Anyone living long-term with DIPNECH on lungs?

Hi rogo yes I live with diagnosis of DIPNECH & lung neuroendocrine cancer (Typical tumor)confirmed by lower left lobectomy 2012 ..so long term. The cough which was totally exhausting and so severe causing umbilical hernia did quiten down somewhat after surgery however gradually became chronic again. I was put on lanreotide injection every 28 days initially, certainly helped calm things down. I experience flushing more often now and my injection is 21 day intervals now to try help with that. I’m 66, live in Ireland

I'm 65, in 2016 I started having a cough that would not go away. I was diagnosed with Valley fever, which is something you can get in Arizona, although I had 3 tests that were always negative. I had MRs done that showed I had several spots on my lungs, but they were small, and the doctors were not concerned with them. Last year I was told I had carcinoid tumors, two small ones that had grown over time were removed, which was cancer.
I have had the chronic cough since 2016. Monday, I was told that I might have DIPNECH Lung disease, which would be the cause of the chronic cough and the carcinoid tumors. I’m going to a Pulmonologist tomorrow. I feel hopeful.

@mbarreras
Nodules left behind by valley fever was one of the incorrect guesses doctors had when they first discovered my 50+ nodules. I think your life is going to change for the better if they start you on octreotide or lanreotide. Keep us posted.

@milly1
I was having some issues with flushing on one side of my face at night but discovered it was a histamine intolerance (most likely due to NETs or octreotide) so I just cut out the fruits causing it and it stopped. Trial and error.

@mbarreras Hi and welcome to Mayo Connect. I too have lung scarring that has been attributed to valley fever. I also am a resident of Arizona. @californiazebra is the most knowledgeable person that I know in regards to DIPNECH. Her input, as well as others, will be a tremendous help to you as DIPNECH is very rare. Please share how your pulmonologist appointment goes. We are here to help.

@milly1 hi 😊just seen your from Ireland my first time seeing someone from Ireland on this ❤️

@gig666 what she’s talking about is the rare lung disease called DIPNECH. That’s dance for diffuse idiopathic pulmonary neural endocrine.cell hyperplasia.
These turn into carcinoid tumors which are a type of neuroendocrine cancer.
I have that. I just got diagnosed last year but I’m 57.

@leahfromsa Hi and welcome to Mayo Connect. What led up to your diagnosis? How are you feeling?

@leahfromsa
I too have DIPNECH, was diagnosed in 2018 after I had my right middle lobe removed due to growing nodules ( tumours) , pathology found asbestos plaque ( that's another story) and dipnech. Then in 2024 I had my top right lobe removed due to , again, growing nodules. I'm nearly 77 so have obviously lived a long time with this disease. The coughing and shortness of breath i can tolerate. Good luck

I had a RML lobectomy in Oct 2023, with further dx of DIPNECH. I go for my 6 mos CT scan next week. So far there is no change. I had three tumors in my right middle lobe, and one had apparently showed some malignancy on the PET scan, which is why they did the surgery. All this was found incidentally when I had a scan of my heart. So I feel grateful it was found. I do not have the dreaded cough thankfully, I do clear my throat a lot, and I have shortness of breath on exertion, which I think a lot of of us have. I just turned 77. I’m assuming I had this for a long time and never knew it. I understand the concern, but I have learned this is my new norm. Best wishes to you. I am not on any specific treatment for it, but I do get Fasenra shots which is made for eosinophilic asthma but also used for some allergies, which is why I take it, all prior to the lung surgery/ tumors. It seems to help restrict congestion caused by eosinophils so it is inadvertently helping my symptoms I think. I have just realized this is my new norm and have adapted. Wishing you well.!