Neuroendocrine Tumors (NETs) Support Group

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I did not tolerate well the milk shakes, probably due to milk, but also cacao is...

https://connect.mayoclinic.org/comment/919089/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

https://connect.mayoclinic.org/discussion/is-there-a-particular-diet-to-have-when-beginning-lanreotide-injection/Reading what others have said confirms that as NET patients we are all different. I was...

https://connect.mayoclinic.org/comment/1252413/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

I hope you are doing well and have no recurrence of NETs! Do you mind sharing...

https://connect.mayoclinic.org/comment/1239322/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2025

@fae As a fellow Wisconsin Badger, my wife has dealt with the past 9 months, similar...

https://connect.mayoclinic.org/comment/827529/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Always keeping the fight! Glad to hear you have a great experience at Dana Farber. Being...

https://connect.mayoclinic.org/comment/943748/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2023

@cangre82, a lot of us have done your path, and we tell you our story and...

https://connect.mayoclinic.org/comment/1074865/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2024

I understand how you are feeling, my two youngest were 6 when I was diagnosed with...

https://connect.mayoclinic.org/comment/800359/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2023

I have had all stool tests, ct liver belly, pancreas and ldct lung which showed 6...

https://connect.mayoclinic.org/comment/823720/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Are you still on CapTem. I have been in on it for 6 months. Dr. Hopes...

https://connect.mayoclinic.org/comment/1367019/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2025

Indeed nearly a meter of my small intestine was removed, along with a mass of lymph...

https://connect.mayoclinic.org/comment/1393614/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

My husband also has one in the small intestine that metastasized to the liver & spine,...

https://connect.mayoclinic.org/comment/885632/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

I was diagnosed with multiple Net’s in the small bowel, and 16 Net’s on my liver...

https://connect.mayoclinic.org/comment/1023918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2024

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 agree it's hard being one's own advocate. I don't even know what I should be...

https://connect.mayoclinic.org/comment/1334787/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2025

Thanks for your reply. So it has not gotten any better for you over the years....

https://connect.mayoclinic.org/comment/1207776/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

My husband had a 50% tumor burden in his liver. He had radioembolization done in 2010....

https://connect.mayoclinic.org/comment/1174884/

Discussion: Radioembolization Is My Next Step

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2024

I do not see my specialist until mid June, but I did see my gp. I...

https://connect.mayoclinic.org/comment/1075835/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2024

Hi! I am also getting 4th mo SamotulineDepot injections due to small intestine NET primary with...

https://connect.mayoclinic.org/comment/810312/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2023

Hi I am happy to engage a conversation on my personal email if you would like!...

https://connect.mayoclinic.org/comment/807004/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

@dbamos1945 Very similar, well differentiated, grade 2, KI67- 6.6% Stage 4 , small intestine, metastasized to...

https://connect.mayoclinic.org/comment/1414315/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2025

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