Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

@markmark007 This is a good question, Sharon. While you wait to hear from other members of...

https://connect.mayoclinic.org/comment/794291/

Discussion: PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

HI @lupitaromero Hope all is well with peace in your life. I was diagnosed with large...

https://connect.mayoclinic.org/comment/854646/

Discussion: Alguien ha tenido metastasis en ganglios? Metastases in lymph nodes

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

@mbg20 my primary oncologist is Dr Dar (primary office is in Leesburg, VA). Dar was recommended...

https://connect.mayoclinic.org/comment/820306/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

I had most my pancreas removed as well as spleen and gallbladder in 2020. In 2023...

https://connect.mayoclinic.org/comment/1217431/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2025

My tumor was around the tail of the pancreas, so I had distal pancreatectomy and splenectomy....

https://connect.mayoclinic.org/comment/1088225/

Discussion: NET in body of pancreas: What are my treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2024

I have metastasis liver net with unknown primary they believe it is in my gut I...

https://connect.mayoclinic.org/comment/922592/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

My symptoms were bloating, severe abdominal pain resulting in slight temperature spike and vomiting. This happen...

https://connect.mayoclinic.org/comment/829669/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

Ive been on Lanreotide every 3 weeks since last year and still struggle with diarrhea and...

https://connect.mayoclinic.org/comment/1289328/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

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

I don’t know which it is either, but because of weight loss I really try to...

https://connect.mayoclinic.org/comment/937616/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

Hi, I'm new to this group. Was dx Dece. of 2021 after developing a bowel obstruction....

https://connect.mayoclinic.org/comment/826685/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

I had a liver tumor biopsy in October even though the doctors and I all knew...

https://connect.mayoclinic.org/comment/795174/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2023

I am following this discussion with interest of PRRT (I get 2nd Lutathera 8/8/24) with Lanreotide...

https://connect.mayoclinic.org/comment/1117701/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2024

@Pavlina60: wondering how your pancreatic cancer is behaving after surgery. My latest MRI showed significant tumor...

https://connect.mayoclinic.org/comment/1109535/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

Hi there, my hubs had had NETS (neoendrocrine tumors) since 2019. I saw the above post...

https://connect.mayoclinic.org/comment/1231187/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

Hi All, I too see Dr. Sonbol at Mayo Arizona and love him and the team....

https://connect.mayoclinic.org/comment/1123480/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2024

I had major flushing and diarrhea I was put in Lanreotide which made those symptoms worst...

https://connect.mayoclinic.org/comment/753332/

Discussion: My first sudden facial flush since NETs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

I have been on Lanreotide for a year and a half and at the beginning many...

https://connect.mayoclinic.org/comment/1254812/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I was diagnosed with atypical carcinoid of the lung that had metastasized to my lymph nodes....

https://connect.mayoclinic.org/comment/1025524/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

I’m having similar problems and am no sure whether it’s the lanreotide or the 15” removed...

https://connect.mayoclinic.org/comment/858717/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

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