Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

Sometimes it works to stabilize tumor growth sometimes it doesn’t! I too have pancreatic primary metatastic...

https://connect.mayoclinic.org/comment/1323715/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2025

Hi! I have probably had lung nodules for twenty or more years. Three years ago my...

https://connect.mayoclinic.org/comment/1163694/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27, 2024

I am asking my primary care doctor the same question today. I will get back to...

https://connect.mayoclinic.org/comment/1118192/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2024

Many thanks for your response. I offer the following brief summary of Sharon's NET history. 1....

https://connect.mayoclinic.org/comment/744920/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so...

https://connect.mayoclinic.org/comment/948632/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2023

The carcinoid heart disease caused a lot of swelling to the point it was putting pressure...

https://connect.mayoclinic.org/comment/911346/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

I agree. Im 55yrs old. I was 185lbs when i started my once a month Lanreotide...

https://connect.mayoclinic.org/comment/860207/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2023

Teresa: My wife Sharon has recently had a C/T which showed additional lesions in the liver...

https://connect.mayoclinic.org/comment/800327/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2023

Thanks for your post. Can you tell me how old your wife is please? I had...

https://connect.mayoclinic.org/comment/1075303/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2024

Thank you so much for this wealth of information. I do have respiratory issues. However, since...

https://connect.mayoclinic.org/comment/1532989/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 3:06pm

Hang in there @ahilker! I had similar situation, no primary site discovered during surgery, pNET debulked,...

https://connect.mayoclinic.org/comment/866356/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

Yes … 19 years since first diagnosis post-appendectomy (or what had been suspected as an appendicitis...

https://connect.mayoclinic.org/comment/820107/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

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

Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers....

https://connect.mayoclinic.org/comment/134280/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2019

Rogerstc, I don't think you've had a recurrence per se. I think you have Neuroendocrine cancer...

https://connect.mayoclinic.org/comment/1255707/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)....

https://connect.mayoclinic.org/comment/1035345/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

Good morning! I too have similar experience with hairloss. I have been on Lanreotide for 11...

https://connect.mayoclinic.org/comment/1009300/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

Hello, ginnym3! I went to debulking surgery for a large pancreatic tumour (20×16 cm) with liver...

https://connect.mayoclinic.org/comment/966535/

Discussion: Any tips about Cytoreductive, debulking Surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2023

Hello @matt2024 ! I too have pNET but with liver metastases. Had distal pancreatectomy ( with...

https://connect.mayoclinic.org/comment/1082347/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2024