Neuroendocrine Tumors (NETs) Support Group

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Comments (689)

We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a...

https://connect.mayoclinic.org/comment/1218822/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

Thank you. My husband still continues to stay positive. You are correct the PRRT is suppose...

https://connect.mayoclinic.org/comment/1135141/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Sorry to hear this, one question was you neuroendocrine tumor "well differentiated or poor differentiated"? I...

https://connect.mayoclinic.org/comment/1289751/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

After my 2nd PRRT I had a MRI with contrast of my head and spine the...

https://connect.mayoclinic.org/comment/1142569/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Had appts at Mayo this week and CT scan shows growth in multiple liver tumors. Switching...

https://connect.mayoclinic.org/comment/771583/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2022

CAP/TEM is a pill version of chemo. PRRT - is a radiation based treatment that attacks...

https://connect.mayoclinic.org/comment/1106493/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

I was misdiagnosed ten plus years. When i was it was by someone in gi. The...

https://connect.mayoclinic.org/comment/1540847/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

I live in Canada, wheee they don’t do this test. I was meant to start round...

https://connect.mayoclinic.org/comment/1514999/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26 10:08am

This site was given to me at Mayo's in Mn.. I am sooo glad to be...

https://connect.mayoclinic.org/comment/134546/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2019

@tomrennie You have been on chemo 3.5 years. That is a long time. How do you...

https://connect.mayoclinic.org/comment/1519307/

Discussion: New spots showing up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4 9:32am

After being on Ocreotide for almost 2 years a few of my tumors were still growing,...

https://connect.mayoclinic.org/comment/1346238/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2025

PNEt. Had capTem, lanreotide, everolimus, prrt, CapeOx and now Keytruda. Been going strong for 6.5 yrs...

https://connect.mayoclinic.org/comment/1307403/

Discussion: Keytruda for neuroendocrine cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2025

I finished 4 PRRT treatments in January 2022 with significant reduction of tumor burden in liver....

https://connect.mayoclinic.org/comment/1354582/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2025

Hello @dbamos1945 I just noticed that @caitrina's post is in the liver debulking group, however, she...

https://connect.mayoclinic.org/comment/780507/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 3, 2022

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery...

https://connect.mayoclinic.org/comment/1048670/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

I’m not sure why things are offered in a different order Some things I read say...

https://connect.mayoclinic.org/comment/956820/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2023

I’m going to be starting PRRT Lutathera treatment in August I’m concerned about the radiation part...

https://connect.mayoclinic.org/comment/1110526/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

Thank you so much for replying I will be starting on 5 mg If that doesn’t...

https://connect.mayoclinic.org/comment/943351/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

I have a small just discovered carcinoid tumor on my mesentery, considered in operable would you...

https://connect.mayoclinic.org/comment/1313187/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2025

Hello @sophiarose You posted about a week ago about the swelling in your arm following your...

https://connect.mayoclinic.org/comment/1159633/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2024

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