Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

@hollywood817
So glad your cough and cancer have both improved! Praying you won’t need anymore sucky chemo! 🙂

I 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.

@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!

@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.

@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?

I was diagnosed with non-small cell neuroendocrine lung cancer. Stage 1. I had my right lower lobe of my lung removed. Can anyone tell me in my language, how worried I should be about Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia. I have tumourlets are in my bronchial and each f my lungs. They are slow growing. But have been there for five years. I know I "should not worry". But I am.

Hello @triveraderubio

In a previous post you mentioned that someone at your medical facility had suggested a consultation at Mayo Clinic. I was wondering if that was done.

Are you feeling better now with the monthly injections?

Very interesting , let’s hope they are are able to make excellent progress to help us prolong our lives and deal with this disease .

@rogo @triveraderubio @bcraft @bluedane @amd12 @tatteesmom3 @pattirushing @hopeful33250 @larenn @colleenyoung @kristen3

This is an exciting study with a significant amount of funds donated for our rare DIPNECH w/ or w/o NETS disorder.

Radiologist Dr. Dan Merrick from the University of Colorado is currently studying DIPNECH that has not progressed to carcinoids, DIPNECH that progressed to lung carcinoids and sporadic lung carcinoids without DIPNECH for comparison.

Description of the current DIPNECH research project by Dr. Dan Merrick and others
https://netrf.org/research/molecular-events-underlying-development-and-progression-of-dipnech/
YouTube 5 min. presentation by Dr. Dan Merrick regarding a current DIPNECH study

People notice. Now I actually have had people comment that I don’t cough like I used to. Yay!