Vitiligo
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Vitiligo

› Forums › General Melanoma Community › Vitiligo

  • Post
    • November 30, 2016 at 12:52 am
    KAF
    Participant

    Hi all

    shortly after I started ipi/nivo I noticed my eyebrows turning white.  This was in June

    Now all the hair on my body is pure white – head, eyelashes, arms, legs, etc…  not a drop of color at all. I don't seem to have any skin discoloration at all.

    My scans in October were great and I am currently on Nivo only maintenance.

    My question is – has anyone else had this happen to them and then have the hair color come back or will mine stay white permanently?

    thanks

    karen

     

Viewing 17 reply threads
  • Replies
      • November 30, 2016 at 2:32 am
      sweetaugust
      Participant

      Hi Karen, 

      I've been on Keytruda for 4 years and have had no evidence of melanoma for the last 2.5 of those years.  I too developed vitiligo early on in my treatment and my doctors at Dana Farber said that it shows that the drug is working.  They said that those patients that developed vitiligo tended to show that the drug was working for them.  🙂 

      All my best,  Laurie

      • November 30, 2016 at 2:32 am
      sweetaugust
      Participant

      Hi Karen, 

      I've been on Keytruda for 4 years and have had no evidence of melanoma for the last 2.5 of those years.  I too developed vitiligo early on in my treatment and my doctors at Dana Farber said that it shows that the drug is working.  They said that those patients that developed vitiligo tended to show that the drug was working for them.  🙂 

      All my best,  Laurie

      • November 30, 2016 at 2:32 am
      sweetaugust
      Participant

      Hi Karen, 

      I've been on Keytruda for 4 years and have had no evidence of melanoma for the last 2.5 of those years.  I too developed vitiligo early on in my treatment and my doctors at Dana Farber said that it shows that the drug is working.  They said that those patients that developed vitiligo tended to show that the drug was working for them.  🙂 

      All my best,  Laurie

      • November 30, 2016 at 3:31 am
      Bubbles
      Participant

      Here is a post (with many reports/links within) that might interest you covering vitiligo….it's positive prognostic indications, incidence and more…

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html

      I developed vitiligo after Stage IV melanoma while being treated with nivo in a phase 1 trial in 2010. I still have vitiligo…but I remain NED. I wish you well. Celeste

        • November 30, 2016 at 5:24 am
        KAF
        Participant

        Thanks for the responses.

        I am currently NED so the treatment definitely did work for me so the vitiligo theory did ring true in my case.

        What I wasn't sure about is if any hair color would return or will i always have white hair.  I know that hair color is insignificant in comparison to cancer but I am just curious…

         

        thanks

        karen

        • November 30, 2016 at 7:35 am
        corgimom
        Participant

        Hi, I had the same response to the combo ipi/PD1–became NED, but I lost all the hair color on my body.

        I've been NED now for two years, but the color has never returned. Everyone's reaction is different, of course, but mine never did. As you say, insignificant compared to Stage IV……

        • November 30, 2016 at 7:35 am
        corgimom
        Participant

        Hi, I had the same response to the combo ipi/PD1–became NED, but I lost all the hair color on my body.

        I've been NED now for two years, but the color has never returned. Everyone's reaction is different, of course, but mine never did. As you say, insignificant compared to Stage IV……

        • November 30, 2016 at 7:35 am
        corgimom
        Participant

        Hi, I had the same response to the combo ipi/PD1–became NED, but I lost all the hair color on my body.

        I've been NED now for two years, but the color has never returned. Everyone's reaction is different, of course, but mine never did. As you say, insignificant compared to Stage IV……

        • November 30, 2016 at 5:24 am
        KAF
        Participant

        Thanks for the responses.

        I am currently NED so the treatment definitely did work for me so the vitiligo theory did ring true in my case.

        What I wasn't sure about is if any hair color would return or will i always have white hair.  I know that hair color is insignificant in comparison to cancer but I am just curious…

         

        thanks

        karen

        • November 30, 2016 at 5:24 am
        KAF
        Participant

        Thanks for the responses.

        I am currently NED so the treatment definitely did work for me so the vitiligo theory did ring true in my case.

        What I wasn't sure about is if any hair color would return or will i always have white hair.  I know that hair color is insignificant in comparison to cancer but I am just curious…

         

        thanks

        karen

      • November 30, 2016 at 3:31 am
      Bubbles
      Participant

      Here is a post (with many reports/links within) that might interest you covering vitiligo….it's positive prognostic indications, incidence and more…

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html

      I developed vitiligo after Stage IV melanoma while being treated with nivo in a phase 1 trial in 2010. I still have vitiligo…but I remain NED. I wish you well. Celeste

      • November 30, 2016 at 3:31 am
      Bubbles
      Participant

      Here is a post (with many reports/links within) that might interest you covering vitiligo….it's positive prognostic indications, incidence and more…

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html

      I developed vitiligo after Stage IV melanoma while being treated with nivo in a phase 1 trial in 2010. I still have vitiligo…but I remain NED. I wish you well. Celeste

