What kind of NETs do you have? I feel like octreotide different for lung NETs vs GI NETs.

I’ve been taking the 28 day octreotide shots for 5 years now. My nodules are slow growing to begin with but they don’t seem to have grown during the past 5 years.

As for the shot itself, it stings a little but it’s very tolerable. I don’t dread it. Sometimes it feels like a bruise for a few days if I lay on that spot and other times nothing.

It causes blood sugar spikes in me. It added some fatigue and hair thinning (no scalp showing) that I already had from breast cancer meds I started two months earlier so it was hard to know side effects exactly for octreotide. It also stopped my 30-40 year long chronic cough and helped my allergies tremendously. The good has far outweighed the bad for me. I’ll never stop the injections as long as it keeps working.