@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b
I see some of you have lung NETs, some GI NETs, but talk about breathing issues and mucus. I have lung NETS -- typical carcinoids. I also have DIPNECH which is really rare and can be a precursor to lung NETs. I have 50+ tumors approx. 1 cm across both lungs. I had tumor microwave ablation at UCLA to destroy the largest one that was 2.6 cm (they were afraid that one might metastasize). We first discovered the tumors in 2008 -- an incidental finding. I wasn't diagnosed until 2020. I had a chronic cough, mucus for 30 years plus shortness of breath and fatigue just with walking. My NETs was diagnosed with a biopsy. I then had the DOTATATE Cu64 PET scan, but it turns out I'm one of the people without somatstatin receptors so that didn't even catch what we already knew. Something like a third of the NETs patients don't have those receptors. However, even though I don't have those, octreotide helps symptoms of DIPNECH.

So I've been taking octreotide injections every 4 weeks for over 2 years. Within about 3 months of taking them, my coughing, mucus cleared up and the shortness of breath improved. They also give octreotide for some GI NETs to control symptoms. I'm wondering if this can work for you? Also, as far as seeing the tumors in your lungs. My interventional radiologist at UCLA told me it's not the 50 tumors we can see that cause my symptoms, but the hundreds or thousands of tiny tumorlets that are too small to see on CT scans, but line my airways. They know they are there based on PFTs, maybe the general structure in scans and from other cases. Octreotide might be something to discuss with your oncologist. Octreotide has been life changing for me. It's also supposed to slow down tumor growth, but mine grow very slowly anyway. It took them a decade to double in size.

I also have GERD, sleep apnea and asthma with allergies or when sick, but it turns out the lung NETs and DIPNECH were to blame for most all of my symptoms. My chemical sensitivity has even improved. Best of luck to all of you.

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