Neuroendocrine Tumors (NETs) Support Group | Page 2

@maeve115 I have been on chemo for four years. My liver and pancreas were failing. My...

https://connect.mayoclinic.org/comment/1639624/

Discussion: I'm newly diagnosed . . .small bowel NET at the ileocecal valve

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7 9:00am

@colleenyoung I was diagnosed with end stage 4 spread to my liver lymph nodes and lining...

https://connect.mayoclinic.org/comment/1630213/

Discussion: How do you manage symptoms of carcinoid syndrome? Tips please.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26 6:18pm

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET...

https://connect.mayoclinic.org/comment/922667/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

@links, do you have inflammation of the liver capsule? Or is it the tumor stretching the...

https://connect.mayoclinic.org/comment/967684/

Discussion: Anyone have stretching of the liver capsule?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

Is the Joe Tippens protocol for neuroendocrine cancer? It looked like it was for pancreatic cancer.....

https://connect.mayoclinic.org/comment/1289433/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

Hello @mamajeanne and welcome to Mayo Connect. I am glad that you found this forum, as...

https://connect.mayoclinic.org/comment/1568535/

Discussion: New to the group and cancer journey: Liver NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 6 9:06pm

I have not had a liver transplant but was diagnosed with NETS this April and I...

https://connect.mayoclinic.org/comment/1330014/

Discussion: Liver transplant and Neuroendocrine Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

I've tried hydroxyzine for months and also benadryl. Only cold helps. Liver specialist says paraneoplastic effect...

https://connect.mayoclinic.org/comment/1383695/

Discussion: How do you manage symptoms of carcinoid syndrome? Tips please.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2025

@tomrennie It's Grade 2. What did they do for ur liver metastases

https://connect.mayoclinic.org/comment/1587986/

Discussion: Anyone have pNET in pancreatic tail & had distal pancreactomy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31 10:52pm

Multiple liver nodules, 10-14 I believe so NETS surgeon removed a triangle section of liver.

https://connect.mayoclinic.org/comment/1301391/

Discussion: Has anyone had the peritoneal stripping surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2025

Yes, my fatty liver disease has gotten severe in the past year (as shown by my...

https://connect.mayoclinic.org/comment/1199891/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Well we were surprised at the transplant option, our assumption was we get the NET to...

https://connect.mayoclinic.org/comment/994290/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

@christobelle89 How long ago was your surgery and what did they do for your liver.

https://connect.mayoclinic.org/comment/1615712/

Discussion: Anyone have pNET in pancreatic tail & had distal pancreactomy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8 11:41am

Hi all, I’m glad I found this thread.. my husband was recently diagnosed with a 15cm...

https://connect.mayoclinic.org/comment/1601979/

Discussion: Anyone deal with severe pain after Y90 treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19 8:47pm

@markmark007 @xwing777 I was on CAPTEM for 13 cycles which took about a year. It reduced...

https://connect.mayoclinic.org/comment/1641166/

Discussion: Neuroendocrine Cancer journey update

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9 8:35am

@greenmountainzebra I just did a quick search of discussions on Connect. I could not find any...

https://connect.mayoclinic.org/comment/1610386/

Discussion: Anyone had a Laproscopic Liver Ablation for Liver Mets?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1 9:44am

@billbo I also had severe itching with liver mets that greatly decreased with treatment.

https://connect.mayoclinic.org/comment/1616353/

Discussion: Anyone experienced intense itch with pNETs mets to the liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9 8:55am

@rajeshaji I had my whipple in Sept,2025 last chemo in Dec2025,went you the doctors this week...

https://connect.mayoclinic.org/comment/1633538/

Discussion: Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 30 11:10am

Oh so sorry for the bad stuff following embolization. Not sure if it is helpful but...

https://connect.mayoclinic.org/comment/828461/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

yes was found in routine blood work with liver values off further testing revealed tumors in...

https://connect.mayoclinic.org/comment/671990/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2022