Good luck!

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical lung NETs along with DIPNECH which is a pre-cancerous condition that can precede that and cause multiple tumors. I have over 50 lung tumors, both lungs, visible on the scans. First discovered in 2008, but not biopsied and diagnosed properly until 2020. I have been taking Octreotide (similar to Lanreotide) injections every 4 weeks for 2 years. I had 30 years of chronic coughing, clear mucous, and shortness of breath upon exertion and that is 90% better from the Octreotide injections so it's life changing for me. I love my Octreotide! Also supposed to slow the growth, but typical carcinoids are already slow growing. No lung NETs metastasis for me. I had already been taking two breast cancer (unrelated) meds for two months that cause a lot of side effects so hard to tell with Octreotide, but I do know it caused me to be diabetic, slowed my heart rate more and made blood pressure even lower. I felt like it added to fatigue and increased thinning hair that had started with other meds. No digestive issues from it. Having said all that, my body tends to overreact to all meds so your side effects may be less. It's doable and worth it for me.

Do you each have typical or atypical carcinoids? Good luck to you both!

Hello @dak10,

I see that you were having an abdominal scan in April. Did you learn anything new from that scan.

I hope you are doing well. I would like to hear from you again. Will you post an update?