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Wondering if I am getting a response from ipi
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Wondering if I am getting a response from ipi

› Forums › General Melanoma Community › Wondering if I am getting a response from ipi

  • Post
    • May 27, 2012 at 4:44 pm
    yoopergirl
    Participant

      I am due to see my oncoligist on June 4th after my cat scan to see if I am having a response to the Yervoy or not, then will discuss treatment. I went the other day to have my hair done and eye brows and my beautician said some of the hair on my brows are white, I said are you sure they are not grey and she said they are white!! I can't see that since I wear glasses and the brows are kinda hidden, I thought I saw on this board that it would be a good sign  that  the ipi was working although my tumors are still big so I guess I won't really know until we discuss my scan.

      I am due to see my oncoligist on June 4th after my cat scan to see if I am having a response to the Yervoy or not, then will discuss treatment. I went the other day to have my hair done and eye brows and my beautician said some of the hair on my brows are white, I said are you sure they are not grey and she said they are white!! I can't see that since I wear glasses and the brows are kinda hidden, I thought I saw on this board that it would be a good sign  that  the ipi was working although my tumors are still big so I guess I won't really know until we discuss my scan. Has anyone had this happen to them? Thanks.

    Viewing 11 reply threads
    • Replies
        • May 27, 2012 at 7:14 pm
        WendyR3
        Participant

          I don't know from personal experience, but I've heard that's a good sign.  Good luck!

          • May 27, 2012 at 7:14 pm
          WendyR3
          Participant

            I don't know from personal experience, but I've heard that's a good sign.  Good luck!

            • May 27, 2012 at 7:14 pm
            WendyR3
            Participant

              I don't know from personal experience, but I've heard that's a good sign.  Good luck!

              • May 27, 2012 at 7:33 pm
              Angela C
              Participant

                Hi there. I also have heard that this can be a good sign. I experienced the same thing while on Yervoy. I had my last dose in November of last year and I still have a few white eyebrow hairs. Once they went white, they stayed that way. I moved on from Yervoy to TIL because my tumors were still growing. However, while on Yervoy, I did have a few spots in my lungs shrink slightly after about a year of being stable. So, maybe I was a partial responder to Yervoy?

                I hope that your white hairs mean you are at least going to have a partial response! Some people, who often times are complete responders, will have their eyebrows turn white and then it moves on to the crown of their head and eventually it all turns white. So, here's hoping that you are at the beginning stages of going all white! It would be a small price to pay for NED!!

                • May 27, 2012 at 7:33 pm
                Angela C
                Participant

                  Hi there. I also have heard that this can be a good sign. I experienced the same thing while on Yervoy. I had my last dose in November of last year and I still have a few white eyebrow hairs. Once they went white, they stayed that way. I moved on from Yervoy to TIL because my tumors were still growing. However, while on Yervoy, I did have a few spots in my lungs shrink slightly after about a year of being stable. So, maybe I was a partial responder to Yervoy?

                  I hope that your white hairs mean you are at least going to have a partial response! Some people, who often times are complete responders, will have their eyebrows turn white and then it moves on to the crown of their head and eventually it all turns white. So, here's hoping that you are at the beginning stages of going all white! It would be a small price to pay for NED!!

                  • May 27, 2012 at 7:33 pm
                  Angela C
                  Participant

                    Hi there. I also have heard that this can be a good sign. I experienced the same thing while on Yervoy. I had my last dose in November of last year and I still have a few white eyebrow hairs. Once they went white, they stayed that way. I moved on from Yervoy to TIL because my tumors were still growing. However, while on Yervoy, I did have a few spots in my lungs shrink slightly after about a year of being stable. So, maybe I was a partial responder to Yervoy?

                    I hope that your white hairs mean you are at least going to have a partial response! Some people, who often times are complete responders, will have their eyebrows turn white and then it moves on to the crown of their head and eventually it all turns white. So, here's hoping that you are at the beginning stages of going all white! It would be a small price to pay for NED!!

                    • May 27, 2012 at 10:10 pm
                    Linny
                    Participant

                      Looks like a good sign, Yoopergirl: http://www.reuters.com/article/2010/06/06/us-cancer-melanoma-hair-idUSTRE6542SF20100606

                      …"I'm pretty confident to say if patients start to develop depigmentation after six to 12 months, they are going to have a durable response."

                      Pavlick said that when patients were asked about their hair turning white, their stories were all the same.

                      "It always starts in the eyebrows. It goes from the eyebrows to the crown of the hair, assuming they have hair there. If they don't, it usually starts with their sideburns," she said. "To me it's a healing sign."…

                      Only your doctor will be able to determine if it's a complete or partial response. But you're definitely moving in the right direction with getting the white eyebrows.

