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Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (14)

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@jhhaas

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.

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Replies to "That’s great it improved your allergies! In my allergy testing, it looked like I was allergic..."

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me.

Yes, I’m in California. My NETs team is 50 miles away, but after my initial in person visits, I now have video calls with my NETs team. My NETs lung oncologist coordinates with my local oncologist so I receive my monthly octreotide injections locally. Very convenient. I hope you find just the right specialist.