@ekri I'm so sorry to hear about your sister. Cancer and cancer treatment are so challenging. Sorry to hear of all her post-op complications and need for chemo.

I'm responding since I was named above. I have typical carcinoids which are less aggressive and less likely to spread than atypical. Although the tumors have grown, I'm still stage 1 after 30+ years. I've been taking monthly octreotide injections for 3 years to slow growth and manage chronic symptoms. Octreotide has done a great job minimizing the chronic coughing and mucus. Still have shortness of breath upon exertion, but better than before.

Have you sought out a second opinion? Working with a team of NETs specialists? Non-NETs specialists don't usually know much about treating NETs. Using providers with experience is so important for the best outcome. My breast cancer oncologist knew nothing about NETs, but was going to devise his own treatment plan anyway. Luckily, my pulmonologist told me there are NETs specialists so I requested a referral to a NETs team at UCLA for treatment and I'm so glad I did. Different plan. They are coordinating with my BC oncologist so I can receive my injections at the local office for convenience. Lots of NETs teams available depending on your location. Even if you're seeing a NETs specialist, it would be good to get a second opinion if you have any concerns.

Prayers for your sister and you.