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What does the future look like for a stage 4 NET patient?
Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (37)Comment receiving replies
@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?
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@tomrennie I’m curious about how your bones were diagnosed. My net was small bowel and ovary both removed metastasized to liver. I have bone pain that Mayo has been using low dose radiation on it helps the pain go away but just crops up somewhere else. My right shoulder elbow feet and lower legs have been worst. I keep doing physical therapy but recovery for me seems long I can be soar for 4 to 5 days after 45min of activity. Thankful that low dose radiation has kept me active. I havnt come across anyone with bone nets and I’m worried I have them. Appreciate anything you open to sharing.