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Typical Carcinoid Tumor in Lungs
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (45)Comment receiving replies
Mine was found incidentally on a coronary CT, then pet scan showed malignancy in RML, along with multiple tumors/tumorlets in multiple lobes. MSK biopsy revealed carcinoid tumor. RML lobectomy revealed it was “typical “ carcinoid/NET, and that I had DIPNECH. Shortness of breath on exertion was my main symptom, which still exists. Prior to dx, I had recurring chest infections, tested positive for allergies, and now take allergy shots. It helps my main symptom of mucous in sinuses, but I’m regularly clearing it from my chest and throat. Now I know why. I have not yet needed any of the treatment shots, after a year post lobectomy. Still get scanned and meet with my MSK doctor twice a year.
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@jhhaas
I’m curious. You listed a lot of symptoms but said you haven’t needed treatment shots that could relieve so much of that as it did for me. Life changing. What is your criteria for needing shots? I can understand if you fear side effects because I decline a lot of meds due to that. But the octreotide injections have taken away my chronic cough, constant mucus, improved shortness of breath and has even improved all my animal allergies and fragrance and flower sensitivities as an added surprise. I’m petting animals for the first time in decades but still don’t hold them or touch my face after petting. The side effects are so much better than my DIPNECH symptoms were — to me at least. Would anything make you want to try octreotide?
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Funny you mentioned allergies. I had Hayfever when I was in grammar school and gradually outgrew it by the time I was 18. This past Spring and up until a month ago I had been sneezing and had itchy eyes. There must be a symptom of Carcinoid. Other than that no symptoms.