Neuroendocrine Tumors (NETs) Support Group

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@billbo I had 13 cycles of CAPTEM which is capecitabine and temozolomide. For me, each cycle...

https://connect.mayoclinic.org/comment/1616656/

Discussion: Itch with liver pNets

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@seesspotz It's so hard to hear that, I'm sure. First question - are you seeing a...

https://connect.mayoclinic.org/comment/1553522/

Discussion: Liver Mets treatment options for carcinoid NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18 10:36am

@christobelle89 Thank you for the response. That makes sense so I need to ask the doctors....

https://connect.mayoclinic.org/comment/1609622/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30 9:23am

@billbo I had Class 3 itching while starting Afinitor. I managed it with Aveeno or Cetafil...

https://connect.mayoclinic.org/comment/1615705/

Discussion: Itch with liver pNets

Support Group: Neuroendocrine Tumors (NETs)

Posted: 2 days ago

I have metastatic liver cancer I have been told MRI is the best scan for the...

https://connect.mayoclinic.org/comment/1207344/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Hi @solaviera. Welcome to Mayo Connect. Sometimes fatty liver just happens. I pulled this from Mayo's...

https://connect.mayoclinic.org/comment/1376785/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2025

Hello @amygirl, The question about fatty liver and NETs is something that your doctor could best...

https://connect.mayoclinic.org/comment/1197875/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

@tomrennie My surgical consult with Stanford Dr discovered 2 liver lesions that metastasized from Pnet. Awaiting...

https://connect.mayoclinic.org/comment/1573691/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13 9:50am

My husband also has a NET with mets to the peritoneal and liver. I am very...

https://connect.mayoclinic.org/comment/1616569/

Discussion: NET Stage 2 in Stomach

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@californiazebra thank you GI. This is for liver mets that have progressed.

https://connect.mayoclinic.org/comment/1594743/

Discussion: What side effects did you experience with Octreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10 4:14am

@drkarasheed, you may wish to join these relevant discussions: - Pancreatic Cancer: Anyone have liver metastasis...

https://connect.mayoclinic.org/comment/1304347/

Discussion: I’m living with Pancreatic Neuroendocrine Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2025

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

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: Carcinoid syndrome symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2025

@mlassen1 The newer injection, lanreotide, seems very well tolerated. Have not heard of problems with diarrhea...

https://connect.mayoclinic.org/comment/1596372/

Discussion: What side effects did you experience with Octreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12 8:45am

@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

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

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