The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Very sun sensitive; BRAF/MEK trial 28 months stage IV

Forums General Melanoma Community Very sun sensitive; BRAF/MEK trial 28 months stage IV

  • Post
    I love to ride my bike and hike…again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn’t happen before to this extent.

    I love to ride my bike and hike…again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn’t happen before to this extent.

Viewing 5 reply threads
  • Replies
      Brendan
      Participant
        Hi John,

        I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.

        Brendan

        Brendan
        Participant
          Hi John,

          I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.

          Brendan

            Brendan
            Participant

              John,

              I just read my post again.  I wrote it after losing a diaper battle with a cranky toddler.  I hope it didn't come off like I was blaming you.  I was just trying to relay some advice that helped me.

              Good luck to you.

              Brendan

               

              Brendan
              Participant

                John,

                I just read my post again.  I wrote it after losing a diaper battle with a cranky toddler.  I hope it didn't come off like I was blaming you.  I was just trying to relay some advice that helped me.

                Good luck to you.

                Brendan

                 

                Brendan
                Participant

                  John,

                  I just read my post again.  I wrote it after losing a diaper battle with a cranky toddler.  I hope it didn't come off like I was blaming you.  I was just trying to relay some advice that helped me.

                  Good luck to you.

                  Brendan

                   

                Brendan
                Participant
                  Hi John,

                  I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.

                  Brendan

                  Harry in Fair Oaks
                  Participant

                    Hi John,

                    Great to hear from you!  I'm now on my 24th month on the program and all is good so far.  Last month I was told the protocol for us old timers was modified to scans every 12 weeks.  I'm sure you were told the same.  That 8 week schedule was getting old….

                    I feel for you re the sun sensitivity.  I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate),  but there is alot more atmosphere between the sun and me where I live.  We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.

                    Best wishes,

                    Harry

                      NYKaren
                      Participant
                        Hi John,
                        Is photosensitivity a side effect with your BRAF drug as it is with Zel?
                        Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
                        Take care of yourself,
                        Karen
                        NYKaren
                        Participant
                          Hi John,
                          Is photosensitivity a side effect with your BRAF drug as it is with Zel?
                          Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
                          Take care of yourself,
                          Karen
                          NYKaren
                          Participant
                            Hi John,
                            Is photosensitivity a side effect with your BRAF drug as it is with Zel?
                            Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
                            Take care of yourself,
                            Karen
                            NYKaren
                            Participant
                              Or maybe I just don’t have them YET.
                              NYKaren
                              Participant
                                Or maybe I just don’t have them YET.
                                mbaelaporte
                                Participant

                                  I don't know about the MEK component but  w /  BRAF  I had to be careful from the reflection off cars /  true shade only prevention

                                  I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn;  the burn was more intense & on fire than I had ever experienced before

                                  and some anecdotal :  I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )

                                  the disease did a workarond & was back within say 8 mos. of starting the BRAF

                                  mbaelaporte
                                  Participant

                                    I don't know about the MEK component but  w /  BRAF  I had to be careful from the reflection off cars /  true shade only prevention

                                    I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn;  the burn was more intense & on fire than I had ever experienced before

                                    and some anecdotal :  I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )

                                    the disease did a workarond & was back within say 8 mos. of starting the BRAF

                                    mbaelaporte
                                    Participant

                                      I don't know about the MEK component but  w /  BRAF  I had to be careful from the reflection off cars /  true shade only prevention

                                      I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn;  the burn was more intense & on fire than I had ever experienced before

                                      and some anecdotal :  I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )

                                      the disease did a workarond & was back within say 8 mos. of starting the BRAF

                                      NYKaren
                                      Participant
                                        Or maybe I just don’t have them YET.
                                      Harry in Fair Oaks
                                      Participant

                                        Hi John,

                                        Great to hear from you!  I'm now on my 24th month on the program and all is good so far.  Last month I was told the protocol for us old timers was modified to scans every 12 weeks.  I'm sure you were told the same.  That 8 week schedule was getting old….

                                        I feel for you re the sun sensitivity.  I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate),  but there is alot more atmosphere between the sun and me where I live.  We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.

                                        Best wishes,

                                        Harry

                                        Harry in Fair Oaks
                                        Participant

                                          Hi John,

                                          Great to hear from you!  I'm now on my 24th month on the program and all is good so far.  Last month I was told the protocol for us old timers was modified to scans every 12 weeks.  I'm sure you were told the same.  That 8 week schedule was getting old….

                                          I feel for you re the sun sensitivity.  I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate),  but there is alot more atmosphere between the sun and me where I live.  We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.

                                          Best wishes,

                                          Harry

                                      Viewing 5 reply threads
                                      • You must be logged in to reply to this topic.
                                      About the MRF Patient Forum

                                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                      Popular Topics