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Scalp melanoma
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Scalp melanoma

› Forums › General Melanoma Community › Scalp melanoma

  • Post
    • December 16, 2014 at 3:49 am
    Teej
    Participant

      Hi everyone,

      My name is TJ and I'm 28 and was recently diagnosed with Stage Ib malignant melanoma on the scalp, which is typically found in men with an average age of around 60. This website has been incredibly helpful for me hearing the experiences of others. Are there any other folks out there who were dianosed with a primary on their scalp at such a young age? I would love to hear any experiences with scalp melanoma that you may have.

      Thanks!

      TJ

    Viewing 5 reply threads
    • Replies
        • December 16, 2014 at 10:21 pm
        O_O
        Participant

          Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

           

          Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

           

          Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

           

          Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

          Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

           

          Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

            • December 18, 2014 at 5:14 am
            Teej
            Participant

              Thank you for your reply and glad to hear your surgeries went well! When you say it came back each time after three surgeries…was it local recurrence, or did it involve the nodes? I'm still quite new to this and trying to learn as much as possible. Wishing you the best as well, TJ

              • December 18, 2014 at 5:14 am
              Teej
              Participant

                Thank you for your reply and glad to hear your surgeries went well! When you say it came back each time after three surgeries…was it local recurrence, or did it involve the nodes? I'm still quite new to this and trying to learn as much as possible. Wishing you the best as well, TJ

                • December 18, 2014 at 5:14 am
                Teej
                Participant

                  Thank you for your reply and glad to hear your surgeries went well! When you say it came back each time after three surgeries…was it local recurrence, or did it involve the nodes? I'm still quite new to this and trying to learn as much as possible. Wishing you the best as well, TJ

                • December 16, 2014 at 10:21 pm
                O_O
                Participant

                  Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

                   

                  Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

                   

                  Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

                   

                  Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

                  Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

                   

                  Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

                  • December 16, 2014 at 10:21 pm
                  O_O
                  Participant

                    Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

                     

                    Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

                     

                    Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

                     

                    Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

                    Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

                     

                    Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

                    • December 17, 2014 at 2:42 pm
                    Gene_S
                    Participant

                      Hi TJ,

                      Sorry you have to come to this site but there is a lot of useful information here and knowledgeable people that have been through a lot.

                      While my husband was much older (in his 50's when he was first diagnosed and at III C because of the size) he is now NED (no evidence of disease) for over 2  years now after progressing to IV.  He was in a clinical trial for Ipi (now Yervoy) and if you would like to read his information check out his profile.  He was first diagnosed in Jan. 2008, Stage IV in 2010 and NED since Oct. 2012.

                      Judy (loving wife of Gene)

                        • December 18, 2014 at 5:27 am
                        Teej
                        Participant

                          Judy-

                          I read Gene's story. That is awesome to hear that your husband has been NED after two years! I can honestly say I knew nothing about melanoma until a few months ago. Thank you for your reply to my post. All of the info and personal stories on this site has been so helpful.

                          • December 18, 2014 at 5:27 am
                          Teej
                          Participant

                            Judy-

                            I read Gene's story. That is awesome to hear that your husband has been NED after two years! I can honestly say I knew nothing about melanoma until a few months ago. Thank you for your reply to my post. All of the info and personal stories on this site has been so helpful.

                            • December 18, 2014 at 5:27 am
                            Teej
                            Participant

                              Judy-

                              I read Gene's story. That is awesome to hear that your husband has been NED after two years! I can honestly say I knew nothing about melanoma until a few months ago. Thank you for your reply to my post. All of the info and personal stories on this site has been so helpful.

                            • December 17, 2014 at 2:42 pm
                            Gene_S
                            Participant

                              Hi TJ,

                              Sorry you have to come to this site but there is a lot of useful information here and knowledgeable people that have been through a lot.

                              While my husband was much older (in his 50's when he was first diagnosed and at III C because of the size) he is now NED (no evidence of disease) for over 2  years now after progressing to IV.  He was in a clinical trial for Ipi (now Yervoy) and if you would like to read his information check out his profile.  He was first diagnosed in Jan. 2008, Stage IV in 2010 and NED since Oct. 2012.

                              Judy (loving wife of Gene)

                              • December 17, 2014 at 2:42 pm
                              Gene_S
                              Participant

                                Hi TJ,

                                Sorry you have to come to this site but there is a lot of useful information here and knowledgeable people that have been through a lot.

                                While my husband was much older (in his 50's when he was first diagnosed and at III C because of the size) he is now NED (no evidence of disease) for over 2  years now after progressing to IV.  He was in a clinical trial for Ipi (now Yervoy) and if you would like to read his information check out his profile.  He was first diagnosed in Jan. 2008, Stage IV in 2010 and NED since Oct. 2012.

                                Judy (loving wife of Gene)

                            Viewing 5 reply threads
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