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Public Support Group 255 total results
Comments (240)
DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...
https://connect.mayoclinic.org/comment/1361481/
@spaztwobe I feel your frustration. It took 12 years to correctly diagnose my lung NETs and...
https://connect.mayoclinic.org/comment/1315349/
I was diagnosed with DIPNECH at National Jewish Health (NJH) 3/23. I've been coughing and being...
https://connect.mayoclinic.org/comment/906680/
It seems my first lobectomy 6 years ago was dipnech related nets, my second lobectomy in...
https://connect.mayoclinic.org/comment/1229468/
I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...
https://connect.mayoclinic.org/comment/1162603/
Hi - some people do have a chronic cough with DIPNECH. I do not have a...
https://connect.mayoclinic.org/comment/1250753/
AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare...
https://connect.mayoclinic.org/comment/661597/
Hello @grec, I'm sure you have a lot of questions about this new diagnosis. On Connect,...
https://connect.mayoclinic.org/comment/1048387/
Welcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation...
https://connect.mayoclinic.org/comment/1054839/
Thank you so much for your reply! The oncologist made me aware that DIPNECH is a...
https://connect.mayoclinic.org/comment/772281/
I have typical carcinoids and DIPNECH (50+ nodules) so they can't remove them. The largest one...
https://connect.mayoclinic.org/comment/1522918/
Hi - I am also 75 and have DIPNECH, diagnosed Oct 2023 when I had my...
https://connect.mayoclinic.org/comment/1285320/
If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...
https://connect.mayoclinic.org/comment/1209090/
@calimomma Hard to answer your question because you have a lot going on and I’m not...
https://connect.mayoclinic.org/comment/1232671/
Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...
https://connect.mayoclinic.org/comment/937205/
@markmark007 I take octreotide injections for lung NETS and DIPNECH. My 50+ lung tumors are very...
https://connect.mayoclinic.org/comment/966952/
@triveraderubio I had to go back and read through this entire thread to remember what you...
https://connect.mayoclinic.org/comment/962925/
Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster...
https://connect.mayoclinic.org/comment/867775/
Surgery to remove the malignant carcinoid (and right middle lobe) was on Oct 2. Surgeon wants...
https://connect.mayoclinic.org/comment/976626/
I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues...
https://connect.mayoclinic.org/comment/1199060/
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