Grace

I have had relatively mild side effects from my immunotherapy treatments (4 doses Ipi/Nivo and now on the maintenance dose of Nivo), but I am responding really well! My main side effects are itchy skin, hair loss and oral mucositis, but not severe enough to need steroids. I also had a lot of anxiety about whether I would respond, so I understand what you are going through. After my first 2 doses of Ipi/Nivo I had significant disease progression (ie. no response) and went on targeted therapy to lessen my disease burden. I was so anxious about restarting Ipi/Nivo for fear that I would not respond, but my scans 8 weeks after restarting Ipi/Nivo were extremely encouraging, larger tumors were much smaller and smaller mets were no longer detectable!

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 🙂