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 Hi and welcome to Mayo Connect. Similar to @vinnie694, I was diagnosed with stage 4 NETs in 2022 but in August. My primary is in my pancreas. It has spread to my liver and bones. I was on CAPTEM, capecitabine and temozolomide, chemo for 13 cycles. They shrunk the size of my primary tumor in half and greatly reduced the number and size of my lesions. I have been on a reduced dose of capecitabine since. I hike 4 miles a day 5-6 days a week and am enjoying life. It hasn't always been easy, but the sacrifices are well worth it. I am happy to wake up every day. What concerns do you have? Do you have a treatment plan moving forward?

Thanks Vinnie and Tom/Rennie! I wish you both the best!
Its so good to hear that you are both active and enjoying your lives. I have never talked to anyone with what we are all experiencing. Your response is greatly appreciated. I talk with the doctors absolutely about outcomes but just have never heard from other patients' points of view. It's good to hear that all is relatively going well for the both of you. My focus to to remain active, exercise and take the same injections of the octreotide you take Vinnie and visiting Mayo every 90 days for the checkups. I'm always listening to my body for hints of the disease so talking with you on your journey and any advice or things to be listening for are very helpful. My plan is to live with this but to not let it impact my quality of life. It sounds like you both are doing the same and that exercise, healthy lifestyle, and diet and for me less stress will all contribute. Thanks again, any advice is always most welcome.

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

My husband was diagnosed with stage 4 pnet with a 50% tumor burden in 2008. After initially been given a 25% chance of a 5 year survival, he is still here and living life. He has had surgery, Y90, lanreotide, everplimus and most recently captem and now a maintenance dose of capcetibine.
It has been a struggle and he has persevered through it all, with God's grace.

@jameshoch That sounds like a great plan. I am a believer in never stop moving. It does a body good. What will your 90 day checkups at Mayo look like? Bloodwork? Scans? Anything else? I get treated at Mayo Phoenix.

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@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!!

@jameshoch
My husband was diagnosed in 2023 with grade 1, stage 4 NET. The primary tumor is in the samml bowel, but he has one in the pericardium, and numerous tumors in the liver. He has been on monthly Lanreotide injections which has significantly reduced the flushing symptoms. Other than that, no other treatment has been necessary so far. He is living a pretty normal life and working full time. Best of luck on your journey.

@tomrennie
Yes blood work CT's with contrast and visits. Going to meet with a oncology interventionist. Plan is to coordinate nutrition with active life style, medications to maximize my sugar levels etc. It feels like the sandostatin has elevated my sugar