What does the future look like for a stage 4 NET patient?

Good morning, I was diagnoses with Stage 4 NET's in December 2022 primary in small intestines and metastasized to the Liver. I go to the gym on the average of 4-5 days a week. I get injections every 28 days since February 2023 Started with Lanreotide, then switched to Ocreotide after a few months. Had Lutathera treatment in 2025 and currently still showing the tumors decreasing. So after 3 years to summarize I am still going to the gym, I work outside in my garden, I get tired a little faster than I used to (but that can be age also!) And the tumors are smaller than they were 3 years ago.. I wish you the best on your nextstep..

@jameshoch If you don't mind me asking which Mayo location do you visit? I go to the one in Jacksonville Florida.

I will tell you the Mayo clinic in Jacksonville feels like a resort to me. I love Dr. Starr. I've only been there one visit but it's amazing

I want to ask a question about the exercising. I was an avid runner and I was busy four of the 5 days exercising. They did discover a brain tumor in June of last year and since then I have not been able to run or go to the gym. I still have a balance issue not all the time but I know it's there. I feel like if I don't run or get my steps in I'm a failure. I don't lay around by any means but it's not safe for me to go to the gym. Any other thoughts?

I want to ask a question about the exercising. I was an avid runner and I was busy four of the 5 days exercising. They did discover a brain tumor in June of last year and since then I have not been able to run or go to the gym. I still have a balance issue not all the time but I know it's there. I feel like if I don't run or get my steps in I'm a failure. I don't lay around by any means but it's not safe for me to go to the gym. Any other thoughts?

@crawfordville I had balance issues. I am not sure, if they were from my metastatic pnet, the chemo, going deaf in one ear almost six years ago, or a combination of all of them. My son had balance issues, when he had a concussion. He went to vestibular therapy. I tried some of his therapy exercises, and they really helped. Have you tried anything like that?

I think my balance issue was due to my brain tumor. It was a large tumor that was sitting on the cerebellum. The neurologist said I would have balance issues for a while. He also did say that might be the new me.

@jameshoch
My husband was first diagnosed with a carcinoid tumor in 1995. They removed the tumor with 1/3 of his colon as well. At that time, there wasn't much information and no medications available. 28 years later, he was rediagnosed with tumors throughout his skull and body - Stage 4. He has been on Lanriotide for 3 years. The tumors are stable and have not gone into the organs. He had his last scans in August and his oncologist put him on 6 months scans instead of 3 months. Recently he had a serious AFib incident which has caused him to be tired and weak at times. However, it is hard to know if his cancer is causing some of that. He continues to exercise an hour a day, riding a bike and doing 100 pushups. We feel that at 82 years old, he is doing great. He works hard at keeping a positive attitude which is sometimes difficult but really helps!! Good luck on this journey! There are ups and downs but doing your best to stay healthy helps!!