DIPNCEH

OMG. Yes yes yes so much the same. I was told by my pulmonary doctor that it might be DIPNECH but my oncologist does not say I have it. There are multiple tumorets but not growing. I still wonder if the different hospitals are correctly measuring them
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Are you taking a treatment? So interesting, these various symptoms, like GERD! I had it for years and on meds before I ever knew about DIPNECH. About six years ago I had a horrible cough that would not go away despite various kinds of antibiotics and my doctor kept suggesting maybe it was allergies. Finally got tested for allergies and sure enough, it seems. I’m allergic to pretty much everything, so I just assumed That was causing a constant sort of postnasal drip kind of thing. They put me on allergy shots - got better, but the allergy markers never improved when I was retested. So they put me on Fasenra shots once a month, which is mainly to treat asthma, which I do not have, but also seems to work on allergies. I feel the same as before, but my absolute eosinophils went to zero in my blood work. And since that time, I have not even had a cold, or Covid or any other type of serious congestion. It was after all this that I then was diagnosed with the lung tumor and DIPNECH. But now I know it’s all related. I still take an OTC allergy med each day to control the sinus fluid, and although it’s probably not related, it sure feels like it must be. I feel pretty stable and that’s why I haven’t pushed to get on any other treatment. I also have great confidence in the MSK but he is the surgeon, though he is very aware and knowledgeable about NETs and DIPNECH. But he seems to expect that my local pulmonologist will know enough about it to handle my symptoms. And the local guy is very good in general, but if he doesn’t know about DIPNECH, it’s just hard.

I’m glad your allergies have improved and general wellness. I did allergy testing about 25 years ago and I tested positive for something like 72 out of 80 items. I’m allergic to everything, animals, meds, plants, food, you name it. Chemical sensitivity too. But when I started taking the octreotide injections for the lung NETs and DIPNECH, my allergies improved sooo much. It turns out one of the positive side effects is suppressing some histamines. I’m not so sensitive to chemicals and fragrances now and I’ve been able to pet animals for the first time in my adult life after decades of life-threatening respiratory reactions! Life-changing! I love animals! I could only pet hypoallergenic dogs before. I’ve petted zebras and did okay keeping my hands away from my face but I haven’t risked horseback riding (might be pushing my luck) — yet!

That’s great it improved your allergies! In my allergy testing, it looked like I was allergic to just about everything as well. But oddly, I had never really shown allergy symptoms, except for occasional stuffy head. The only thing I ever had a real reaction to was a bee sting, and that was quite severe. In the spring when everything is blooming, I might sneeze like most other people on occasion, but get more often presents as clogged nasal passages. I used to think my little clearing of the throat was from postnasal drip, but now I think it is more related to the DIPNECH. Wishing you well. I assume from your name you live in California? I’ll be looking for a lung net specialist and I don’t think there are any in New Jersey where I live. Had my surgery in NYC MSK. But now I’m thinking a second opinion in Philadelphia since it is within reach. Just have to find a Doctor who will see me.