For one in every 10 patients getting PD-1, a curious-looking side effect brings us together with the King of Pop, mixed martial arts, America's Top Models, and (sort of) Disney.
As you can see, my face has changed, and it's the result of vitiligo – the loss of pigmentation in the skin and hair (and sometimes eyes). Last autumn, there was the beginnings of some skin color changes, which I thought was a result of my bout with shingles, since both occurred on the right side of my face. Shortly thereafter, eyelashes began turning white, initially attributed to just getting old (like the grey that has crept into the goatee).
Then some of the leading melanoma researchers gave me a new outlook on my spotty skin and blanched hair. Dr. Todd Ridky at UPenn first noticed it at the MRA fundraiser last November, saying this was occasionally seen in PD-1 patients that were having good responses. I got similar – and even more enthusiastic – responses from Dr. Jedd Wolchuk from Memorial-Sloan Kettering and Dr. Antoni Ribas from UCLA in February. In particular, Dr. Ribas was excited; with his European-accented English, he gave me a "This is BEAUUUUUU-TIIII-FUL!!" as he told how vitiligo was an indication that PD-1 was working against melatonin – and melanoma cells. Up to this point, I had no idea what the heck vitiligo even was, at least by name, although most of us have seen it at some point in our lives.
Vitiligo occurs in less than 1 percent of the population across all races, but is most prominently noticed in African-Americans, for pretty obvious reasons. It certainly causes second looks and, I am sure, people wonder what is "wrong" with that person. The short answer is – nothing. It is a disease with no cure, but also little in the way of detrimental physical effects. Although, adding insult to injury, vitiligo patients are more susceptible to sunburn – always fun for those with melanoma! However, many with the affliction can and do suffer emotional insecurities; especially in children, as this can start at a young age.
Scott Jorgensen of the MMA has vitiligo, not just on his face but across the bare torso on display at each of his fights. (Something tells me he doesn't get very many people busting his chops for it.) Chantelle Brown-Young is a model on the television show America's Next Top Model. I think many of those who called her "cow" and "zebra" as a child would take back their judgment of her beauty now. Even Jon Hamm from Mad Men is afflicted, although it's nearly impossible to find photo evidence of a Hollywood star without makeup.
Then there is the most famous case of all – Michael Jackson. He revealed in 1993 that his "whiteness" wasn't some publicity thing or crazy desire to change races; it was simply vitiligo. As he lost pigmentation, dark makeup hid the effects until eventually his face was almost completely pale. Heck, he may have even worn the trademark white glove to hide the disorder. His career spanned my entire lifetime and his changing complexion became something of a running joke, yet I never realized until I had vitiligo that he suffered from a severe case of the disease.
For me, not much changes. Vitiligo doesn't bother me – it's a Sharpe tradition to grow up ugly, or at least that is what my uncles told me (maybe out of pity). I don't have to look at myself except when shaving, and even then, I am barely aware of it. I know many notice and don't say anything, but hey, feel free to ask – better to let you know it's a medicinal side effect than for you just think I am getting uglier as this goes along!
Ironically, there's only been one person outside the melanoma community who identified it to me, a good friend who also has a form of it. So, my guess is a lot of people don't really know what to say. For you all, I am more than happy to answer any questions, give you a skin update, and even laugh along at the "spot" or white eyebrow jokes (but only if it's funny and if you're ready to take some good-natured ribbing back). This is me, and this is what melanoma looks like – check that, it's what the (potential) cure to melanoma looks like. When you phrase it like that, I guess I don't look too bad now, do I?
Oh yea, and you're probably still wondering about the Disney connection I made earlier…
Josie has been convinced by yours truly that the white streaks were made by Elsa from Frozen, and having a Daddy that has encountered the Frozen princess' wrath is kinda cool to a four year old. When life gives you white eyebrows and eyelashes, you make your Frozen-obsessed pre-schooler happy with tales from Arendelle. After all, there is no reason to fuss over something when you can just let it go.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »