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Vitiligo and pembro
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Vitiligo and pembro

› Forums › General Melanoma Community › Vitiligo and pembro

  • Post
    • December 5, 2015 at 4:55 pm
    Momofjake
    Participant

      Hi there!! 

      My son Jake is doing really great! Scans Tues to see if the keytruda is shrinking his mets even more. Last scan 3 mo ago showed tons of improvement. He has started getting a few skin rashes and he is tired. Nothing too hard. I just read an ASCO study saying they believe tumor reduction rate is a reflection of the rate of vitiligo. I didn't say that well….that your odds of vitiligo go up if keytruda is working. 

      Do any of you see this? Not that vitiligo isn't worth it:) But sadly at 18 it's another bummer after a lot of hard disappointment already. Overall, life is good!! So happy for the strides in treatment lately! Grateful!

      kerri–momofjake

    Viewing 11 reply threads
    • Replies
        • December 5, 2015 at 6:30 pm
        arthurjedi007
        Participant

          Yes from what I've heard vitiligo is a good sign the immune system is working good against the cancer.

          Artie

          • December 5, 2015 at 6:30 pm
          arthurjedi007
          Participant

            Yes from what I've heard vitiligo is a good sign the immune system is working good against the cancer.

            Artie

            • December 5, 2015 at 6:30 pm
            arthurjedi007
            Participant

              Yes from what I've heard vitiligo is a good sign the immune system is working good against the cancer.

              Artie

                • December 5, 2015 at 10:39 pm
                Momofjake
                Participant

                  How are you Artie?!?

                  • December 5, 2015 at 10:39 pm
                  Momofjake
                  Participant

                    How are you Artie?!?

                    • December 5, 2015 at 10:39 pm
                    Momofjake
                    Participant

                      How are you Artie?!?

                      • December 6, 2015 at 2:29 am
                      arthurjedi007
                      Participant

                        I'm not doing very good right now. Supposed to go to Houston next week. We shall see if I can make it.

                        Artie

                        • December 6, 2015 at 2:29 am
                        arthurjedi007
                        Participant

                          I'm not doing very good right now. Supposed to go to Houston next week. We shall see if I can make it.

                          Artie

                          • December 6, 2015 at 2:29 am
                          arthurjedi007
                          Participant

                            I'm not doing very good right now. Supposed to go to Houston next week. We shall see if I can make it.

                            Artie

                          • December 5, 2015 at 8:09 pm
                          Eileensulliv
                          Participant

                            Hi Kerri! I have read your posts in the past, and I just wanted to say that you and Jake are incredible! I don't have any experience with vitiligo, but I am so happy to hear of Jake's improvement! Best wishes to you both!

                            • December 5, 2015 at 8:09 pm
                            Eileensulliv
                            Participant

                              Hi Kerri! I have read your posts in the past, and I just wanted to say that you and Jake are incredible! I don't have any experience with vitiligo, but I am so happy to hear of Jake's improvement! Best wishes to you both!

                              • December 5, 2015 at 8:09 pm
                              Eileensulliv
                              Participant

                                Hi Kerri! I have read your posts in the past, and I just wanted to say that you and Jake are incredible! I don't have any experience with vitiligo, but I am so happy to hear of Jake's improvement! Best wishes to you both!

                                  • December 5, 2015 at 10:34 pm
                                  Momofjake
                                  Participant

                                    Thanks Eileen:) I guess I didn't realize how great our "normal" life(with all the problems) was until now!!! Hope you are having a good December!!

                                    • December 5, 2015 at 10:34 pm
                                    Momofjake
                                    Participant

                                      Thanks Eileen:) I guess I didn't realize how great our "normal" life(with all the problems) was until now!!! Hope you are having a good December!!

                                      • December 5, 2015 at 10:34 pm
                                      Momofjake
                                      Participant

                                        Thanks Eileen:) I guess I didn't realize how great our "normal" life(with all the problems) was until now!!! Hope you are having a good December!!

