Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,009 total results

Comments (931)

I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on...

https://connect.mayoclinic.org/comment/1286484/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2025

I have we'll differentiated, grade 2 NET in tail of pancreas and spread to liver. Have...

https://connect.mayoclinic.org/comment/1266440/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@zacharycat My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well...

https://connect.mayoclinic.org/comment/1537920/

Discussion: Is anyone taking cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29 10:59am

I have functioning gastrinomas the lanreotide helped my symptom control significantly and I started right after...

https://connect.mayoclinic.org/comment/1296743/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

Interesting I never had any symptoms until I was put on Lanreotide for growth and like...

https://connect.mayoclinic.org/comment/1169907/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

@ricki8- I have been on Lanreotide for 2 yrs on March 10 :). My gallbladder was...

https://connect.mayoclinic.org/comment/1255238/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me...

https://connect.mayoclinic.org/comment/829631/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

My pain was caused by a statin I was taking for glucose control. The doctors also...

https://connect.mayoclinic.org/comment/1094448/

Discussion: Pain in hands, arms and shoulders with pNET stage 4

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2024

I guess I’ve been blessed had my first Lanreotide shot February 16th, no side effects, and...

https://connect.mayoclinic.org/comment/826436/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

Continued tumor growth while taking lanreotide injections, so was switched to oral chemo, Everolimus. CT scan...

https://connect.mayoclinic.org/comment/1439309/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

I had bloating with the first 2 lanreotide injections. Took gasX. Haven’t had any bloating with...

https://connect.mayoclinic.org/comment/875273/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2023

@dbamos1945 - so far my disease is stable, no new growth after 16 months on Lanreotide....

https://connect.mayoclinic.org/comment/1109538/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

I have not had PRRT, still waiting to see if I am accepted to the trial....

https://connect.mayoclinic.org/comment/829736/

Discussion: COMPOSE PRRT Lu Edotreotide Trial Study

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

I have been on Lanreotide ( every 4 weeks) for 2+ yrs now for pNET with...

https://connect.mayoclinic.org/comment/1279952/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2025

@swede79: I thought about you today, hoping that your oncologist meeting was informative and your 1st...

https://connect.mayoclinic.org/comment/1252915/

Discussion: Is there a particular diet to have when starting Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

@fraaseo Thank you for sharing. My second surgery was also cytoreduction with removal of 92 cm...

https://connect.mayoclinic.org/comment/1556271/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21 3:12pm

Hello @marciamiller and welcome to Mayo Connect. I am glad that you found this forum. DIPNECH...

https://connect.mayoclinic.org/comment/1163824/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2024

I got grade 2 stage 4 and lanreotide injections did not work but prrt did. Had...

https://connect.mayoclinic.org/comment/1352316/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2025

Do you have neuropathy in addition to neuroendocrine tumors? Did you have the neuropathy before starting...

https://connect.mayoclinic.org/comment/1018230/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2024

I have a neuroendocrine pancreatic tumor. I have had two treatments with Lanreotide. I have so...

https://connect.mayoclinic.org/comment/874960/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

Follow

8220

10 minutes ago

Digestive Health

Follow

18380

46 minutes ago

Pancreatic Cancer

Follow

3579

2 hours ago

Follow

10093

2 hours ago

Cancer: Managing Symptoms

Follow

5693

3 hours ago