DIPNECH diagnosis. Has anyone had radiation?

Hi - some people do have a chronic cough with DIPNECH. I do not have a real cough, but I am very frequently sort of clearing my throat. I was doing that before my diagnosis and surgery also. I also experience shortness of breath on exertion, which also was happening before my diagnosis of surgery. My PCP tested me for allergies, which were positive, and he put me on allergy shots, and ultimately on Fasenra, which is supposed to be for asthma, but can be used for allergies as well. Since then, the tumor./s were found in incidentally and I had my right middle lobe removed. That’s when they also diagnosed DIPNECH. Interestingly, while I am very glad to have had the surgery, my original symptoms of clearing my throat and of shortness of breath and exertion have not changed. I continue to take the allergy shot though because it seems to be keeping all other sicknesses away. If the symptoms get worse or my scans start showing changes and growth, I think then I would get a second opinion and more strongly consider one of the treatments available. There are people with DIPNECH who have very bad coughs for example. Best wishes to you. This is quite a journey. I can look back and pinpoint when the symptoms became a problem, and it was probably five or six years before I was diagnosed. But I think my two symptoms were developing even before then.

In addition to my chronic cough, I had issues with mucous and shortness of breath upon exertion. I also have a ton of allergies. The octreotide has significantly reduced all of those. Helping my allergies was a surprise. I’ve been able to pet animals (other than hypoallergenic) for the first time in my adult life. I love animals! It has also really improved my chemical sensitivities. Even though it has side effects, Octreotide has been a miracle drug for me.

Wow! That’s amazing! This is what Fasenra has done for me. It has been I think four years since I’ve been on that, and I have not been sick with a cold or flu, never even had Covid. Apparently that works by reducing the absolute eosinophils. Prior to this, I was often getting sinus headaches, and coughs/ chest infections. It’s good to know that Orectotide did that for you, just in case I ever need to go on it.