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My husband has been having Lanriotide injections every 28 days for 2 1/2 years. He is Stage 4 with tumors throughout his skull and body. He had 1 tumor removed 30 years ago when there were no medication options. He has minimal side effects. The first week after injection, he isn't very hungry and has a hard time eating. However, he does everything he wants to do -- golfing daily, 120 pushup/day, 30 minutes on a stationary bike. Really the only issue is not likely most food and not being hungry. He takes enzymes to help with digestion which definitely makes a difference.

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Replies to "My husband has been having Lanriotide injections every 28 days for 2 1/2 years. He is..."

Hello @rkklinger and welcome to Mayo Connect. I really appreciate your post. Your husband's level of activity is encouraging to us all! It does show how NETs is a chronic disease and one that can be lived with for many years. To those in our group who are newly diagnosed this can be good news. You also demonstrate the importance of maintaining regular follow-up appointments.

Do the tumors in the skull cause him much discomfort?