Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

His oncologist provided the form. The form is called PANO Service Request Form. PANO stands for...

https://connect.mayoclinic.org/comment/1423184/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2025

@dbamos1945, were you told that Somatuline Depot (lanreotide) interacts with serotonin? Were you able to talk...

https://connect.mayoclinic.org/comment/970769/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2023

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

@skjones56 I just saw that you stated no current symptoms in your original comment. My bad...

https://connect.mayoclinic.org/comment/1497951/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 11:15am

After radiation and chemo my LNet was reduced in size by 50%. I am now on...

https://connect.mayoclinic.org/comment/1003892/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

I don't think taking Lanreotide would hurt and it's better to get going with this treatment...

https://connect.mayoclinic.org/comment/1237750/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Yes, I have had 25 Lanreotide injections (24 months) and have similar experience that you cite...

https://connect.mayoclinic.org/comment/1207625/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Hi My husband has a similar situation. He was diagnosed last March with a grade 1,...

https://connect.mayoclinic.org/comment/1216829/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

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

My son was stage 3 when diagnosed. He went thru an unsuccessful whipple procedure because of...

https://connect.mayoclinic.org/comment/1122194/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2024

I have been on lanreotide injections for the last 15 months. It’s hard to differentiate between...

https://connect.mayoclinic.org/comment/1102877/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2024

Just about 1 year after starting Lanreotide. My initial diagnosis (discovered during a scan for another...

https://connect.mayoclinic.org/comment/729621/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

Hello @suelehmann and welcome to the NETs support group on Mayo Connect. You mentioned that you...

https://connect.mayoclinic.org/comment/967157/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2023

I'm also on Lanreotide...have had two injections so far. I have 3 TACE treatments with the...

https://connect.mayoclinic.org/comment/830111/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

Have your doctors discussed having Lutathera treatment? My husband has Stage 4 NET that started in...

https://connect.mayoclinic.org/comment/1505529/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14 10:49am

I have been taking Lanreotide for two years. My hair started falling out and I had...

https://connect.mayoclinic.org/comment/874989/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

What is the Y 90 treatment? I also have had good results with the Lanreotide plus...

https://connect.mayoclinic.org/comment/1055380/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Hello! I have been on lanreotide injections since March 2023. The first day I go on...

https://connect.mayoclinic.org/comment/909146/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2023

I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part...

https://connect.mayoclinic.org/comment/791950/

Discussion: NET-VIPoma pancreatic tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

I have just been diagnosed with Neuroendocrine cancer, and currently have no symptoms. It is metastatic,...

https://connect.mayoclinic.org/comment/825770/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2023

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