Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

983 total results

Comment

@pipo It's a long list. Distal Pancreatectomy Y90 to both lobes of liver Octreotide/Lanreotide Cyberknife to...

https://connect.mayoclinic.org/comment/1407713/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

Comment

Hi, my husband has very similar diagnosis in Feb. Has had 1 injection, 120mg. of Lanreotide....

https://connect.mayoclinic.org/comment/1252443/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

Comment

@penynah: Are you still seeing boil/sty/pimple sores on face after Lanreotide 28 day injection? This month...

https://connect.mayoclinic.org/comment/1161208/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

Comment

@kim1965 Hi kim1965 A lot has gone on since my last post. My tumor is stage...

https://connect.mayoclinic.org/comment/837243/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

Comment

I've had NETs of the small intestine (Mesentery) for many years. Let me offer this hypothetical:...

https://connect.mayoclinic.org/comment/1348269/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

Comment

You are correct, Somatuline or Lanreotide can produce gall stones among other side effects. How long...

https://connect.mayoclinic.org/comment/1254970/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

Comment

I have Grade 2 Stage 4 pNET ( due toliver metastases) and am currently on Lanreotide...

https://connect.mayoclinic.org/comment/900598/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2023

Comment

I have 5 years diagnosed NET and on Lanreotide. No hair loss. I recently switched my...

https://connect.mayoclinic.org/comment/1011772/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

Comment

I’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the...

https://connect.mayoclinic.org/comment/831689/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Comment

https://www.ipsencares.com/somatuline-depot-patient-support This is where you will find the program from Ipsen which helps patients get access...

https://connect.mayoclinic.org/comment/1423533/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2025