Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

Well differentiated, grade 2, neuroendocrine tumors in tail of pancreas and spread to some lobes of...

https://connect.mayoclinic.org/comment/1265518/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2025

I tried the protein shakes when I was recovering from my resection surgery. They contain a...

https://connect.mayoclinic.org/comment/919104/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

I have an injection of 125ml Lanreotide every 4 weeks, to stablise my NET in my...

https://connect.mayoclinic.org/comment/1352421/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2025

I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...

https://connect.mayoclinic.org/comment/1162603/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

@emma0444 I have copied our pathology report below for you. This is after surgery, after 9...

https://connect.mayoclinic.org/comment/835216/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

@stevestenberg31 My wife@Kim1965, in April 22 diagnosed with mass on pancreas and also too many lesions...

https://connect.mayoclinic.org/comment/830142/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

I get Sandostatin LAR injection every 4 weeks and neuroendocrine specialist advices against Pet GA 68...

https://connect.mayoclinic.org/comment/794761/

Discussion: PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2023

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272924/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

dougt, your Doc said no diet restrictions. Why only eat those 3 raw vegetables at lunch...

https://connect.mayoclinic.org/comment/1142890/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

I was diagnosed march of this year with a mass in mysmall intestine. Had surgery to...

https://connect.mayoclinic.org/comment/919630/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2023

I get the shot (Lanreotide) every 21 days and had my 41st injection yesterday. Fatigue is...

https://connect.mayoclinic.org/comment/1315505/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 29, 2025

@helloitsme It is nice to see so many comments to you! Congrats for choosing Mayo Phoenix...

https://connect.mayoclinic.org/comment/851553/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

You bring some interesting questions. The answers to those questions are not easy. We all seem...

https://connect.mayoclinic.org/comment/1169691/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Hi, yes my oncologist is a NET specialist at Baylor Sammons in Dallas. The Y90 was...

https://connect.mayoclinic.org/comment/1360233/

Discussion: Anyone on cabozantinib after Y90

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 30, 2025

@dbamos1945: Somatuline Depot is the brand name for the generic lanreotide; it's like calling Tylenol acetominophen....

https://connect.mayoclinic.org/comment/1334506/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

My wife has stage 4 technically with mass on pancreas and metastasis on liver. But after...

https://connect.mayoclinic.org/comment/843780/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2023

@laree I would assume the maintenance shots are Octreotide or Lanreotide injections done on a monthly...

https://connect.mayoclinic.org/comment/1401182/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2025

When I was diagnosed that my NET had come back 2 1/2 years after my liver...

https://connect.mayoclinic.org/comment/822159/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Kwan: Based on our own experiences dealing exclusively with NET's: There may be cases in which...

https://connect.mayoclinic.org/comment/969303/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

I also have Carcinoid Syndrome, PET scan shows it started in the small intestines and metastasized...

https://connect.mayoclinic.org/comment/878862/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

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