Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

One of the nice things about trying a new medication is that if it doesn't make...

https://connect.mayoclinic.org/comment/1164541/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2024

I’m new to this forum, after recently being diagnosed and getting over that shock, next was...

https://connect.mayoclinic.org/comment/820238/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

@doonman , Lanreotide does not shrink tumors, just stabilize the disease. It is the " tool...

https://connect.mayoclinic.org/comment/1448676/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2025

I don't know anything about Panama, but there are generic versions of Lanreotide that might cost...

https://connect.mayoclinic.org/comment/1415200/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

I have been getting Lanreotide injections every 4 weeks since July 2019. I responded well, with...

https://connect.mayoclinic.org/comment/791955/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

Have you had a PET scan by chance? Just wondering how you were diagnosed? Your surgical...

https://connect.mayoclinic.org/comment/1228952/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2025

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

I had pancreatic surgery in February. Have metastases in liver. Just had my first Lanreotide injection...

https://connect.mayoclinic.org/comment/826603/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

I'm currently taking Lanreotide. I have taken Octreotide as well. It is so hard to separate...

https://connect.mayoclinic.org/comment/1391715/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

Hi @rogerstc, according to this article about Lanreotide from Mayo Clinic "This medicine may increase your...

https://connect.mayoclinic.org/comment/1026257/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2024

I to had my first Lanreotide injection on July 6th after having pancreatic cancer surgery in...

https://connect.mayoclinic.org/comment/898534/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I'm not familiar with the term, "centriest" @panorman3. Perhaps the term is "mesentery"? The mesentery is...

https://connect.mayoclinic.org/comment/1257878/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2025

@lady2 and welcome to the NETs discussion on Mayo Clinic Connect. I see that you have...

https://connect.mayoclinic.org/comment/855693/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 7, 2023

@helloitsme Lean on all of us for help, many of us have been on this journey...

https://connect.mayoclinic.org/comment/851636/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

@destinjim: Your symptoms sound so familiar, Lanreotide injections slowly relieved these symptoms for me; however, I...

https://connect.mayoclinic.org/comment/1467863/

Discussion: Lanreotide side effects: Anyone having GI issues?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2025

She thinks we can stop the lanreotide now because she gave it to me only to...

https://connect.mayoclinic.org/comment/1248972/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2025

I was diagnosed with Carcinoid tumor in Feb 2023. My Chromogranin A blood count had hit...

https://connect.mayoclinic.org/comment/929310/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2023

I am so sorry for her pain, but it is not unusual. However, it does subside...

https://connect.mayoclinic.org/comment/934820/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2023

@billyfeet Kim continues to have too many high/lows on her sugar count. From lows to 45...

https://connect.mayoclinic.org/comment/837395/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

I'm sorry you're seeing progression. Sounds like it's time for some treatment. I strongly recommend that...

https://connect.mayoclinic.org/comment/1432863/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

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