Over 30 months have come and gone…I remain NED!! 3 plus years now .
I had a biopsy yesterday because I had a hot node on in my neck…it was infection from sinus/ears etc…not melanoma. Final infusion of anti pd-1 today…no more! FYI I was told if I need it after it has been approved I would probably benefit from it and could do it again!
Side note…Moffitt has had 4 patients out of 120 got chicken pox/shingles very quickly after infusion…talked with Dr W about it today. It is actually a high concern at this point….4 at this point doesn’t seem like so many BUT…given only 120 it really is cause for pause…they are working on it with BMS/CDC/ FDA…they have no idea what is going on with the immune system…
Congratulations, Lynn!! Way to go the distance. Interesting info re varicella. We have much to learn about all the ways anti-PD1 has affected our immune systems I’m sure! Enjoy your break from infusions!!! May it last a lifetime! Celeste
The side effects are not bad at all…I did get a red flush most of the times I did the infusion of anti pd 1. I also had mild flu like symptoms ( like chills and my knuckles ached and other joints) but it lasted less than 12 hours. It used to come about 2 or 3 days after infusion and then later it came the evening of the infusion. My major complaint is probably my lack of energy…once I get going I am fine.
I have dry skin and a burned out thyroid which is now maintained by Synthroid. I have some Vitiligo ( white splotchy areas where my freckles seem to have vanished . The biggest side effect has to be NED!