Vitiligo and Nivolumab

Very interesting post, thank you; I've seen the same response personally in areas adjacent to both MM and AK. For what it's worth, Clarins makes a tinted (multiple shades) sun block which works well on the face.

I look forward to responses specifically addressing the Nivolumab-driven vitiligo / leukoderma condition.

I developed vitiligo while on Keytruda.  In my case it got worse over the course of the treatment but I'm so fair that you can barely tell I have it.  My freckles all disappeared.  My treatment ended in June of 2015 and I'm still white as snow.  I don't mind it at all because I'm in remission.  

Best wishes!

Terrie

Vitiligo may not be "pretty"…but there are many who would give anything to be in our shoes.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html

I wish you well.  Celeste

My husband started IPPI in March 2011 and after the initial 4 doses in 12 weeks went on the maintenance dose of Ippi every 12 weeks until Dec. 2013.  He developed the vitiligo and it is on his face and neck to the collar bone and never seemed to travel farther and he also developed the white eyebrows and then into the beard mustache area.

The good news is in July 2012 he became NED and has remained that way.  So vitiligo is a small price to pay for NED.  His doctor seemed excited when the eyebrows started turning white as he said he thought of it as Ipi is working.

If you want to read more check out his profile.

Judy (loving wife of Gene – Stage IV and now NED for almost 5 years on Clinical Trial Ipi 10 mg/kg and GM-CSF)

I too developed vitiligo around the 3rd dose of the combo (November 2016) and it started on my hands and has slowly appeared in spots on my arms. It is a very good sign. I found a study that was done that found that only 3% developed vitiligo but those 3% were 4 times less likely for melanoma to return. Some who have vitiligo have posted that they are still NED even after several years. I am close to "complete resolution" and I don't care if I turn as white as a sheet as long as I saty NED.

Good luck on dodging the side effects. I have had at least 5 side effects at the same time since around the 3rd combo dose. None of mine were bad enough to stop treatment or placed on steriods but several sucked pretty bad, fever for 6 weeks, no spit for 11 weeks and the fatigue is horrible but all worth it to be where I am now.

March 2nd I just finished my two years of Nivolumab treatments, and am currently NED… I developed vitiligo in a few spots about a year into my treatments. Literally from the top of my head to my feet, but really only a few spots… and I'm so fair, it's hard to see at first. Best wishes!

Hi Mark! 

Of course it's a good sign, but my 19 yr old son hates the vitiligo. His has spread a lot. His eyebrows and side burns were completely white w white through his hair too. His face, neck and torso have a lot of it now. But he did Pembro, Taf, and ipi plus biochemo and lots of radiation. He is now doing well and I think it has not grown in several months. His mostly grew on treatment. Ipi has not seemed to add any growth. He loves the outdoors and feels like it's a big hinderance….but as his mom I am happy those drugs helped him:) 

thats our vitiligo story:) Dr says not many get it….but Jake sure did. Hope it's doing it's job for you as well!! 

Kerri

HI. 

I was diagnosed stage 4 in may 2016.  Started going white fall of 2016.  I now have white hair on every part of my body and i never had much color on my skin but now I'm even whiter.  I look like an albino.  I am deciding to rock the new look and screw everyone else who doesn't like it 🙂   I work for a fashion tradeshow and when our fashion director saw me in February he told me not to color it and to wear red lipstick to show it off (not that you're going to wear lipstick – not that there's anything wrong with it).  Just be proud of it and think of it like a scar of what you've survived.  Wear it like a badge of courage!!

Greetings Mark and all,

I thought I was going crazy when small round depigmented spots showed up first smack dab on my forehead of all the great places. Then they started becoming more and more, moving to the sides of my jaw, neck, shoulders, arms, chest, back and one for good measure on my leg. When I first noticed them I asked my doctor what they were and if they could be related to the treatments. Doctor was dismissive and advised that I put mild bleach on them as they’re just a skin fungus. I wasn’t convinced so I started searching the literature and found, like others have posted, it’s quite uncommon but is a possible side effect of the Opdivo. I also took it as a sign that my immune system is kicking some melanoma butt… really kicking it so much that it’s now affecting my skin pigmentation… a small price to pay for health. However, I was concerned for the conifnued health of my skin as I am very fair skinned and burn easily as it is. I have noticed a progression of the spots over the last 4 months and wonder if I’ll turn into a backwards Dalmatian when all is said and done. Do they stop forming after a while? Most of all I’m just so happy to learn that this is something from the treatment so I’m not a crazy cancer patient looking for things to associate with the treatment. 

Much thanks for all the information, and perseverence to you all.

Jessica