No vitiligo?

Vitiligo is thought to be a good sign but no, most people who are doing well on immunotherapy do not get it. Side effects do pop up late and after immunotherapy is complete but no I for one don’t have it.

Immunotherapy vitiligo is much different than the definition given above. Most individuals who respond to immunotherapy whether partially or completely will not have vitiligo. I did however develop vitiligo late into treatment. I failed Pembrolizumab and after receiving the ipi/nivo combo the condition developed. My vitligo showed up all over my groin where I had tumors. Large random patches of my hair fell out and came back white. My Scars turned white and anywhere else I had tumors (Legs, Feet) also turned white. This condition is not something to count on, but something random that could happen, likely when you’re least expecting it. I had Stage 4 acral melanoma and did have a complete response after many failed drugs (Pembro, Single Nivo, T-VEC.)

I did not have any vitiligo during my 12-month adjuvant nivo treatment for stage 3a/b. After progressing a year after that initial 12 months in lung and groin, I started ipi/nivo every three weeks for 3 months. I did not respond initially (and was asymptomatic). However, two months after my last dose of the combo I developed vitiligo and some rheumatoid arthritis. My facial hair became patchy white, and I noticed some “halos” of unpigmented skin around moles on my arm. My lung tumor and groin lymph node disappeared.

Unfortunately after about 4 months of this initial response, I progressed in the brain, as well as a few subcutaneous lesions and a lymph node. Currently I am on a TIL trial, but my beard is still white 🙂