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Public Support Group 255 total results
Comments (240)
Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH...
https://connect.mayoclinic.org/comment/976431/
Hi Marcia, I have DIPNECH and currently I only use inhaled steroid (fluticasone/salmatrol) and it has...
https://connect.mayoclinic.org/comment/1173763/
Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI...
https://connect.mayoclinic.org/comment/1193098/
No I am not. My pathology after my lung surgery was sent to Mayo, and that...
https://connect.mayoclinic.org/comment/1288895/
@californiazebra A couple typo corrections in my message above. That should have said I have typical...
https://connect.mayoclinic.org/comment/1427992/
@kristin3 -- typical carcinoids are the best kind to have. They are the slow growing kind....
https://connect.mayoclinic.org/comment/849473/
Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300...
https://connect.mayoclinic.org/comment/1108887/
@gram26 Hello Jane and welcome to the NETs support group on Mayo Connect. I so appreciated...
https://connect.mayoclinic.org/comment/881787/
@jessie1990 I want to note that after reading so many stories of both GI NETs and...
https://connect.mayoclinic.org/comment/1427890/
Hi @kole03 I hope you’re feeling well post lobectomy. You need to be followed by a...
https://connect.mayoclinic.org/comment/1328815/
@mlbschuler I am so excited to hear you are seeing Robert Ramirez! He seems the most...
https://connect.mayoclinic.org/comment/1012065/
@kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long...
https://connect.mayoclinic.org/comment/1394217/
Slow growing is good! How large is the largest tumor? It makes me wonder if you...
https://connect.mayoclinic.org/comment/1081836/
Hello @kdubbs I see that @californiazebra and @jlsgt have already introduced themselves to you and shared...
https://connect.mayoclinic.org/comment/1392077/
Hi @breck You’ve been through a lot. Sorry to hear they did not get it all....
https://connect.mayoclinic.org/comment/1169807/
@grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment....
https://connect.mayoclinic.org/comment/1010744/
If anyone out there can recommend a Dr. in the Florida area that is very familiar...
https://connect.mayoclinic.org/comment/965239/
Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....
https://connect.mayoclinic.org/comment/1220927/
I had my middle right lobe and a part of top lobe removed in 2018, pathology...
https://connect.mayoclinic.org/comment/1287231/
Had carcinoid tumor removed from lung last year, stage 1 cancer, lymph nodes good. Prior to...
https://connect.mayoclinic.org/comment/844635/
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