Neuroendocrine Tumors (NETs) Support Group

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Comments (649)

I will "hope" with you that this new treatment works. Is he still taking the Octreotide...

https://connect.mayoclinic.org/comment/887684/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

I did PRRT with octreotide Finished treatment in November of 2024 I am still receiving Octreotide...

https://connect.mayoclinic.org/comment/1329589/

Discussion: PRRT and Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

That is great news! I agree, Octreotide or Lan. shots really help with hormonal issues.

https://connect.mayoclinic.org/comment/1360742/

Discussion: (Spouse)Supports Stage 2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2025

When i had my monthly Lanreotide injection yesterday I was told they were switching to Octreotide....

https://connect.mayoclinic.org/comment/1427574/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

I understand you have had neuroendocrine tumors for many years. Were you receiving any treatment prior...

https://connect.mayoclinic.org/comment/1171846/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

I also have NET’s in my liver, I am on monthly octreotide injections. I have not...

https://connect.mayoclinic.org/comment/883630/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

It sounds like the Octreotide therapy works for you. Was there any surgery done before the...

https://connect.mayoclinic.org/comment/901727/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2023

There is a new oral version of octreotide that is used to control carcinoid syndrome. Perhaps...

https://connect.mayoclinic.org/comment/1334002/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Makes sense on why you want to try the short acting octreotide. I hope insurance covers...

https://connect.mayoclinic.org/comment/1128990/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

I have been taking octreotide injections for 4 years for lung NETs and have not had...

https://connect.mayoclinic.org/comment/1207164/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2025

Well my oncologist told that i could try Octreotide 0,1 mg 3 times a day for...

https://connect.mayoclinic.org/comment/1194269/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

Do you take lanreotide or octreotide injections? If so do I have side effects? Thanks! Marcia

https://connect.mayoclinic.org/comment/1173603/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

@kdubbs I have both DIPNECH and lung NETs. Your best bet finding someone to treat DIPNECH...

https://connect.mayoclinic.org/comment/1532862/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 12:39pm

Hello @elainedanielle, and welcome to Mayo Clinic Connect. I appreciate you sharing your journey with NETs....

https://connect.mayoclinic.org/comment/1537486/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28 5:45pm

Hello @char1962, You mentioned that you are getting injections. Are the injections you mentioned, PRRT treatments,...

https://connect.mayoclinic.org/comment/748523/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

The octreotide interferes with the radioactive tracer given when doing a pet scan So the ideal...

https://connect.mayoclinic.org/comment/1388144/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2025

@dadcue I am glad that you were able to meet with the endocrinologist. It sounds as...

https://connect.mayoclinic.org/comment/1557849/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: 18 hours ago

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

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