Already on oxygen - diagnosed with DIPNECH: What happens next?

Sorry to hear of all your challenges. It's difficult when they are coming from all directions. Again, I would ask about trying octreotide injections to see if it helps your shortness of breath (SOB) at all. It helped my respiratory symptoms for DIPNECH/NETs so maybe it's time to treat that discovery. It stopped my decades of non-stop coughing and even improved some allergies. It improved gradually and took a few months to have the full effect, but a miracle I never thought I would never see! I could finally go to the movies, work meetings, church, you name it. I can even pet animals now, but I don't hold them and push my luck. Octreotide was life-changing for me (and my friends, family and colleagues). It improved my SOB that I had upon exertion, but mine was not as bad as yours. It significantly helped issues with mucus and throat clearing. You do need a specialist who knows about NETs/DIPNECH though.

Also, you mentioned earlier that you were initially put on oxygen because your oxygen dipped too low during a sleep apnea test. Are you being treated for sleep apnea? The low oxygen at night could simply be because you stop breathing off and on during the night and not from the other lung issues. Of course, SOB during the day would not be from sleep apnea.

It seems my first lobectomy 6 years ago was dipnech related nets, my second lobectomy in Oct was adenocarcinoma EGFR/KRAS mutation, and my lower lobe has a spiculated plural based nodule which they are going to scan every 3 months now instead on 6 monthly. Thank God my left lung is OK. How are you faring??

Lots of variety for you. Interesting (and good) that all your nodules are in one lung. My nodules are scattered across both lungs. Doing well with octreotide. We will continue to monitor.