Anyone living long-term with DIPNECH on lungs?

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.!

@jhhaas
I can remember a colleague in the next cubicle 20 years ago telling me my constant throat cleaning was driving her crazy. It was so second nature to me I didn’t even realize I was doing it. Octreotide fixed that too.

@californiazebra do you have any side effects from the Octreotide? I knew it helps the cough, never heard it fixed the throat clearing. I always figured the throat clearing wasn’t bad enough to risk having other side effects, but I always figured I would look into it someday.

@jhhaas
Yes, it has side effects. I believe my throat clearing was because every time I coughed which was all day long, clear mucus (no infection) would be generated so I went through 100 tissues a day spitting out mucus. For me the side effects are worth it because the cough and mucus were life ruining for decades and a real social/work issue. The octreotide stopped both of those and improved my shortness of breath.

For you, it may not be worth it. It causes blood sugar spikes when I eat so I really have to watch my diet and should be on meds for diabetes, but those trigger my rare neuropathy. I already had fatigue, some hair thinning, low blood pressure from two breast cancer meds I had started two months earlier, but feel octreotide added to those issues. It can cause a slow heart rate which is does for me. Everyone's body reacts differently.

I'll never stop taking Octreotide so long as it keeps my cough away. It also slows down lung nodule growth even though they are already slow growing. There has been no significant growth in my 50+ nodules in the 5 years I've been on Octreotide. All I can say it that if you don't like the side effects, you can just stop taking the injections. My endocrinologist told me when another patient he had stopped the injections, his blood sugar went right back to normal. I say no to meds all the time because I can't stand side effects, but in this case it's worth it.

GOOD side effects for me: I was very chemically sensitive to fragrances, cleaning products, etc. and highly allergic to all animals all triggering more coughing and breathing issues. Octreotide reduced my chemical sensitivity (social issue) by 80-90% so I'm no longer allergic to people and their fragrant homes. My friends and family all commented on the change. I can also now pet animals that I love for the first time in my adult life. I'm 67. That has been amazing!!!

I was just diagnosed with DIPNECH after my surgery to remove a Lung NET that I had (misdiagnosed as a hamartoma) since at least 2016. It grew in 2023 & 2024 but I had a chronic cough since at least 2014. I had shortness of breath even prior to that. My surgery was in February and my cough disappeared. I just stated Lanreotide. I am only 55. While I was home recovering, I was able to speak with Dr. Merrick in Colorado. He has been running a study on DIPNECH funded by the NETRF and it should be out soon.

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1 malignant tumor and a few smaller ones. But there are multiple other small lumps and tumorlets on other lobes. Because the malignant one tested as a typical carcinoid tumor, and I have no major problems, I’m not receiving any treatments at this point, just scans every 6 mos. I am only 1 yr post op and will have my 2nd scan next month. I do not have a net specialist, although I did have my surgery at MSK, New York. After this next scan, I may try to get a second opinion in Philly to be sure they concur. So far my main symptoms are shortness of breath on exertion, such as stairs, hills, or walking too fast. I try to walk every day. Forgot to mention I am 75. I do not have the coughing that so many have, but I do often clear my throat from deep inside my lungs. But it’s not really a problem for me. I feel grateful this was even found, because the tumor was incidentally found while I was having a routine heart scan. While it was very disconcerting to realize my lungs have this problem, I’m learning that people can live a long time with it, and there are treatments available if needed. Best wishes to you.

@nvent5
Good to hear your cough is gone. And good to hear about Dr. Merrick’s study. Cleveland Clinic also has a DIPNECH program. It’s rare but likely underdiagnosed since most doctors have never heard of it so most of us were misdiagnosed for years. More awareness means people will be diagnosed and helped faster. The more prevalent it is, the more research dollars will be spent. That’s good news for all of us DIPNECHians. 😊

@jhhaas Have you ever had facial or neck flushing? I work all over a campus practically running. I knew something was wrong when my cheeks started getting red, and I too was slowing down especially on stairs. I'm not coughing any more, but I think that is because I am on the shots. Still getting the red cheeks though. Interesting how NETs sometimes presents.