Neuroendocrine Tumors (NETs) Support Group | Page 45

My husband's first tumor was found in 1995. He was rediagnosed Stage 4 in 12/2023. The...

https://connect.mayoclinic.org/comment/1548868/

Discussion: Liver NETs: Anyone has extreme swelling in feet and ankles?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12 2:24pm

Just here to share my story and hopefully help others. I was diagnosed at 57 with...

https://connect.mayoclinic.org/comment/1312320/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

You are brave your brave enough to realize your having an imbalance that is bring you...

https://connect.mayoclinic.org/comment/1483251/

Discussion: How do you mentally handle reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15 4:43pm

We agree with the comments made by dbamos1945. My husband's orginal tumor was found in 1995....

https://connect.mayoclinic.org/comment/1504786/

Discussion: What helps with muscle aches and weakness after Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13 10:52am

Thank you all. This is really helpful. I should’ve been clear that I don’t have NETs....

https://connect.mayoclinic.org/comment/1532445/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 11:43pm

My husband's tumor was found in 1995 after his dr saw a shadow during a colonoscopy....

https://connect.mayoclinic.org/comment/1523777/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 8:51am

The fact that things are stable is excellent! Frankly since there is no evidence of disease...

https://connect.mayoclinic.org/comment/1498538/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:33am

@doonman My husband will have been on Lanriotide for 3 year on January 3, 2026. His...

https://connect.mayoclinic.org/comment/1449558/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2025

My husband has several tumors in his skull. His 1st tumor between the illium and bowel...

https://connect.mayoclinic.org/comment/1414095/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 12, 2025

Glad to hear that you are going to Mayo. My husband has NETS throughout his skull...

https://connect.mayoclinic.org/comment/1407458/

Discussion: Several inoperable paragangliomas, on lanreotide, now big mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

My personal experience is prrt is a four hour long session finishing up with a landreotide...

https://connect.mayoclinic.org/comment/1258436/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2025

I went to 2 local oncologists, 1 at Penn Medicine and 1 at Dana Farber. The...

https://connect.mayoclinic.org/comment/1216861/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

husband has been getting lenreotide every 28 days for 2 years. doesn't like the injection tho...

https://connect.mayoclinic.org/comment/1199704/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Hi @Hope33250, a trip to ER complaining of bloating and abdominal pain, and a CT scan...

https://connect.mayoclinic.org/comment/1014237/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2024

Hi Teresa, Dx was in 2009 when I went to the ER with worse headache I...

https://connect.mayoclinic.org/comment/933446/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

No on bland embolization, did not try lanretide, been on octreotide for 1 yr. had 4...

https://connect.mayoclinic.org/comment/1037570/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen....

https://connect.mayoclinic.org/comment/892443/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2023

I would recommend checking out Memorial Sloan Kettering in NYC as I think they have state...

https://connect.mayoclinic.org/comment/879794/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

Terry998: This is the first time I have found a person willing to talk about Cysts...

https://connect.mayoclinic.org/comment/819547/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

We're so sorry that you have to go through this. Keeping your spirit up when dealing...

https://connect.mayoclinic.org/comment/1481446/

Discussion: How do you mentally handle reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13 1:34pm