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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Posted by triveraderubio @triveraderubio, Nov 10, 2022

Good morning. My prayers and blessings to all on this page of interest.

This is a new journey for me. Underwent a lung biopsy due to chronic cough, shortness of breath and many long lasting episodes of bronchitis. The biopsy revealed Carcinoid Tumorletts (slow growing cancer) related to DIPNECH. I always thought my chronic cough was due to asthma, but it was not. I did research to understand the diagnosis on this very rare disease; especially in the lungs.

After the biopsy, I was prescribed Trelegy Ellipta and steroids, but these medications did not suppress symptoms. I searched for an Oncologist who studied my case for a while, discussed amongst other colleagues, and ran a series of tests. After several discussions of alternative treatment, I am to start treatment with Octreotide Injection every 28 days.

Hopefully this will suppress the cell growth and improve symptoms.

Be Blessed and Remain Safe.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 28, 2023
In reply to @ocean3131 "I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who..." + (show)
@ocean3131

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

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Hello @ocean3131, as @hopeful33250 mentioned, I have moved your discussion and combined it with an existing discussion titled, "Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH" - https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/. Here you can meet other members discussing their diagnosis of DIPNECH.

REPLY
Zebra | @californiazebra | Dec 28, 2023
In reply to @ocean3131 "I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who..." + (show)
@ocean3131

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

Jump to this post

Hi @ocean3131
I also have DIPNECH and you can read my other posts for more details but coughing constantly for 30 years was a nightmare. Also coughed up clear mucus all day and had shortness of breath issues. I’ve been taking monthly octreotide injections for almost 3 years now and it has been life changing in stopping the cough and mucus and improving the shortness of breath. It was like I had bronchitis for 30 years straight. It annoyed me and everyone around me so we’re all thankful for octreotide.

Have you seen a NETs specialist? I was told the symptoms are not caused by the tumors we can see but by hundreds or thousands of tiny nodules that line my airways and don’t show up on the CT scan. You need someone who has treated other DIPNECH patients. My case is managed by a multidisciplinary lung NETs team at UCLA but I receive the injections at my local breast oncology office (I have breast cancer too) so I don’t have to drive to LA for them. Very convenient. I have video calls with my UCLA lung team. You came to the right group. DIPNECH is rare. Feel free to send me a private message as well.

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