Neuroendocrine Tumors (NETs) Support Group

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Comments (689)

Sophiarose Hope your thanksgiving was good. I’ve been on Ocreotide for 18 months, it does control...

https://connect.mayoclinic.org/comment/1181640/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hello @klpetts Will your next PRRT treatment be later this month? I hope you are continuing...

https://connect.mayoclinic.org/comment/257033/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2020

@dbamos1945 Thank you for responding. ‘Congratulations on your PRRT results. That’s fantastic. My wife gets her...

https://connect.mayoclinic.org/comment/1498555/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:52am

Definitely discuss with your doctor's, all I can offer in my wife's case, is her weight...

https://connect.mayoclinic.org/comment/1047722/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2024

kwan: My wife is scheduled for a PET Ga-68 dotatate/MR scan and a separate MRI with...

https://connect.mayoclinic.org/comment/1046601/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2024

I'm sorry your partner is going through this. I know how disheartening it is when the...

https://connect.mayoclinic.org/comment/1329866/

Discussion: PRRT and Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

@donbarks: I too have primary in small bowel (grade 1, stage4) with metastases in liver (no...

https://connect.mayoclinic.org/comment/1497043/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3 9:02am

My incontinence was enough to classify me as unsuitable for PRRT treatment. Radiation residue was the...

https://connect.mayoclinic.org/comment/815563/

Discussion: PRRT for those with Incontinence Issues

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2023

Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary...

https://connect.mayoclinic.org/comment/1288577/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

ki67 20% is borderline grade 3 (like my condition) so that will make it more aggressive...

https://connect.mayoclinic.org/comment/1394494/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

Hello @steven1953 and welcome to Connect. It is good to find out the experiences of others...

https://connect.mayoclinic.org/comment/1106585/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

Hello @klpetts, I was just thinking about you. How was your June 24 PRRT treatment? How...

https://connect.mayoclinic.org/comment/257028/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2020

Hi if anyone know how far you have to say away from people after the radiation...

https://connect.mayoclinic.org/comment/1405528/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2025

Sorry you got sick! But happy to hear you are finally going to get the PRRT....

https://connect.mayoclinic.org/comment/1515049/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26 11:00am

@lu7, I appreciate getting your hopeful update. This sounds great. How are you managing the infusions?Any...

https://connect.mayoclinic.org/comment/824772/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2023

Hi I was wondering if there is much pain from the PRRT. Thanks kurt I have...

https://connect.mayoclinic.org/comment/1406013/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2025

I have hair loss not sure if it is from PRRT treatment or the octreotide treatment...

https://connect.mayoclinic.org/comment/1389916/

Discussion: PRRT and hair loss

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2025

My best kevel of treatment would be PRRT, peptide radionuclear therapy, a targeted form of radiation....

https://connect.mayoclinic.org/comment/1266591/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Thanks @sophiarose. They're planning to start next week so fingers crossed, it'll go well. If not,...

https://connect.mayoclinic.org/comment/1122771/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

@worriedlovingwife Is your husband considered a candidate for PRRT therapy? Here is some information about this...

https://connect.mayoclinic.org/comment/292378/

Discussion: Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2020

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