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Zelboraf patients…any sunscreen recommendations?
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Zelboraf patients…any sunscreen recommendations?

› Forums › General Melanoma Community › Zelboraf patients…any sunscreen recommendations?

  • Post
    • June 23, 2012 at 4:38 am
    Fighting Mama
    Participant

      The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently…I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

      The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently…I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

      What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing…but I refuse to stay inside and not enjoy summer time with my family!

      I would love to hear from others going through this.

      Best,

      Amy

    Viewing 5 reply threads
    • Replies
        • June 24, 2012 at 3:26 am
        Bruce Davis
        Participant
          I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.

          Bruce

            • June 24, 2012 at 2:29 pm
            Richard_K
            Participant

               

              Bruce

              For what it’s worth, I’ve been on Zelboraf for some 28 months and I still manage to miss some area. (lol)

              Dick

              Amy

              • June 24, 2012 at 2:29 pm
              Richard_K
              Participant

                 

                Bruce

                For what it’s worth, I’ve been on Zelboraf for some 28 months and I still manage to miss some area. (lol)

                Dick

                Amy

                • June 24, 2012 at 2:29 pm
                Richard_K
                Participant

                   

                  Bruce

                  For what it’s worth, I’ve been on Zelboraf for some 28 months and I still manage to miss some area. (lol)

                  Dick

                  Amy

                • June 24, 2012 at 3:26 am
                Bruce Davis
                Participant
                  I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.

                  Bruce

                  • June 24, 2012 at 3:26 am
                  Bruce Davis
                  Participant
                    I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.

                    Bruce

                    • June 24, 2012 at 2:28 pm
                    Richard_K
                    Participant

                       

                      Amy

                      So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects.  It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.

                      In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use.  It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor.   Don’t forget, it takes some time for the chemicals to establish and start the protection.  If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.

                      Dick

                        • June 25, 2012 at 12:51 pm
                        Laurie from maine
                        Participant

                          Hi,

                          I remember how bad it was when I was on zelboraf.  My lips were a big one for me, kepts lip sunblock with me all the time.    I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha).   BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade.  I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much.  Good luck!

                          laurie from maine

                          • June 25, 2012 at 12:51 pm
                          Laurie from maine
                          Participant

                            Hi,

                            I remember how bad it was when I was on zelboraf.  My lips were a big one for me, kepts lip sunblock with me all the time.    I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha).   BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade.  I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much.  Good luck!

                            laurie from maine

                            • June 25, 2012 at 12:51 pm
                            Laurie from maine
                            Participant

                              Hi,

                              I remember how bad it was when I was on zelboraf.  My lips were a big one for me, kepts lip sunblock with me all the time.    I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha).   BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade.  I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much.  Good luck!

                              laurie from maine

                              • June 27, 2012 at 3:04 am
                              H555
                              Participant

                                Dick – i'm 3 weeks away from a trip to Kenya to visit our son in the Peace Corps. I'd love to find out what you recommend plz. thank you.

                                • June 27, 2012 at 3:04 am
                                H555
                                Participant

                                  Dick – i'm 3 weeks away from a trip to Kenya to visit our son in the Peace Corps. I'd love to find out what you recommend plz. thank you.

                                  • June 27, 2012 at 10:37 am
                                  Richard_K
                                  Participant

                                    Just sent to you via e-mail.  Hope it works for you also and you have a great trip.

                                    Dick

                                    • June 27, 2012 at 10:37 am
                                    Richard_K
                                    Participant

                                      Just sent to you via e-mail.  Hope it works for you also and you have a great trip.

                                      Dick

                                      • June 27, 2012 at 10:37 am
                                      Richard_K
                                      Participant

                                        Just sent to you via e-mail.  Hope it works for you also and you have a great trip.

                                        Dick

                                        • June 27, 2012 at 3:04 am
                                        H555
                                        Participant

                                          Dick – i'm 3 weeks away from a trip to Kenya to visit our son in the Peace Corps. I'd love to find out what you recommend plz. thank you.

