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ipi/BRAF = hair loss
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ipi/BRAF = hair loss

› Forums › General Melanoma Community › ipi/BRAF = hair loss

  • Post
    • October 19, 2011 at 2:09 pm
    TracyLee
    Participant

      Hi y'all,

      Anyone else done ipi first, then BRAF immediately following?

      My hair is really thinning. I've called the BRAF helpline, but they can't say if it will stop thinning or I'll lose it all?

      I'm responding terrifically, so I'll certainly deal with the hair issue. I work full time, feel great, so who am I to complain?!

      This Friday is squish-o-gram (mammogram for you guys) for lump in breast. Monday is CT scans, follow up from BRAF and ipi.

      Hi y'all,

      Anyone else done ipi first, then BRAF immediately following?

      My hair is really thinning. I've called the BRAF helpline, but they can't say if it will stop thinning or I'll lose it all?

      I'm responding terrifically, so I'll certainly deal with the hair issue. I work full time, feel great, so who am I to complain?!

      This Friday is squish-o-gram (mammogram for you guys) for lump in breast. Monday is CT scans, follow up from BRAF and ipi.

      Helpline says I'm the first to report breast lump, only the second to have fairly severe ereythema nodosums (painful lumps, come and go). Yes, I'm SPECIAL, I always tell my husband that.  🙂

      Soooooo happy for the positive posts, lifting everyone lurking or posting, whether in the valley or on the mountaintop, in prayer.

      TracyLee

      Stage IV

    Viewing 17 reply threads
    • Replies
        • October 19, 2011 at 4:06 pm
        mombase
        Participant

          Hi Tracy Lee,

          I haven't done the Zelboraf yet, but may have to if the Ipi doesn't work. But after my brain surgery, I went to Wally WOrld and bought tons of the different color and patterned bandanas, which are now my friends!!

          Ouch, I hate mammograms! I have to have them often, too, because my fibrous tissue shows up as lumps. May your lump be a fibrous tissue or cyst, as well!

          Cristy, Stage IV

          • October 19, 2011 at 4:06 pm
          mombase
          Participant

            Hi Tracy Lee,

            I haven't done the Zelboraf yet, but may have to if the Ipi doesn't work. But after my brain surgery, I went to Wally WOrld and bought tons of the different color and patterned bandanas, which are now my friends!!

            Ouch, I hate mammograms! I have to have them often, too, because my fibrous tissue shows up as lumps. May your lump be a fibrous tissue or cyst, as well!

            Cristy, Stage IV

            • October 19, 2011 at 4:06 pm
            mombase
            Participant

              Hi Tracy Lee,

              I haven't done the Zelboraf yet, but may have to if the Ipi doesn't work. But after my brain surgery, I went to Wally WOrld and bought tons of the different color and patterned bandanas, which are now my friends!!

              Ouch, I hate mammograms! I have to have them often, too, because my fibrous tissue shows up as lumps. May your lump be a fibrous tissue or cyst, as well!

              Cristy, Stage IV

              • October 19, 2011 at 4:42 pm
              boot2aboot
              Participant

                NO Tracy you are not special…i am on a zelboraf holiday for a week due to severe side effects…i have hair loss and wear a scarf…i counted 63 nodusms all over my body…some as big as a baseball and i also have breast lump…along with severe diarrhea, fevers and nausea…you might be able to reduce dose or take a drug holiday to try and reset your body…or take steroids…

                • October 19, 2011 at 4:42 pm
                boot2aboot
                Participant

                  NO Tracy you are not special…i am on a zelboraf holiday for a week due to severe side effects…i have hair loss and wear a scarf…i counted 63 nodusms all over my body…some as big as a baseball and i also have breast lump…along with severe diarrhea, fevers and nausea…you might be able to reduce dose or take a drug holiday to try and reset your body…or take steroids…

                  • October 19, 2011 at 4:42 pm
                  boot2aboot
                  Participant

                    NO Tracy you are not special…i am on a zelboraf holiday for a week due to severe side effects…i have hair loss and wear a scarf…i counted 63 nodusms all over my body…some as big as a baseball and i also have breast lump…along with severe diarrhea, fevers and nausea…you might be able to reduce dose or take a drug holiday to try and reset your body…or take steroids…

                    • October 19, 2011 at 9:58 pm
                    daughter in distress
                    Participant

                      TracyLee:
                      So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                      • October 19, 2011 at 9:58 pm
                      daughter in distress
                      Participant

                        TracyLee:
                        So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                        • October 19, 2011 at 9:58 pm
                        daughter in distress
                        Participant

                          TracyLee:
                          So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                          • October 19, 2011 at 9:58 pm
                          daughter in distress
                          Participant

                            TracyLee:
                            So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                            • October 19, 2011 at 9:58 pm
                            daughter in distress
                            Participant

                              TracyLee:
                              So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                              • October 19, 2011 at 9:58 pm
                              daughter in distress
                              Participant

                                TracyLee:
                                So happy to hear some positive news for you.  My thoughts and prayers continue to be with you.  Thank you so much for  your thoughts and information on my dad.  He has decided to not do radiation and is going to "wait and see".  I appreciate you reaching out to me with all you are going through.   Julie

                                • October 19, 2011 at 10:07 pm
                                triciad
                                Participant

                                  Tracy Lee –

                                  So happy to hear your positive post.  I'm keeping my fingers crossed for complete response.  Good luck with your mammogram!

                                  Tricia

                                  • October 19, 2011 at 10:07 pm
                                  triciad
                                  Participant

                                    Tracy Lee –

                                    So happy to hear your positive post.  I'm keeping my fingers crossed for complete response.  Good luck with your mammogram!

                                    Tricia

                                    • October 19, 2011 at 10:07 pm
                                    triciad
                                    Participant

                                      Tracy Lee –

                                      So happy to hear your positive post.  I'm keeping my fingers crossed for complete response.  Good luck with your mammogram!

                                      Tricia

                                      • October 19, 2011 at 11:47 pm
                                      Richard_K
                                      Participant

                                        TracyLee

                                        I never did do ipi but have done, and am still on Zelboraf.  It's hard to tell if I lost much (or any) hair on my head as it was quite thin to begin with and was "leaving" even before melanoma.  But…..I did loose all the hair on my legs and arm pits! For people who might experience this, look at is as a small benefit. lol

                                        Dick

                                        • October 19, 2011 at 11:47 pm
                                        Richard_K
                                        Participant

                                          TracyLee

                                          I never did do ipi but have done, and am still on Zelboraf.  It's hard to tell if I lost much (or any) hair on my head as it was quite thin to begin with and was "leaving" even before melanoma.  But…..I did loose all the hair on my legs and arm pits! For people who might experience this, look at is as a small benefit. lol

                                          Dick

                                          • October 19, 2011 at 11:47 pm
                                          Richard_K
                                          Participant

                                            TracyLee

                                            I never did do ipi but have done, and am still on Zelboraf.  It's hard to tell if I lost much (or any) hair on my head as it was quite thin to begin with and was "leaving" even before melanoma.  But…..I did loose all the hair on my legs and arm pits! For people who might experience this, look at is as a small benefit. lol

                                            Dick

                                        Viewing 17 reply threads
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