Connect
← Return to What topics do you want for the Neuroendocrine Support Group?
Discussion
What topics do you want for the Neuroendocrine Support Group?
Neuroendocrine Tumors (NETs) | Last Active: Feb 8, 2023 | Replies (45)Comment receiving replies
Started with two rounds of CAPTEM. Didn’t work at all. Then did 10 rounds of FOLFIRINOX, followed by 50 rounds of FOLFIRI. I was stable from Oct 2020 until Oct 2022 on FOLFIRI. Scans in November 2022 showed growth in a few liver tumors so I started PRRT with octreotide injections in December 2022. Second PRRT treatment is in February.
What are they doing for you? It’s so interesting to me how they have to design treatment for each of us because every case is so different!!
Replies to "Started with two rounds of CAPTEM. Didn’t work at all. Then did 10 rounds of FOLFIRINOX,..."
Also, there are 3 tumors, but one very large.
Sorry, I just read your response. Thank you for your time and experience.
Connect
Thank you. I'm so new to this. Saw oncologist for first time this afternoon. They're sending me for petscan. He indicated his gut instinct is that my liver tumor originated elsewhere. He is still trying to connect the dots. I would like to stay in touch with you and share info. Is that ok with you?