Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,244 total results

Comments (2,054)

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

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 3:22pm

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

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

Getting ready for my first PRRT treatment in August for stage IV primary gastric tumor with...

https://connect.mayoclinic.org/comment/1358080/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28 5:34am

My wife, @Kim1965, was diagnosed with NET April 2022, with mass on tail of pancreas and...

https://connect.mayoclinic.org/comment/793540/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2023

Just about 1 year after starting Lanreotide. My initial diagnosis (discovered during a scan for another...

https://connect.mayoclinic.org/comment/729621/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

Hi, My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in...

https://connect.mayoclinic.org/comment/1202058/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 1 9:52pm

Thank you Teresa for the link to the Carcinoid Foundation. My symptoms were: blood in urine...

https://connect.mayoclinic.org/comment/267671/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 6, 2019

Linda, Awesome - thank you for sharing. This is good information, and I did find a...

https://connect.mayoclinic.org/comment/1357269/

Discussion: New PNET Question Re: Surgery (I'm in bit of a pickle)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26 10:04pm

I had my 42nd lanreotide injection recently I’ve only had lethargy for a few days or...

https://connect.mayoclinic.org/comment/1196625/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

My husband takes Creon for his diarrhea even though his tumors are mostly in his liver....

https://connect.mayoclinic.org/comment/1325333/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12 12:16am

Hello @kim1965 I'm glad that you were able to read the experience of @outlawcancer in order...

https://connect.mayoclinic.org/comment/817613/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Thanks for your comment. I have since learned that non functioning (no symptom) tumors do not...

https://connect.mayoclinic.org/comment/1166857/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2024

I've had MRI'S and CT scans (5) with contrasting. Had my latest Friday my 12th chemo...

https://connect.mayoclinic.org/comment/807241/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Stay positive! My husbands liver tumors have been as big as 9 cm ..up and down...

https://connect.mayoclinic.org/comment/1029025/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2024

TY. Interesting my oncologist didn't comment on replacing my liver as I have a similar situation...

https://connect.mayoclinic.org/comment/952673/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

Kaw627: It seems your NET experience is very similar to mine. I am very interested in...

https://connect.mayoclinic.org/comment/948956/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2023

I’m stage IV grade 2. Neuroendocrine, Primary in small intestine, metastatic to liver and other areas....

https://connect.mayoclinic.org/comment/812339/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

Follow

8875

54 minutes ago

Pancreatic Cancer

Follow

3104

1 hour ago

Follow

7141

1 hour ago

Cancer: Managing Symptoms

Follow

4912

3 hours ago

Follow

1632

3 hours ago