We agree with the comments made by dbamos1945. My husband's orginal tumor was found in 1995. It was removed surgically. At that time, he saw the oncologist every 3 - 6 months, eventually every year but there was no treatment. 12/30/22 he was rediagnosed. After many scans, biopsies, etc., we know that his body is full of tumors and there are a few tumors in his skull. He started on 120 mg of Lanriotide January 2023 every 28 days. He is now on 90 mg. His side effects are minimal. He does experience some tiredness and weakness at times but continues to live an active normal life. It is easy to question whether the tiredness and weakness are from the Lanriotide or because he is 82 years old. We believe the treatment is successful as his tumors have remained completely stable and are not increasing.
Because this is a rare cancer, we feel it is important to work with a NETS specialist. We totally trust our doctors at Mayo Clinic in Rochester and Scottsdale (where we winter). This is a difficult journey but some much progress is being made since we started down this road in 1995. God bless and good luck to you!