Neuroendocrine Tumors (NETs) Support Group | Page 29

I was diagnosed with NET's in my Liver back in December 2022, started Lanreodide for a...

https://connect.mayoclinic.org/comment/1539459/

Discussion: Does anyone have neuroendocrine small cell carcinoma of the liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 9:33am

Hi Jlu, first off, wow 10x10cm is a very big tumor. And you have lots going...

https://connect.mayoclinic.org/comment/857723/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2023

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

After a lot of tests, scans and different doctors over the course of the last year,...

https://connect.mayoclinic.org/comment/912620/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2023

Hi. Good to hear from you. I will try to help. What I have done has...

https://connect.mayoclinic.org/comment/776368/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

@shirleyslominski I am also allergic to Sandastatin,(Ocreotide) I have a respiratory reaction to the drug, But...

https://connect.mayoclinic.org/comment/1530365/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 6:10am

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

As far as side effects from the PRRT treatments, I really didn't have any I could...

https://connect.mayoclinic.org/comment/1501633/

Discussion: Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9 10:52am

My tumors started in the small intestine and metastasized to the liver before I was diagnosed....

https://connect.mayoclinic.org/comment/1072655/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2024

What I do know is that when I had my liver resection 4 years ago they...

https://connect.mayoclinic.org/comment/994210/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

Thank you I did Lanreotide had bad side effects had to stop I was ok on...

https://connect.mayoclinic.org/comment/830413/

Discussion: Stopping Octreotide???

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

Hi! Thank you ❤️so much for all your reply’s. A lot of your questions and comments...

https://connect.mayoclinic.org/comment/1440546/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2025

I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very...

https://connect.mayoclinic.org/comment/1435486/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

Hi Ocreotide and Lanreotide are administered differently and some individuals may have distinct side effects and...

https://connect.mayoclinic.org/comment/1429026/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2025

Update on my son…. It’s actually a lot but will cut to chase. He had surgery...

https://connect.mayoclinic.org/comment/1409859/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2025

Yes, I have had a significant increase in fatty liver over the course of a year...

https://connect.mayoclinic.org/comment/1376841/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2025

I just completed my last PRRT (Lutathera)treatment in May, I had a scan before my third...

https://connect.mayoclinic.org/comment/1324144/

Discussion: Advice for Preparations and Expectations on starting PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2025

Thank you My worst side effects are total exhaustion massive headache and diarrhea The more minimal...

https://connect.mayoclinic.org/comment/1313479/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2025

My treatments were different I had 4 and they were 8 weeks apart Except for after...

https://connect.mayoclinic.org/comment/1312828/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

Take a deep breath. There are lots of treatments for this cancer. I also have a...

https://connect.mayoclinic.org/comment/1219584/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025