We thought we had a plan until the middle of Wednesday.
My husband is measured and targeted for radiation that was scheduled to begin today (that's the photo with this post).
Now we are back in consultations because there is a deep lymph node that lit up on the Pet which may or may not be melanome and can't be felt under the right armpit, and the new tumor on the back of his head that showed up last week which is undoubtedly cutaneous melanoma.
Oncologist recommended trying a 3rd immunotherapy, which I, at this point, am opposed to. His theory is "maybe" the Yervoy has changed the environment for the tumors so returning to a different PD1 (Optivo, thank you commercials) may help, because he had 1 patient where this helped. As you know, I'm not a fan of an N of 1. I'm also concerned about the total amount of immunotherapies he's been exposed to already and potential for creating autoimmune serious problems with more exposure for unknown gain, although our oncologist seemed unconcerned about this. He also says surgical removal of these ongoing tumors seems now to be a bad idea at the pace with which they are showing up.
I asked for our doctor to contact NIH because the shoulder has the largest tumor load, and I don't want it removed if we need it to determine TIL or other clinical trial eligibility, or to throw more immunotherapy at my husband which could eliminate him from a TIL trial without knowing if he's even eligible for TIL, which is a nasty protocol in and of itself.
Yesterday our oncologist spoke with NIH and they requested records, so now the radiation protocol is on hold for a week while we wait for the initial records review in Bethesda, MD to see if my husband may be a potential trial candidate.
.Keeping this community in my heart and prayers. Looking forward to to a visit this weekend with 2 of our daughters before one heads out to the rain forest in Panama for a college course Sunday.
peace, even in the dark places,