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209 total results
Comments (199)
Tom, that’s frustrating about your incidental findings too. I hope both conditions were successfully treated. I...
https://connect.mayoclinic.org/comment/958681/
NETS & DIPNECH.
It seems my first lobectomy 6 years ago was dipnech related nets, my second lobectomy in...
https://connect.mayoclinic.org/comment/1229468/
my first lobectomy 6 years ago was dipnech
Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...
https://connect.mayoclinic.org/comment/987810/
Hi @ocean3131
I also have DIPNECH ... need someone who has treated other DIPNECH ... DIPNECH is rare.
Hi - some people do have a chronic cough with DIPNECH. I do not have a...
https://connect.mayoclinic.org/comment/1250753/
people do have a chronic cough with DIPNECH ... That’s when they also diagnosed DIPNECH ... There are people with DIPNECH who have
Hello @californiazebra, I really appreciate the chronology that you provided as you have been dealing with...
https://connect.mayoclinic.org/comment/1179350/
you have been dealing with lung NETs/DIPNECH
I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...
https://connect.mayoclinic.org/comment/1172007/
I have also been diagnosed with DIPNECH
@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...
https://connect.mayoclinic.org/comment/976633/
and reduce any symptoms caused by DIPNECH
I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET...
https://connect.mayoclinic.org/comment/1108711/
I was Dx’d with DIPNECH post op after ... The more I read about DIPNECH, the more
@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...
https://connect.mayoclinic.org/comment/1024996/
as I do so he can still treat your DIPNECH ... The DIPNECH community is very small
Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...
https://connect.mayoclinic.org/comment/1070950/
I have DIPNECH and lung NETs (typical ... Based on symptoms, I’ve had DIPNECH ... greatly improved so was clearly tied to DIPNECH ... 65 and I don’t expect to die from DIPNECH
This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed...
https://connect.mayoclinic.org/comment/772509/
wasn't actually diagnosed with DIPNECH
@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...
https://connect.mayoclinic.org/comment/1143685/
people can live a very long time with DIPNECH
Thank you for your response. I too have the carcinoid tumors and DIPNECH. Just getting started...
https://connect.mayoclinic.org/comment/1160949/
too have the carcinoid tumors and DIPNECH
While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living...
https://connect.mayoclinic.org/comment/1070929/
While I haven’t been diagnosed with DIPNECH
Sorry to hear about your mom. I too have been looking for a DIPNECH Specialist, preferably...
https://connect.mayoclinic.org/comment/1065374/
I too have been looking for a DIPNECH
@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...
https://connect.mayoclinic.org/comment/1033637/
MIGHT YOU HAVE DIPNECH? ... I also have DIPNECH which is an even ... that makes me wonder if you also have DIPNECH ... That is another sign of DIPNECH. ... couple hundred documented cases of DIPNECH
Hi @californiazebra, This is my firs post here, but my diagnosis and treatment is very similar...
https://connect.mayoclinic.org/comment/1071013/
octreotide during the procedure, but my DIPNECH
I was diagnosed with DIPNECH at National Jewish Health (NJH) 3/23. I've been coughing and being...
https://connect.mayoclinic.org/comment/906680/
I was diagnosed with DIPNECH at National ... neuroendocrine cancer similar in pathology to DIPNECH
I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...
https://connect.mayoclinic.org/comment/1162603/
with a VERY rare lung disease called DIPNECH
If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...
https://connect.mayoclinic.org/comment/1209090/
of various possibilities, including DIPNECH ... They were able to confirm the DIPNECH ... attentive, but I had to tell him what DIPNECH
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