      • November 30, 2016 at 2:49 pm
      Hukill
      Participant

      I have vitiligo on both arms, started about 4 weeks ago. I get my 4th nivo only dose friday then I should go on the ipi/nivo maintanance every 90 days until 10/2018. I haven't noticed any change in hair color. I enjoy the mild side effects as I know my body is reacting to the drugs and therefore killing the cancer also. I am glad I don't have to worry if the drugs are working or not as I know they are as long as I continue to have side effects, especially new ones. I have had a dry mouth for about 9 weeks now and after my last nivo dose I would get a severe pain shoot up my right jaw thru my ear into my head on about the 3rd chew of food. I guess that my salava gland on that side was effected more after the treatment. The pain lasted for about 6 days and has gone away. My onocologist told me vitiligo was a side effect but not very common but in the last several days there has been more postings regarding vitiligo.

      • November 30, 2016 at 2:49 pm
      Hukill
      Participant

      I have vitiligo on both arms, started about 4 weeks ago. I get my 4th nivo only dose friday then I should go on the ipi/nivo maintanance every 90 days until 10/2018. I haven't noticed any change in hair color. I enjoy the mild side effects as I know my body is reacting to the drugs and therefore killing the cancer also. I am glad I don't have to worry if the drugs are working or not as I know they are as long as I continue to have side effects, especially new ones. I have had a dry mouth for about 9 weeks now and after my last nivo dose I would get a severe pain shoot up my right jaw thru my ear into my head on about the 3rd chew of food. I guess that my salava gland on that side was effected more after the treatment. The pain lasted for about 6 days and has gone away. My onocologist told me vitiligo was a side effect but not very common but in the last several days there has been more postings regarding vitiligo.

      • November 30, 2016 at 2:49 pm
      Hukill
      Participant

      I have vitiligo on both arms, started about 4 weeks ago. I get my 4th nivo only dose friday then I should go on the ipi/nivo maintanance every 90 days until 10/2018. I haven't noticed any change in hair color. I enjoy the mild side effects as I know my body is reacting to the drugs and therefore killing the cancer also. I am glad I don't have to worry if the drugs are working or not as I know they are as long as I continue to have side effects, especially new ones. I have had a dry mouth for about 9 weeks now and after my last nivo dose I would get a severe pain shoot up my right jaw thru my ear into my head on about the 3rd chew of food. I guess that my salava gland on that side was effected more after the treatment. The pain lasted for about 6 days and has gone away. My onocologist told me vitiligo was a side effect but not very common but in the last several days there has been more postings regarding vitiligo.

      • November 30, 2016 at 3:04 pm
      Gene_S
      Participant

      My husband had the Ipi/ GMCSF combo started it in Mar. 2011 and has been NED for almost 4.5 years and he has vitiligo on the face and neck.  His eyebrows and beard are almost all white but it never affected the hair on his head.  The white shows no sign of changing back.

      Judy (loving wife of Gene Stage IV and now NED for almosst 4.5 years.

       

      • November 30, 2016 at 3:04 pm
      Gene_S
      Participant

      My husband had the Ipi/ GMCSF combo started it in Mar. 2011 and has been NED for almost 4.5 years and he has vitiligo on the face and neck.  His eyebrows and beard are almost all white but it never affected the hair on his head.  The white shows no sign of changing back.

      Judy (loving wife of Gene Stage IV and now NED for almosst 4.5 years.

       

      • November 30, 2016 at 3:04 pm
      Gene_S
      Participant

      My husband had the Ipi/ GMCSF combo started it in Mar. 2011 and has been NED for almost 4.5 years and he has vitiligo on the face and neck.  His eyebrows and beard are almost all white but it never affected the hair on his head.  The white shows no sign of changing back.

      Judy (loving wife of Gene Stage IV and now NED for almosst 4.5 years.

       

      • November 30, 2016 at 3:05 pm
      Hukill
      Participant

      WOW!!! Just reviewed the website and it made my day and I am so happy I have vitiligo!!!!!

      • November 30, 2016 at 3:05 pm
      Hukill
      Participant

      WOW!!! Just reviewed the website and it made my day and I am so happy I have vitiligo!!!!!

      • November 30, 2016 at 3:05 pm
      Hukill
      Participant

      WOW!!! Just reviewed the website and it made my day and I am so happy I have vitiligo!!!!!

      • November 30, 2016 at 5:07 pm
      ed williams
      Participant

      Hi Karen, just to add to what has already been given is a video o  Dr. Weber, go to the 31min mark and I also developed white paches on my hands, arms and legs. Best Wishes!!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

      • November 30, 2016 at 5:07 pm
      ed williams
      Participant

      Hi Karen, just to add to what has already been given is a video o  Dr. Weber, go to the 31min mark and I also developed white paches on my hands, arms and legs. Best Wishes!!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

      • November 30, 2016 at 5:07 pm
      ed williams
      Participant

      Hi Karen, just to add to what has already been given is a video o  Dr. Weber, go to the 31min mark and I also developed white paches on my hands, arms and legs. Best Wishes!!!!Ed https://www.youtube.com/watch?v=ysbSCeqJpq0

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