Hair loss/thinning

This topic has 8 replies, 7 voices, and was last updated 2 years, 12 months ago by Lucas.

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- December 29, 2021 at 1:04 am
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Christinad
Participant
Happy Holidays,

Curious if anyone has had hair thinning while on ipi/nivo? Luckily, I have a ton of hair but it comes out in handfuls daily, similarly to when I was on interferon. While on interferon I ended losing about 80% of my hair during the course of a year
Been on immunotherapy for 7 months and the hair loss isn’t as bad, but noticeable. Just wondering how long it might last or how much worse I should expect it to get?

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- - December 29, 2021 at 9:22 am
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  Beany
  Participant
  Hello,
  I had hair loss for the first six months. Then it stopped and my hair has　grown back. I also went curly!
- - December 29, 2021 at 6:23 pm
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  Grace
  Participant
  I have had hair loss for the last 5.5 months since I started Ipi/Nivo, however, I also paused Ipi/Nivo for 8 weeks while I went on BRAF/MEK inhibitors. So hard to know if my hair loss is caused more by the inhibitors, immunotherapy, or both. After 4 rounds of Ipi/Nivo and the 8 weeks on inhibitors in between, I recently switched to the maintenance dose of Nivo and my hair loss seems to have let up and I am noticing new hair growth. In total I would guess that I lost ~60-70% of my hair. But like you, I had a lot of hair to begin with so it’s not TOO noticeable 🙂
  - December 30, 2021 at 12:57 am
    
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    Christinad
    Participant
    
    Interesting that your hair came back in curly. I hope you like it 🙂
  - December 30, 2021 at 1:01 am
    
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    Christinad
    Participant
    
    Grace, I’m happy for you that it is not too noticeable. My new hairs growing back in are white. Has that been your experience as well? You’re a little younger than I am, so maybe not, but I now have white lashes, brows, and lots of white hair changes all over.
- - December 31, 2021 at 6:16 pm
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  Mark_DC
  Participant
  Hi Christina
  
  My hair turned white too – my oncologist denied it had anything to do with my treatment (old age instead) – but it could have been stress or, perhaps more likely, the immunotherapy maybe working. My daughter tells me that my hair is not grey but white (and quite distinctive as a result). This is the only form of quasi vitiligo that happened to me. I hope it’s a good sign!
  
  Best wishes and to everyone on this board, I wish a Happy and better New Year 2022
  And thanks to everyone here who has helped me in the past (maybe 4-5 years ago when I faced many challenges and advice and support here really helped me!!)
  
  Mark
- - January 1, 2022 at 4:05 pm
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  JudiAU
  Participant
  I don’t have hair loss but I did have a lot of white hair arrive post brain radiation. May have resulted from immunotherapy. Sometimes it was quite dramatic. I cut my hair very short for brain surgery and often I had strands of hair that were half brown and half white.
- - January 13, 2022 at 11:18 am
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  Rocco
  Participant
  Many years ago I was on the original Phase III trial for Ipilimumab (Yervoy) and lost about 1/3 of my hair.
  Luckily, I had a thick head of hair, so it thinned out a lot but wasn’t too noticeable. It all grew back curly!
  Hang in there!
- - January 19, 2022 at 10:57 pm
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  Lucas
  Participant
  I lost about 50% of my hair on iPi/nivo. When the hair came back it was all white. 3 years later it is still turning white and I continue developing vitiligo spots on my skin where I previously had tumors.