TRIPLE POSITIVE GROUP

I had my oncodermatology consult today. They were puzzled too! I saw the head of the clinic, though. He feels it is a “cytotoxic skin reaction” to Herceptin, maybe the antibody attacking EGFR receptors too which is next to the HER2, and we are going to treat it like a bad burn. The plan is to wean prednisone unless it starts getting worse again when I try, and I’ve been given a powerful steroid cream (not the one my oncologist was using), and antibiotics. They spent almost an hour with me and I have a follow up in 6 weeks.

The skin has been peeling off in chunks and they expect it all to go because it’s injured. Sounds like this is not going to be a quick thing! Since Nerlynx targets the same receptors I think that may be a no go but I will ask at the follow up. He thought trying another AI would be fine though

Thanks, cowgirl. They confirmed what I've thought for the last few days, which is that the skin stopped hurting so much because the top layers basically burned and died. It's like I'm covered in a layer of saran wrap that has to peel off. It's quite a bit of body surface area so it's fairly gross. Big chunks have been coming off in the last few days and it's a bit raw but the skin underneath seems OK so far. Anyway, I was happy that they spent so much time with me and that I got to see the head honcho, and also paradoxically that it was something very odd to him too; he had different ideas about how to address it but it means my MO didn't miss something she should have known.

Knowing that the AI is probably safe is good news, but my big question now is what does this mean for the future. What if I need Herceptin or similar drugs again later on? Is this a one-time freak thing or what?

I asked the dermatologist about Herceptin and Nerlynx in the future and the answer back today was basically that they don't know and we'd have to cross that bridge when we come to it. Apparently the prednisone precluded the usefulness of a skin biopsy. I meet again with my MO next week and will see what she says. I actually want to give the Aromasin another go, because everyone seems to think it's unlikely to have been the culprit. And I know the side effects are tolerable and people seem to have a tougher time with Arimidex, just in reading around. And if it starts happening again at least I'll recognize it immediately this time and can stop right away and then we'd actually know. But I feel like it would be OK. We'll see at my next appointment. The dermatologist said only to hold off on restarting it for now, not eliminate it forever.