Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

Yes the bloating in my case was from lanreotide and Ocreotide My stomach is perfectly flat...

https://connect.mayoclinic.org/comment/862879/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2023

My gluten-free diet after a Celiac Disease diagnosis shortly after starting Lanreotide injections every 6 weeks...

https://connect.mayoclinic.org/comment/1291409/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 27, 2025

@retiredinkazoo - I have similar case - huge pNet on the tail ( 20x16 cm) plus...

https://connect.mayoclinic.org/comment/1075652/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2024

I had my pancreatic cancer surgery in Mar 2020 and 5 months ago my scan showed...

https://connect.mayoclinic.org/comment/937482/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

The lanreotide injections did not do what the oncologist had hoped for my sister. They are...

https://connect.mayoclinic.org/comment/1098968/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 4, 2024

Hello @joy5877 and welcome to the NETs support group on Mayo Connect. I'm pleased that you...

https://connect.mayoclinic.org/comment/940369/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

If you don't mind sharing, is your husband currently getting treatment for the NETs? I also...

https://connect.mayoclinic.org/comment/1311557/

Discussion: Any one have experience with Dr J Maxwell (surgical oncologist) at MD

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2025

Here's a related discussion: - Anyone else get bloating and abdominal pain from NETS or Lanreotide?...

https://connect.mayoclinic.org/comment/1199925/

Discussion: Is there anything I can do for the bloating?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Hi @docoltun, I thought I would bring in a few members to join me in welcoming...

https://connect.mayoclinic.org/comment/907198/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

"The Drs assured me I had no cancer and thought that CgA decrease was insignificant and...

https://connect.mayoclinic.org/comment/1312066/

Discussion: Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2025

Hello dhtaylor! My HPB surgeon warned me that the medication used for NET care ( Somatulin/Lanreotide)...

https://connect.mayoclinic.org/comment/944197/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

I like to hear any feedback on this. My doctor recommended stopping lanreotide injection after 2nd...

https://connect.mayoclinic.org/comment/970884/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2023

I had 3 Lanreotide injections, due for CT scan in June. I noticed my hair falling...

https://connect.mayoclinic.org/comment/863936/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2023

I does sound like you have NETs of the mesentery which is the tissue around your...

https://connect.mayoclinic.org/comment/1258023/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2025

@fim I have a pancreatic neuroendocrine tumor with metastasis to the liver and bones. I do...

https://connect.mayoclinic.org/comment/1507936/

Discussion: Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17 9:04am

Thank you! I had my first CT scan after surgery and 3 Lan injections. No tumour...

https://connect.mayoclinic.org/comment/876264/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2023

I am on Lanreotide - but bp lowered too. Stopped taking bp meds and started taking...

https://connect.mayoclinic.org/comment/1118171/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2024

@markmark007 The nurse told me the manufacturer was no longer making lanreotide. Ive had more fatigue...

https://connect.mayoclinic.org/comment/1428966/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2025

I've had 5 lanreotide injections and symptoms have gotten better with each shot. Usually just flatulence...

https://connect.mayoclinic.org/comment/866837/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2023

Lanreotide may help keep tumors stable which is why its often the first tool to reach...

https://connect.mayoclinic.org/comment/1448245/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2025

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