                                          • June 27, 2012 at 3:21 pm
                                          Cindy33
                                          Participant

                                            Hi,

                                            I would like to know the name of the sunscreen. If possible an email would be great. Thanks so much and best wishes to you all.

                                            Cindh

                                            • June 27, 2012 at 3:21 pm
                                            Cindy33
                                            Participant

                                              Hi,

                                              I would like to know the name of the sunscreen. If possible an email would be great. Thanks so much and best wishes to you all.

                                              Cindh

                                              • June 27, 2012 at 4:26 pm
                                              Richard_K
                                              Participant

                                                Cindy

                                                Just sent.

                                                Dick

                                                • June 27, 2012 at 4:26 pm
                                                Richard_K
                                                Participant

                                                  Cindy

                                                  Just sent.

                                                  Dick

                                                  • June 27, 2012 at 9:56 pm
                                                  Janner
                                                  Participant

                                                    You know, posting the name would be kinder than sending emails because other lurkers could learn from your experience, too.  I've learned over the years that there are many more lurkers than posters on this site.

                                                    • June 27, 2012 at 9:56 pm
                                                    Janner
                                                    Participant

                                                      You know, posting the name would be kinder than sending emails because other lurkers could learn from your experience, too.  I've learned over the years that there are many more lurkers than posters on this site.

                                                      • June 27, 2012 at 10:31 pm
                                                      Richard_K
                                                      Participant

                                                         

                                                        Janner

                                                        Good point, so here goes.  The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55.  Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.

                                                        From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.

                                                        Dick

                                                        • June 27, 2012 at 10:31 pm
                                                        Richard_K
                                                        Participant

                                                           

                                                          Janner

                                                          Good point, so here goes.  The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55.  Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.

                                                          From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.

                                                          Dick

                                                          • June 27, 2012 at 10:34 pm
                                                          Richard_K
                                                          Participant

                                                            No idea what happened to this post.  The product is "Aveeno", "Continuous Protection Sunblock Lotion", SPF 55.  Hope this one turns out better.

                                                            Dick

                                                            • June 27, 2012 at 10:34 pm
                                                            Richard_K
                                                            Participant

                                                              No idea what happened to this post.  The product is "Aveeno", "Continuous Protection Sunblock Lotion", SPF 55.  Hope this one turns out better.

                                                              Dick

                                                              • June 27, 2012 at 10:34 pm
                                                              Richard_K
                                                              Participant

                                                                No idea what happened to this post.  The product is "Aveeno", "Continuous Protection Sunblock Lotion", SPF 55.  Hope this one turns out better.

                                                                Dick

                                                                • June 27, 2012 at 10:31 pm
                                                                Richard_K
                                                                Participant

                                                                   

                                                                  Janner

                                                                  Good point, so here goes.  The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55.  Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.

                                                                  From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.

                                                                  Dick

                                                                  • June 27, 2012 at 9:56 pm
                                                                  Janner
                                                                  Participant

                                                                    You know, posting the name would be kinder than sending emails because other lurkers could learn from your experience, too.  I've learned over the years that there are many more lurkers than posters on this site.

                                                                    • June 27, 2012 at 4:26 pm
                                                                    Richard_K
                                                                    Participant

                                                                      Cindy

                                                                      Just sent.

                                                                      Dick

                                                                      • June 27, 2012 at 3:21 pm
                                                                      Cindy33
                                                                      Participant

                                                                        Hi,

                                                                        I would like to know the name of the sunscreen. If possible an email would be great. Thanks so much and best wishes to you all.

                                                                        Cindh

                                                                      • June 24, 2012 at 2:28 pm
                                                                      Richard_K
                                                                      Participant

                                                                         

                                                                        Amy

                                                                        So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects.  It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.

                                                                        In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use.  It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor.   Don’t forget, it takes some time for the chemicals to establish and start the protection.  If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.

                                                                        Dick

                                                                        • June 24, 2012 at 2:28 pm
                                                                        Richard_K
                                                                        Participant

                                                                           

                                                                          Amy

                                                                          So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects.  It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.

                                                                          In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use.  It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor.   Don’t forget, it takes some time for the chemicals to establish and start the protection.  If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.

                                                                          Dick

                                                                      Viewing 5 reply threads
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