Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

I’ve been on Ocreotide for about 18 months it has worked great on the hot flashes,...

https://connect.mayoclinic.org/comment/1194070/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

My tumors are not in my lungs but in response to the flushing, I experienced flushing...

https://connect.mayoclinic.org/comment/1107435/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Yes the bloating in my case was from lanreotide and Ocreotide My stomach is perfectly flat...

https://connect.mayoclinic.org/comment/862879/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2023

Thank you. Yes my last 4th treatment was on the 14th. Several of my labs came...

https://connect.mayoclinic.org/comment/257043/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2020

@hopeful33250 Wow - what a great article and information. No, I didn't know about octreotride. I...

https://connect.mayoclinic.org/comment/297055/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2020

Teresa, Carcinoid has been one of the many things I have thought about. I have had...

https://connect.mayoclinic.org/comment/186235/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 24, 2018

@lns83 Currently still on Ocreotide (2 shots every 28 days) ( I also have carcinoid syndrome...

https://connect.mayoclinic.org/comment/1414321/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2025

I'm so sorry you're in this club but its great that you're seeking out answers. I...

https://connect.mayoclinic.org/comment/1356211/

Discussion: My journey to here...

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Hello, I was diagnosed about 2 1/2 years ago, primary tumor was identified in the small...

https://connect.mayoclinic.org/comment/1317375/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2025

I would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my...

https://connect.mayoclinic.org/comment/1294461/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

I’ve been on Ocreotide for over 2 years, approx 16 tumors on my Liver. There has...

https://connect.mayoclinic.org/comment/1274535/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

Hi My husband has a similar situation. He was diagnosed last March with a grade 1,...

https://connect.mayoclinic.org/comment/1216829/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

Looking back, I had symptoms of severe diarrhea 5 years before diagnosis. Nightime diarrhea including incontinence....

https://connect.mayoclinic.org/comment/1202313/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2025

Been taking Ocreotide for about 18 months 2 shots every 28 days.. stage 4 metastasized to...

https://connect.mayoclinic.org/comment/1196525/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

I feel great! The anti nausea meds they gave me during the treatment worked great, no...

https://connect.mayoclinic.org/comment/1189177/

Discussion: Has anyone out there tried Histotripsy for tumors in the liver?

Support Group: Liver Cancer

Posted: Dec 12, 2024

I’ve been taking Ocreotide for 18 months, I get 2 shots every 28 days, outside of...

https://connect.mayoclinic.org/comment/1176313/

Discussion: Ocreotide side effects: Anyone have dizzy spells?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2024

My first MRI was Dec 2022 when I was diagnosed. PET Scan was January 2023 to...

https://connect.mayoclinic.org/comment/1165530/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2024

I am also one of the lucky ones with carcinoid syndrome.. started with Lanreotide which didn’t...

https://connect.mayoclinic.org/comment/1123918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2024

I should mind my own business However! I have had 4 different options if there is...

https://connect.mayoclinic.org/comment/1028520/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2024

My condition is similar stage 4 due to it metastasizing to the liver, origin is the...

https://connect.mayoclinic.org/comment/1106025/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

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