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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
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.
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@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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3 Reactions@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.
@triveraderubio
I had to go back and read through this entire thread to remember what you and I discussed in the past. I see I told my story back in March so won't repeat it all. Interesting about your side effects that are different from mine though. The key ones for me are low blood pressure, low heart rate, fatigue and hair loss. Could be others, but I started on long-term breast cancer meds two months before I started octreotide so sometimes it's hard to assign blame to the right med. I will say the side effects are worth it to me because of the respiratory symptom improvement.
I just didn't realize how much my lung sensitivity to everything was due to DIPNECH. I thought it was 100% due to allergies, asthma and fragrance/chemical sensitivity and the limitations were overwhelming and isolating for me and annoying to those around me. I still have some issues, but they have really improved. Now, I can go to a movie theater, church, concert, any group activity without coughing from scented products people are wearing (no mask needed). I can go for a walk with someone without gasping for breath over their scented products. I can be part of society again. With a mask on, I was just able to pet animals on a drive through safari zoo and petting zoo as well as my son's shedding dogs for the first time in decades. Amazing! A mask was not sufficient in the past. And before the pandemic, you would have looked like a weirdo or someone with a disease if you wore a mask in public. Post-pandemic, I can wear a mask to pet animals or on a plane that has scents and animals without more than an eye roll. Yay!
I just saw my son for the first time in two years and he was shocked not only at my lack of coughing, but he said normally when he would get in the car I would question every product he was wearing to determine which one was responsible for my coughing fit. Win-win!
As far as the lung NETs/DIPNECH progression, in the 2.5 years I've been taking the octreotide, they have seen no significant growth in my 50+ lung tumors. Yay! So I will continue octreotide injections despite the side effects. I hope octreotide is as life-changing for other DIPNECH sufferers as it has been for me. They did tell me octreotide may become ineffective for me at some point, but not enough data for DIPNECH due to its rarity to predict when. I'll hope for the best!
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3 ReactionsI have liverNET cancer. I was diagnosed almost one year ago. I had 4 intense chemo treatments and receive lanreotide injections every 21 days. I had a terrible cough which we believe was due to my diaphragm rubbing against my enlarged liver. 8 weeks of almost no sleep. Between the chemo and lanreotide the cough went away and hasn’t returned. My cancer has been reduced by over 50% and just had a CT scan which will determine next steps. Possibly no chemo for a while…which would nice because chemo sucks! Stay strong! Wishing you all the best in your journey.
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1 Reaction@hollywood817
So glad your cough and cancer have both improved! Praying you won’t need anymore sucky chemo! 🙂
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2 ReactionsI am having my lower right lobe removed on Nov. 21
I have 2 typical carcinoids..
Can you tell me what to expect for the surgery.
I will have it done at Emory University hospital in Atlanta.
I met a lady through a NETs organization who told me she had a lung lobe removed due to a 9 cm NETs tumor. She was 70 and is now 80 and has had no additional NETs issues. She just has a CT scan once a year. Also didn’t have any respiratory issues from the surgery and she feels great. I’m very hopeful that those of you with a single tumor or tumors in the same lobe will be one and done with surgery and go on to be NETs free for life. Prayers for you that you’ll heal quickly.
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2 ReactionsThank you!
I am 72. They found these carcinoids on CT for colon cancer.
I had colon surgery and a round of chemo.
Now having lung surgery.
I really would like to communicate with someone who had the same surgery.
The colon surgery was no problem .. out of hospital the day after surgery.
I think this one is going to be harder.. don’t like idea of chest tube! 😩
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3 ReactionsI 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.
Hello @ocean3131 and welcome to the NETs support group on Mayo Connect. I'm sorry to hear of your new diagnosis. A new diagnosis such as this can be concerning and it is good to meet wth others who are on this same journey. We have another discussion group that deals with Dipnech. Here is the link,
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
As you read the posts you will meet others such as @triveraderubio @amd12 @rogo @larenn. Feel free to read their posts and to ask questions and/or express your concerns. The members of Connect are eager to support each other.
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
Please share, as you are comfortable doing so, if there were other symptoms other than the persistent cough that alerted your doctors to diagnosis this issue. Did it take a long time to be diagnosed?