Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,009 total results

Comments (931)

Welcome to the NET site! Hope you find the group helpful and supportive. I don’t have...

https://connect.mayoclinic.org/comment/851281/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

No meds before Lanreotide. I have had yearly CAT scans. The annual scan this year showed...

https://connect.mayoclinic.org/comment/1171345/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Thanks for the update, @spinhead. I hope that you will post again after your Gallium Scan...

https://connect.mayoclinic.org/comment/940504/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Thank you I did Lanreotide had bad side effects had to stop I was ok on...

https://connect.mayoclinic.org/comment/830413/

Discussion: Stopping Octreotide???

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

So sorry this has happened. I have had some Lanreotide injections that I thought were too...

https://connect.mayoclinic.org/comment/1403848/

Discussion: Lanreotide shot given too fast, any side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2025

Hi! I have been treated with Ipsen Lanredtide until 12/25. In January and February I have...

https://connect.mayoclinic.org/comment/1508457/

Discussion: Neuroendocrine Lanreotide (Advanz Pharma) Problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17 8:54pm

Also- he did develop mild diabetes after the pancreas surgery. The use of lanreotide has contributed...

https://connect.mayoclinic.org/comment/978538/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2023

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First...

https://connect.mayoclinic.org/comment/914810/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

I am new to this group and have been getting Lanreotide since May of 2022. I...

https://connect.mayoclinic.org/comment/818984/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2023

I too have a lot of itching and as weird as it sounds my ears itch...

https://connect.mayoclinic.org/comment/1386144/

Discussion: Why do almost none of the sites online mention severe itching?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

We aren't doctors, but generally NET is slow growing in most cases, and the key is...

https://connect.mayoclinic.org/comment/859028/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

@ teresa33250: Lanreotide 28 day injections- I have taken them monthly since 10/21. My main concern...

https://connect.mayoclinic.org/comment/1249827/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

That's great news! Thanks for updating us. I know you indicated that she has an oncologist...

https://connect.mayoclinic.org/comment/1360503/

Discussion: (Spouse)Supports Stage 2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2025

My husband does the Lanreotide 120 every 28 days. Medicare B covers 100%. He then did...

https://connect.mayoclinic.org/comment/1134950/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her...

https://connect.mayoclinic.org/comment/839791/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2023

@mimighosh I'm curious as to how your husband is currently reacting to the Lanreotide injections and...

https://connect.mayoclinic.org/comment/1447741/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2025

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was...

https://connect.mayoclinic.org/comment/1208804/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

Hello @mimighosh, I'm glad that you posted an update about your husband's treatment and that you...

https://connect.mayoclinic.org/comment/1295553/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then...

https://connect.mayoclinic.org/comment/1269466/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

After what I learned in my second surgery, it should have never been done laparoscopically. All...

https://connect.mayoclinic.org/comment/1555201/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20 10:36am

Digestive Health

Follow

18384

5 minutes ago

Follow

8223

18 minutes ago

Pancreatic Cancer

Follow

3580

25 minutes ago

Follow

1889

2 hours ago

Follow

10097

6 hours ago