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I hope you will post updates, @rkklinger, about your husband's journey with NETs. If you have any questions or would like to share, please use Connect as a place to get support.

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Replies to "I hope you will post updates, @rkklinger, about your husband's journey with NETs. If you have..."

I'm not sure where to start this update on my husband's stage 4 NETS 31 year story that I have previously shared. We just returned from Mayo where Ron had scans, etc. His last scans were in October 2025 so it has been 7 months due to our being in AZ during the winter. The scans show several increases in size and number since the October scan. This is basically the first multiple increase since he started on Lanriotide in January 2023 when he was rediagnosed (original 1 tumor removed in 1995 - In 2023 tumors have spread throughout his skull and body). The Mayo NETS team is suggesting PRRT beginning in June 2026. The recommendation is to start PRRT now while he is in relatively good health. He is not sure if he should start now or give it 3-6 months to see what happens. We would appreciate thoughts about PRRT risks and successes. Thank you!