Neuroendocrine Tumors (NETs) Support Group

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Comment

That's great news! Thanks for updating us. I know you indicated that she has an oncologist...

https://connect.mayoclinic.org/comment/1360503/

Discussion: (Spouse)Supports Stage 2

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2025

Comment

My husband does the Lanreotide 120 every 28 days. Medicare B covers 100%. He then did...

https://connect.mayoclinic.org/comment/1134950/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Comment

Hello @mimighosh, I'm glad that you posted an update about your husband's treatment and that you...

https://connect.mayoclinic.org/comment/1295553/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

Comment

My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then...

https://connect.mayoclinic.org/comment/1269466/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

Comment

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was...

https://connect.mayoclinic.org/comment/1208804/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

Comment

Allow me to be the acronym buster for this discussion: - SSA = Somatostatin analogue https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are...

https://connect.mayoclinic.org/comment/1001311/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Comment

Yes, Cap/Tem is chemo in oral form. Ten days of Cap and day 11 through 14...

https://connect.mayoclinic.org/comment/955870/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2023

Comment

Hello @spinhead, There are several members of the group who have had a reduction in NETs...

https://connect.mayoclinic.org/comment/933319/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

Comment

I was diagnosed with NET’s December, 2022. Started the same, small intestines and spread to the...

https://connect.mayoclinic.org/comment/842035/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Comment

I have completed my 4th shot . I stand corrected the shots are octeotride, a cousin...

https://connect.mayoclinic.org/comment/1453510/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2025

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