Neuroendocrine Tumors (NETs) Support Group

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Comment

Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I...

https://connect.mayoclinic.org/comment/900525/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2023

Comment

I have only had the every 28 day injections I did lanreotide for 3 months (3...

https://connect.mayoclinic.org/comment/820017/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2023

Comment

Mostly well. I go to Moffitt in Tampa every 8 months for my check and MRI...

https://connect.mayoclinic.org/comment/1218131/

Discussion: Is there anything I can do for the bloating?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2025

Comment

I've stopped the lanreotide and am restarting the immunotherapy. My dr told me we would know...

https://connect.mayoclinic.org/comment/1214885/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2025

Comment

Good morning I have NETS in my small bowels and Liver, also with carcinoid syndrome, diarrhea,...

https://connect.mayoclinic.org/comment/1507896/

Discussion: Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17 8:12am

Comment

Everyones situation is different, I started with Lanreotide, for the first 3 months, then switched to...

https://connect.mayoclinic.org/comment/1364750/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 6, 2025

Comment

It’s so hard to generalize one experience to others except as an example. In 2014-15, I...

https://connect.mayoclinic.org/comment/1001387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Comment

After my last prrt (11/24) I was only getting lanreotide monthly. Felt great, better than before...

https://connect.mayoclinic.org/comment/1500040/

Discussion: How to cope with the uncertainty after last PRRT? Scanxiety

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7 8:51am

Comment

My husband started Roth Octreotide & has now switched to Lanreotide, both shots makes him itch...

https://connect.mayoclinic.org/comment/1334316/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

Comment

Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum)...

https://connect.mayoclinic.org/comment/1203247/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

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