Good luck to you. I see an oncologist in Phoenix, but I’m only stage 1B. Taking Tagrisso. I will be interested in your experiences at Mayo Jacksonville.

Hello @sstiffel64, I'm sure it's difficult to deal with this diagnosis and pain! I hope you find what you are looking for with the switch to Mayo in Jacksonville. Sometimes a fresh review of your situation is exactly what's needed.
You likely know that understanding the driver of the cancer is critical in selecting treatments. Has there been a biopsy or other test that's shown that the new progression is driven from the neuroendocrine tumor, and not a second separate cancer?
There is a specific group for NET patients that may be helpful for you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

My husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!