nsreenan

This trade-off is coming *well before* the efficacy for me–as you say, you’re “most likely going to live through it”…I hope there’s a decent ROI in my case, but if there isn’t, the state of my endocrine system will make no difference when I’m dead.

Thanks for your answer. I willingly go down any internet rabbit hole offered…Probably give me a sense of control which I’ll never really have. 😉

thanks for your answer and links! I can’t resist links 😉 ps. why does your blog address readers (?)melanoma drug trial participants as “ratties”?

I don’t understand why the endocrine system is uniquely and permanently affected while the other systems recover function after immunotherapy is discontinued. Does *anyone* understand this?

thanks much for the link! good read indeed! It confirms what I might be experiencing and what my oncologist warned me of–that endocrine related AEs might not be reversible. 🙁

I’m with you on not getting my port out until I’m sure I won’t need it. I never want to have a port installed ever again–nobody told me it we be so painful to have one put in. I was in bed for 3 days with ice pack on it! However, I needed a port b/c I’m a “hard stick” and terminally needle-phobic. The port is marginally more acceptable than peripheral needles–I refer to it as a “needle trampoline” because it feels like the nurses attach all the tubing with a thumbtack to the port.

Thanks Celeste, It definitely does help–especially the part about 8 years of having NED. I too had surgery on my primary in 2007, and in-transit or local recurrence in 2008. Surgery was the name of the game in 2007 and 2008 because there *was* nothing else! Nancy

Johnjk04, Thanks for your answer. It helps me to get the jist of how much longer this treatment will last. When was the first clinical trial of Yervoy / Opdivo? When was your last treatment? I’m curious of how long I’ll have to be followed by scans when the treatment ends. Your 15 treatments over two years means you had them somewhat less frequently than once a month—mine are every 4 weeks. Also, your treatment day was long! Mine is about two hours, including a visit with my oncologist. I’m aware that even 10 years ago the median survival with (brain) metastases was maybe 4-5 months. Maybe I am lucky that my melanoma took 13 years to metastasize, but because of that, I’ll never again believe that my melanoma is ever “gone”.