 pm
            Polymath
            Participant

              Greetings R & C,

              Not sure this helps, but I encountered extraordinary, almost unimaginable photo-sensitivity to my first BRAF drug, Vemurafenib (Zelboraf).  Living in Hawaii, it was the worst 3-months of my life.  Then we switched to TAF/MEK combo which did not have the photo-sensitivity side-effect.  But rule number one on this board should be acknowledgement that almost everyone reacts differently to various drug therapies.  Hope this resolves itself as its no fun hiding from the sun constantly.

              Gary

              • April 10, 2016 at 1:13 pm
              Momofjake
              Participant

                Rita and Gary,

                My son Jake starts the Mek/Taf combo today. I am planning our summer vacay and was looking at a Mexico beach….he already hides from the sun like crazy, but I figured he would nap in the mid day and the house I want to rent is awesome w lots of covered patio and view…still, I don't know if he will be sick, sun sensitive, or just hate it. I am actually feeling kinda sad. Keytruda failed. So so many tumors everywhere. Now the BRAF that they say doesn't last long. Hoping he doesn't get too sick. He feels and looks so good right now. Man, they go thru SO much! So sorry your trip has been "cancery"!! Hoping for health for you guys❤️

                Kerri

                  • April 10, 2016 at 6:22 pm
                  Polymath
                  Participant

                    Hi Kerri,

                    There are a lot of folks on here rooting for Jake.  He's a trooper for sure, and hope he and Charles are like me, and do not have the photo-sensativity issues on TAF/MEK combo.  More importantly, we hope they are responders.  Even though the BRAF inhibitors seem to have a short shelf life, just knocking down the tumor load, even temporarily can add time, and hope.  Best to you all.  

                    Gary

                    • April 10, 2016 at 6:22 pm
                    Polymath
                    Participant

                      Hi Kerri,

                      There are a lot of folks on here rooting for Jake.  He's a trooper for sure, and hope he and Charles are like me, and do not have the photo-sensativity issues on TAF/MEK combo.  More importantly, we hope they are responders.  Even though the BRAF inhibitors seem to have a short shelf life, just knocking down the tumor load, even temporarily can add time, and hope.  Best to you all.  

                      Gary

                      • April 10, 2016 at 6:22 pm
                      Polymath
                      Participant

                        Hi Kerri,

                        There are a lot of folks on here rooting for Jake.  He's a trooper for sure, and hope he and Charles are like me, and do not have the photo-sensativity issues on TAF/MEK combo.  More importantly, we hope they are responders.  Even though the BRAF inhibitors seem to have a short shelf life, just knocking down the tumor load, even temporarily can add time, and hope.  Best to you all.  

                        Gary

                        • April 11, 2016 at 11:24 am
                        Rita and Charles
                        Participant

                          Keri, he is starting to feel a lot better. We float for a while in Caribbean waters slathered in spf beach defense the snooze under umbrellas. The house we r in has great hammock , covered porches and infinity pool looking over ocean. We spent so much time here years ago. To get away! Out of the normal house where cancer is evident w pills and books. Escape. Listen to music. Eat if he can. Be lazy. See sunrise and sunset. This 7 day escape has been worth it to him. His nausea has gotten better, not as chancery now. It could have been the grueling travel to get here. I think of u and your son often, praying. 

                           

                          Charles has been on the medication now for 7 months – next scan when we get back. 5 days of happy island time – do as many bucket lists he has. Good luck let me know how it goes????

                           

                          rita

                          • April 11, 2016 at 11:24 am
                          Rita and Charles
                          Participant

                            Keri, he is starting to feel a lot better. We float for a while in Caribbean waters slathered in spf beach defense the snooze under umbrellas. The house we r in has great hammock , covered porches and infinity pool looking over ocean. We spent so much time here years ago. To get away! Out of the normal house where cancer is evident w pills and books. Escape. Listen to music. Eat if he can. Be lazy. See sunrise and sunset. This 7 day escape has been worth it to him. His nausea has gotten better, not as chancery now. It could have been the grueling travel to get here. I think of u and your son often, praying. 

                             

                            Charles has been on the medication now for 7 months – next scan when we get back. 5 days of happy island time – do as many bucket lists he has. Good luck let me know how it goes????

                             

                            rita

                            • April 11, 2016 at 11:24 am
                            Rita and Charles
                            Participant

                              Keri, he is starting to feel a lot better. We float for a while in Caribbean waters slathered in spf beach defense the snooze under umbrellas. The house we r in has great hammock , covered porches and infinity pool looking over ocean. We spent so much time here years ago. To get away! Out of the normal house where cancer is evident w pills and books. Escape. Listen to music. Eat if he can. Be lazy. See sunrise and sunset. This 7 day escape has been worth it to him. His nausea has gotten better, not as chancery now. It could have been the grueling travel to get here. I think of u and your son often, praying. 

                               

                              Charles has been on the medication now for 7 months – next scan when we get back. 5 days of happy island time – do as many bucket lists he has. Good luck let me know how it goes????

                               

                              rita

                            • April 10, 2016 at 1:13 pm
                            Momofjake
                            Participant

                              Rita and Gary,

                              My son Jake starts the Mek/Taf combo today. I am planning our summer vacay and was looking at a Mexico beach….he already hides from the sun like crazy, but I figured he would nap in the mid day and the house I want to rent is awesome w lots of covered patio and view…still, I don't know if he will be sick, sun sensitive, or just hate it. I am actually feeling kinda sad. Keytruda failed. So so many tumors everywhere. Now the BRAF that they say doesn't last long. Hoping he doesn't get too sick. He feels and looks so good right now. Man, they go thru SO much! So sorry your trip has been "cancery"!! Hoping for health for you guys❤️

                              Kerri

                              • April 10, 2016 at 1:13 pm
                              Momofjake
                              Participant

                                Rita and Gary,

                                My son Jake starts the Mek/Taf combo today. I am planning our summer vacay and was looking at a Mexico beach….he already hides from the sun like crazy, but I figured he would nap in the mid day and the house I want to rent is awesome w lots of covered patio and view…still, I don't know if he will be sick, sun sensitive, or just hate it. I am actually feeling kinda sad. Keytruda failed. So so many tumors everywhere. Now the BRAF that they say doesn't last long. Hoping he doesn't get too sick. He feels and looks so good right now. Man, they go thru SO much! So sorry your trip has been "cancery"!! Hoping for health for you guys❤️

                                Kerri

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