@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe because I have lung NETs not any type of GI NETs. I don't have carcinoid syndrome and feel bad for those of you that do. I do know octreotide really took away my appetite and I already had a lot of food restrictions for many other ailments so I'm very limited in what I can eat anyway. I lost 5 pounds a month for the first six months much to the dismay of my oncologist. Then my weight stayed stable for 6 months. Then the next 6 months I gained 30 pounds. It was so weird because I felt my diet was the same all 18 months. I've since lost nearly 30 pounds again, but intentionally this time.

I do have several side effects from the octreotide. The most frustrating ones to me are bradycardia (slow heart rate -- down to mid to high-40s when resting). It also made me diabetic with a lot of weird glucose spikes. But I coughed constantly for 30 years and other respiratory issues prior to taking octreotide so I love octreotide. It was a game changer for me. Before, it was like having bronchitis for 30 years. It annoyed me and everyone around me. Try to go to work, a movie or out to lunch with that issue. My 50+ lung nodules were an incidental finding 15 years ago -- slow growing. I'm guessing they've been there for 30 years due to my symptoms. Took doctors 12 years to figure out what they were. Stumped everyone. They finally insisted on a biopsy when my breast cancer came back. Aha! Octreotide also increased some side-effects I was already having from my breast cancer meds, but again, worth it.

Well, nana120 the unicorn zebra, I also have a few zebra diseases, but even zebras run in herds so we're all in this together. Hope you can gain some weight back. 🙂

Great news for everyone else that is having good results with the lanreotide too!!!

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