Neuroendocrine Tumors (NETs) Support Group

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Comments (939)

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

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

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

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

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

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

@zacharycat My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well...

https://connect.mayoclinic.org/comment/1537920/

Discussion: Is anyone taking cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29 10:59am

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

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

Update for folks who have been so helpful - doctor appointment hard but useful. Lanreotide alone...

https://connect.mayoclinic.org/comment/1328851/

Discussion: Help understand interval progression

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I was diagnosed in Jan. with pancreatic tumors in the tail of my pancreas that has...

https://connect.mayoclinic.org/comment/1268556/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28, 2025

My husband was diagnosed with stage 4 pnet with a 50% tumor burden in 2008. After...

https://connect.mayoclinic.org/comment/1477312/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8 9:42am

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

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

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my...

https://connect.mayoclinic.org/comment/812349/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

Check out online sites like Neuroendocrine Tumor Research Foundation to locate what to eat with NETs,...

https://connect.mayoclinic.org/comment/938740/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

We 'Zebras' will likely have different reactions to treatments. The Oncologist (specializing in NET's) is the...

https://connect.mayoclinic.org/comment/1232825/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

Hello! I have similar diagnosis - pNET and liver metastases. Surgery for the pNET and debulking...

https://connect.mayoclinic.org/comment/1076200/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Hi, I have had 2 of these scans, one in 3/23 and my second on 2/20/24,...

https://connect.mayoclinic.org/comment/1024460/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

His Dr. initially wanted him to take a break from chemo after six months but with...

https://connect.mayoclinic.org/comment/885634/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023