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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)Comment receiving replies
Welcome @triveraderubio
As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare and poorly understood lung condition that is characterized by the abnormal overgrowth of certain cells in the lung (called pulmonary neuroendocrine cells) that receive signals from nerve cells (neurons) and produce hormones."
Read more here https://rarediseases.info.nih.gov/diseases/10780/diffuse-idiopathic-pulmonary-neuroendocrine-cell-hyperplasia
@amd12 has also been diagnosed with DIPNECH and may have some experiences to share. Other members like @char1962 @gulzar @carolc66 @tomewilson have experience with Octreotide injections and can share their stories and tips.
Is the oncologist that you are consulting with experienced in neuroendocrine tumors?
Replies to "Welcome @triveraderubio As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare..."
This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed to be at risk for it. So far, it hasn't developed.
@triveraderubio , good for you to be so thorough in your research and reaching out for as much information as you can get. Hope you will share what you learn with others. Best of luck with the Octreotide!
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Thank you so much for your reply!
The oncologist made me aware that DIPNECH is a very rare condition, and my case is challenging.
He detailed the avenues available for treatment. However, Octreotide would be the first step, for six months, hoping the medication will suppress growth. I am always open to several other opinions as this is so new to me and symptoms are challenging.
Thoughts?