Anyone living long-term with DIPNECH on lungs?

@nannybb
Supposedly, octreotide can help with that. Maybe over time or a different dose? My flushing tends to happen more at night and the whole right cheek. I was told octreotide can also cause it. Was it happening before octreotide?

@californiazebra Zebra, the surgeon wants me to try the I.M. dose when I'm finished with 3 times a day. I'm really not worried, worried about it. I hate the flushing before surgery, and after. It contunued with the shots. I'm actually more upset that no one is concerned about my not having CAT scans. I just need an oncologist to be in charge of putting my treatments all together. Hope YOU are feeling better. 💕

@nannybb
I agree. Scans are important. I hope you can get a good oncologist to manage your case soon. You’ll like doing the shot just once every 28 days.

I’m feeling good today. Thanks for asking.

@californiazebra Thanks Zebra. Happy Mother's Day 🌹

@californiazebra I went to the Pulmonology. He is having to do Flonase, an allergy pill, and an inhaler, both Symbicort and Albuterol. None of them stops the coughing. I am having a Pulmonary function test next month and a PET CT Dotatate to see if I have any cancer that might of returned in the lung.

@mbarreras
Good luck. So frustrating for you. I was told with DIPNECH, it’s not the nodules we can see causing the cough, it’s the hundreds of tiny nodules in the airways that are too small to see on a scan that cause the symptoms. Hope they figure it out. 🙏

That is what they told me too.

Hi, all. Last year I was dx with DIPNECH after a biopsy. Started Lanreotide in Oct 25 & my cough improved. It did not go away & still hasn't stopped nearly one year later. My PFT numbers had been on the upswing & my lung functions improved. However, in May of this year, my PFT numbers started to decline. Additionally, I was taken to the ER after I was unable to catch my breath, couldn't speak in a complete sentence bc of breathlessness, & had shortness of breath. I had "air hunger". The ER dr had me do a 6 minute walking test but I wasn't able to walk my normal pace/speed. Once the RT increased the pace of walking I collapsed & my O2 dropped to 88-89%. However, it quickly rose & went back to normal (98-99) once I was placed in a wheelchair. I recovered but it took sometime & my ability to walk a normal pace has never returned. I walk so slow & will have ambulatory desaturation if I walk the pace of a normal person. My PFT numbers have continued to decline. But my pulmonologist also says that my numbers are varied so I'm not sure he considers the numbers reliable or relevant. A CT last year showed I had 2-4 small nodules. A CT a month ago showed I now have over 50 nodules. Is it just me, or did the nodules increase in a relatively short time? I've now been referred to a lung transplant team for evaluation. Lanreotide has helped my cough. But it's never gone away & I do still have coughing "fits" & SOB. Can someone please tell me if you've had a similar experience? My pulmonologist said I'm a good candidate for a transplant, though I'm on the early side of needing one. And I'd get a double lung transplant. He's not sure lanreotide is working bc I also take pregabalin, gabapentin, & now tramadol to control the cough in addition to the injection I get every 28 days. I'm pretty exhausted at this point. I'm in pulm rehab now as well. Lung transplants for DIPNECH is so rare that I'm surprised (and a little afraid) that it seems like, eventually, I'll need a transplant. Is there anyone who can weigh in?

@kdubbs
I’m so sorry to hear about this progression. Certainly not what you were hoping to hear. I was really hoping the lanreotide would work for you the way octreotide has worked for me. Did they say how large all the nodules are? If tiny, I’m wondering if you had those 50 before but too small to show up on the last scan. Maybe they grew just enough to be visible? Or maybe the scanner used this year is a step up from the one last year? Until now, I didn’t know anyone else who had 50+ visible nodules like I do.

I was told that it’s not the nodules we can see that cause the respiratory issues but the hundreds or thousands of microscopic nodules that line our airways that cause the symptoms in DIPNECH. The real concern is how much trouble you’re having with breathing. I wonder if you may have more scarring than I do which might not only cause more breathing issues but maybe it’s stopping the lanreotide from being effective? Just thoughts.

I’m so sorry you are facing a possible transplant but relieved that they feel you are a good candidate for transplant as an option. Feel free to reach out privately if you want to talk. I understand DIPNECH and how frustrating it can be. You’re in my prayers. ❤️

Hi! So glad you responded. I’ll message you. 🙂