Neuroendocrine Tumors (NETs) Support Group

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Comments (933)

I have a similar reaction to the Lanreotide shots. I agree that it depends on who...

https://connect.mayoclinic.org/comment/884583/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Hello, my husband was diagnosed with stage four metastatic PNET cancer last October. He has a...

https://connect.mayoclinic.org/comment/866675/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

I’m so glad you posted this. I receive octreotide injections with my PRRT treatments. I had...

https://connect.mayoclinic.org/comment/846908/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

my primary NET was small intestine with secondary tumor in mesentery. Liver mets were detected 3...

https://connect.mayoclinic.org/comment/828228/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2023

Hi, I have a carcenoid tumor, inoperable, stage 4 cancer, in my Mesentery, it is in...

https://connect.mayoclinic.org/comment/748346/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2022

PNET found last January, had 5cm tumor removed last April along with the body an tail...

https://connect.mayoclinic.org/comment/1497631/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3 9:53pm

I just had my second lanreotide injection this past Tuesday with very little adverse reactions to...

https://connect.mayoclinic.org/comment/907544/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is...

https://connect.mayoclinic.org/comment/885907/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

@fraaseo I am also Stage 2, Grade 4 small intestine metastasized to my liver with multiple...

https://connect.mayoclinic.org/comment/1418686/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2025

Hi. My son has well differentiated, grade 2 NETs. He is currently only receiving monthly Lanreotide...

https://connect.mayoclinic.org/comment/163153/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2017

Hi rogo yes I live with diagnosis of DIPNECH & lung neuroendocrine cancer (Typical tumor)confirmed by...

https://connect.mayoclinic.org/comment/1288532/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

@sonalisaha09 . I am having Somatuline/Lanreotide injections every 4 weeks. This is to slow down the...

https://connect.mayoclinic.org/comment/1409648/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2025

How was your cancer discovered? Do you know the grade of your NETs? I'm in the...

https://connect.mayoclinic.org/comment/1369258/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2025

I was diagnosed in 2023, this was all found on accident as I was involved in...

https://connect.mayoclinic.org/comment/1102518/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2024

I was diagnosed with neuroendocrine metastic to the liver and 1 lymph node with pancreatic primary...

https://connect.mayoclinic.org/comment/881040/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

@mmar2025 it was discovered during emergency surgery for a perforated esophagus. Surgeon saw tumors all over...

https://connect.mayoclinic.org/comment/1541114/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 10:32am

davisnrn: I read your post I am going to be 70 and I am in my...

https://connect.mayoclinic.org/comment/1017749/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2024

I started taking Lanreotide 2/15/23. I had similar side effects at first until full blockage and...

https://connect.mayoclinic.org/comment/898816/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I'm a NETs patient on monthly Lanreotide. I just had a tooth pulled using Lidocaine at...

https://connect.mayoclinic.org/comment/1322071/

Discussion: Root canal without Epinephrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2025

Hello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small...

https://connect.mayoclinic.org/comment/1295494/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

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