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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)Comment receiving replies
@mieczyslaw
If you have a lot of tumorlets in both lungs it sounds suspect for DIPNECH. The worst part of that for me was respiratory issues (coughing, shortness of breath, clear mucus) for decades. Octreotide injections for 2.5 years now has minimized that and been life changing in a good way. Do you have any of those issues?
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@mieczyslaw @californiazebra
Good morning. Like Mieczyslaw, I have the same diagnosis and am also taking Sandostatin Depot (Octreotide) 30mg every 28 days. For decades, I experienced coughing, shortness of breath, and constant clear mucus. The treatment has helped to improve my symptoms. However, I do have side effects from the injection: abdominal pain, headaches, digestive issues, and abdominal cramps, among others. @mieczyslaw Have you had side effects from the Octreotide? I am curious to know.