                                      • December 5, 2015 at 9:25 pm
                                      ed williams
                                      Participant

                                        Hi Kerri, I developed Vitiligo after several months on checkmate 67 trial of Ipi and Nivo. My oncologist said that there is a positive correlation of response to immunotherapies and the development of Vitiligo. My understanding is of all the possible side effects that one can get from Ipi or nivo, this is the one you want to develop. Wishing you and your son the best!!! Ed

                                        • December 5, 2015 at 9:25 pm
                                        ed williams
                                        Participant

                                          Hi Kerri, I developed Vitiligo after several months on checkmate 67 trial of Ipi and Nivo. My oncologist said that there is a positive correlation of response to immunotherapies and the development of Vitiligo. My understanding is of all the possible side effects that one can get from Ipi or nivo, this is the one you want to develop. Wishing you and your son the best!!! Ed

                                          • December 5, 2015 at 9:25 pm
                                          ed williams
                                          Participant

                                            Hi Kerri, I developed Vitiligo after several months on checkmate 67 trial of Ipi and Nivo. My oncologist said that there is a positive correlation of response to immunotherapies and the development of Vitiligo. My understanding is of all the possible side effects that one can get from Ipi or nivo, this is the one you want to develop. Wishing you and your son the best!!! Ed

                                              • December 5, 2015 at 10:37 pm
                                              Momofjake
                                              Participant

                                                Ed,

                                                 

                                                thanks so much! Good to hear what did docs say! So, I guess we need to embrace this one! Darn huge scars, bald side of his head(radiation),  crazy new hair(chemo), along w blue spots that "were" cancer and all the rest….but I will have to spin this one as LIVING!!!! 

                                                Take care!!!!

                                                • December 5, 2015 at 10:37 pm
                                                Momofjake
                                                Participant

                                                  Ed,

                                                   

                                                  thanks so much! Good to hear what did docs say! So, I guess we need to embrace this one! Darn huge scars, bald side of his head(radiation),  crazy new hair(chemo), along w blue spots that "were" cancer and all the rest….but I will have to spin this one as LIVING!!!! 

                                                  Take care!!!!

                                                  • December 5, 2015 at 10:37 pm
                                                  Momofjake
                                                  Participant

                                                    Ed,

                                                     

                                                    thanks so much! Good to hear what did docs say! So, I guess we need to embrace this one! Darn huge scars, bald side of his head(radiation),  crazy new hair(chemo), along w blue spots that "were" cancer and all the rest….but I will have to spin this one as LIVING!!!! 

                                                    Take care!!!!

                                                  • December 6, 2015 at 2:27 pm
                                                  Bubbles
                                                  Participant

                                                    Glad things are goong well so far! Yes, vitiligo can be a positive sign of response with all immunotherapies. Here is a link to several articles about it, with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html

                                                    I developed a good deal of vitiligo while on my nivo/Opdivo trial (there are pics) and even for a then  45 year old…50 now…it's not what you think of as beauty or your best look! On the other hand I'm still here! If it ever comes to it with your son…perhaps this will help:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/strength-and-beauty-chantelle-brown.html

                                                    Now that is a picture of strength and beauty! Hope that helps. Wishing you and yours my best! Celeste

                                                    • December 6, 2015 at 2:27 pm
                                                    Bubbles
                                                    Participant

                                                      Glad things are goong well so far! Yes, vitiligo can be a positive sign of response with all immunotherapies. Here is a link to several articles about it, with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html

                                                      I developed a good deal of vitiligo while on my nivo/Opdivo trial (there are pics) and even for a then  45 year old…50 now…it's not what you think of as beauty or your best look! On the other hand I'm still here! If it ever comes to it with your son…perhaps this will help:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/strength-and-beauty-chantelle-brown.html

                                                      Now that is a picture of strength and beauty! Hope that helps. Wishing you and yours my best! Celeste

                                                      • December 6, 2015 at 2:27 pm
                                                      Bubbles
                                                      Participant

                                                        Glad things are goong well so far! Yes, vitiligo can be a positive sign of response with all immunotherapies. Here is a link to several articles about it, with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html

                                                        I developed a good deal of vitiligo while on my nivo/Opdivo trial (there are pics) and even for a then  45 year old…50 now…it's not what you think of as beauty or your best look! On the other hand I'm still here! If it ever comes to it with your son…perhaps this will help:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/strength-and-beauty-chantelle-brown.html

                                                        Now that is a picture of strength and beauty! Hope that helps. Wishing you and yours my best! Celeste

                                                    Viewing 11 reply threads
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