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Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (16)
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Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated Imfinzi as next treatment but my PD-L1 score was zero so I declined. Have been in "remission/reprieve" for almost 2 years.
Replies to "Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated..."
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Hello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you were diagnosed about two years ago. Is my understanding correct?
We have a number of Connect members who had NETs in the lungs. Here are some other discussions about this:
--Typical Carcinoid Tumor in the Lungs
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
--Atypical Carcinoid Tumor of the Lung
https://connect.mayoclinic.org/discussion/carcinoid-tumour/
--Biopsy showed DIPNECH
https://connect.mayoclinic.org/discussion/biopsy-showed-dipnech/
I see that you have had radiation as well as chemo. As this is your first post, please share, as you are comfortable doing so, a little about how you were diagnosed. Were you experiencing breathing difficulties or a chronic cough?