Neuroendocrine Tumors (NETs) Support Group

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Comment

Cabometyx (or cabozantinib) has been around since about 2010, recently approved for well-differentiated pNET and epNETs....

https://connect.mayoclinic.org/comment/1356064/

Discussion: New approved drug for pNETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Comment

I am also going through the same thing but the tumors are through out (inside) my...

https://connect.mayoclinic.org/comment/1282983/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2025

Comment

Sounds as if your medical team has caught this before it forms into the tumor and...

https://connect.mayoclinic.org/comment/1496180/

Discussion: Someone can help?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2 8:53am

Comment

Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of...

https://connect.mayoclinic.org/comment/1305039/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2025

Comment

It’s hard to determine which side effects were due to the chemo (pill version) or the...

https://connect.mayoclinic.org/comment/826544/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

Comment

Lots of ways you could go. I had Folfox through a chemo port (6 cycles) then...

https://connect.mayoclinic.org/comment/1326528/

Discussion: Scan shows interval progression on lanreotide: Is CAPTEM next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2025

Comment

Also- he did develop mild diabetes after the pancreas surgery. The use of lanreotide has contributed...

https://connect.mayoclinic.org/comment/978538/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2023

Comment

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First...

https://connect.mayoclinic.org/comment/914810/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

Comment

I am new to this group and have been getting Lanreotide since May of 2022. I...

https://connect.mayoclinic.org/comment/818984/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2023

Comment

I too have a lot of itching and as weird as it sounds my ears itch...

https://connect.mayoclinic.org/comment/1386144/

Discussion: Why do almost none of the sites online mention severe itching?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

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