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I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew about all the nodules for a dozen years of incorrect guesses, my local pulmonologist told me my coughing was from GERD. I didn’t believe it and he wasn’t correct. I still have GERD but not the coughing due to the octreotide. My pulmonologist has one other DIPNECH patient but she’s asymptomatic and he didn’t even know about octreotide as a treatment. He’s really not interested in my case so I may switch to a pulmonologist on my NETs team at some point but oncology and the interventional radiologist are managing it well. You would think a specialist would be excited about following a rate disorder but I find they don’t want to invest time in learning about it when they may never have another case.
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Are you taking a treatment? So interesting, these various symptoms, like GERD! I had it for years and on meds before I ever knew about DIPNECH. About six years ago I had a horrible cough that would not go away despite various kinds of antibiotics and my doctor kept suggesting maybe it was allergies. Finally got tested for allergies and sure enough, it seems. I’m allergic to pretty much everything, so I just assumed That was causing a constant sort of postnasal drip kind of thing. They put me on allergy shots - got better, but the allergy markers never improved when I was retested. So they put me on Fasenra shots once a month, which is mainly to treat asthma, which I do not have, but also seems to work on allergies. I feel the same as before, but my absolute eosinophils went to zero in my blood work. And since that time, I have not even had a cold, or Covid or any other type of serious congestion. It was after all this that I then was diagnosed with the lung tumor and DIPNECH. But now I know it’s all related. I still take an OTC allergy med each day to control the sinus fluid, and although it’s probably not related, it sure feels like it must be. I feel pretty stable and that’s why I haven’t pushed to get on any other treatment. I also have great confidence in the MSK but he is the surgeon, though he is very aware and knowledgeable about NETs and DIPNECH. But he seems to expect that my local pulmonologist will know enough about it to handle my symptoms. And the local guy is very good in general, but if he doesn’t know about DIPNECH, it’s just hard.