                        • May 28, 2012 at 2:04 pm
                        yoopergirl
                        Participant

                          Thanks for the link, it was interesting and am hoping that it is a good sign for me but like I said I still have some large tumors on my arm and my last infusion was feb 20th so praying the ipi is doing its stuff.

                          • May 28, 2012 at 2:04 pm
                          yoopergirl
                          Participant

                            Thanks for the link, it was interesting and am hoping that it is a good sign for me but like I said I still have some large tumors on my arm and my last infusion was feb 20th so praying the ipi is doing its stuff.

                            • May 28, 2012 at 2:04 pm
                            yoopergirl
                            Participant

                              Thanks for the link, it was interesting and am hoping that it is a good sign for me but like I said I still have some large tumors on my arm and my last infusion was feb 20th so praying the ipi is doing its stuff.

                            • May 27, 2012 at 10:10 pm
                            Linny
                            Participant

                              Looks like a good sign, Yoopergirl: http://www.reuters.com/article/2010/06/06/us-cancer-melanoma-hair-idUSTRE6542SF20100606

                              …"I'm pretty confident to say if patients start to develop depigmentation after six to 12 months, they are going to have a durable response."

                              Pavlick said that when patients were asked about their hair turning white, their stories were all the same.

                              "It always starts in the eyebrows. It goes from the eyebrows to the crown of the hair, assuming they have hair there. If they don't, it usually starts with their sideburns," she said. "To me it's a healing sign."…

                              Only your doctor will be able to determine if it's a complete or partial response. But you're definitely moving in the right direction with getting the white eyebrows.

                              • May 27, 2012 at 10:10 pm
                              Linny
                              Participant

                                Looks like a good sign, Yoopergirl: http://www.reuters.com/article/2010/06/06/us-cancer-melanoma-hair-idUSTRE6542SF20100606

                                …"I'm pretty confident to say if patients start to develop depigmentation after six to 12 months, they are going to have a durable response."

                                Pavlick said that when patients were asked about their hair turning white, their stories were all the same.

                                "It always starts in the eyebrows. It goes from the eyebrows to the crown of the hair, assuming they have hair there. If they don't, it usually starts with their sideburns," she said. "To me it's a healing sign."…

                                Only your doctor will be able to determine if it's a complete or partial response. But you're definitely moving in the right direction with getting the white eyebrows.

                                • May 28, 2012 at 1:07 pm
                                Gene_S
                                Participant

                                  My husband got the white eyebrows, lost pigmentation in the skin in most spots down to the chest, and his mustache area except for in the center under the nose are white.  He has been on Ipi (Yervoy since March 2011) and his Dr. said this is a good sign since most of his lesions are gone and just waiting for the last one to go.

                                  Judy (loving wife and caregiver of Gene)

                                  • May 28, 2012 at 1:07 pm
                                  Gene_S
                                  Participant

                                    My husband got the white eyebrows, lost pigmentation in the skin in most spots down to the chest, and his mustache area except for in the center under the nose are white.  He has been on Ipi (Yervoy since March 2011) and his Dr. said this is a good sign since most of his lesions are gone and just waiting for the last one to go.

                                    Judy (loving wife and caregiver of Gene)

                                    • May 28, 2012 at 1:07 pm
                                    Gene_S
                                    Participant

                                      My husband got the white eyebrows, lost pigmentation in the skin in most spots down to the chest, and his mustache area except for in the center under the nose are white.  He has been on Ipi (Yervoy since March 2011) and his Dr. said this is a good sign since most of his lesions are gone and just waiting for the last one to go.

                                      Judy (loving wife and caregiver of Gene)

                                        • May 28, 2012 at 2:06 pm
                                        yoopergirl
                                        Participant

                                          That sounds like good news to me, does he continue to take the Yervoy? I can't have  my 4th one since I had bad side effects.

                                          • May 28, 2012 at 2:06 pm
                                          yoopergirl
                                          Participant

                                            That sounds like good news to me, does he continue to take the Yervoy? I can't have  my 4th one since I had bad side effects.

                                            • May 28, 2012 at 4:00 pm
                                            Gene_S
                                            Participant

                                              Yes after the initial 4 doses in 12 weeks he gets another every 12 weeks.  He originally started Mar 3, 2011.

                                              • May 28, 2012 at 4:00 pm
                                              Gene_S
                                              Participant

                                                Yes after the initial 4 doses in 12 weeks he gets another every 12 weeks.  He originally started Mar 3, 2011.

                                                • May 28, 2012 at 4:00 pm
                                                Gene_S
                                                Participant

                                                  Yes after the initial 4 doses in 12 weeks he gets another every 12 weeks.  He originally started Mar 3, 2011.

                                                  • May 28, 2012 at 2:06 pm
                                                  yoopergirl
                                                  Participant

                                                    That sounds like good news to me, does he continue to take the Yervoy? I can't have  my 4th one since I had bad side effects.

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