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Neuroendocrine Tumors (NETs) Support Group

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Discussion
Lanreotide and Refrigeration
Has anyone left their Lanreotide out of the fridge overnight? What to do in case of an appliance breakdown.
Last active: Oct 12, 2023
Discussion
PRRT and Lanreotide
Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2,...
Last active: Jun 19, 2025
Discussion
PRRT and lanreotide questions
My partner is grade 2, stage 4 PNET diagnosed Jan 28 2025 and post start of lanreotide (3 months) showed growth still. Starting PRRT shortly....
Last active: Jul 26, 2025
Discussion
Diet restrictions with Lanreotide?
I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat...
Last active: Apr 6, 2025
Discussion
Neuroendocrine Lanreotide (Advanz Pharma) Problems
So, I'm writing this on behalf of my mom. She was first diagnosed with pancreatic neuroendocrine cancer in Sept/2019, because of the extent of the...
Last active: Feb 17 8:54pm
Discussion
Anyone have hair loss with lanreotide?
After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....
Last active: Nov 4, 2024
Discussion
Lanreotide Manufacturers: anyone have experience with either?
Lanreotide Manufacturers Approved products are manufactured by Ipsen and Cipla - does anyone have experiences when the the two products are used in ones' NET...
Last active: Mar 18, 2023
Discussion
Is it common to start on Lanreotide with no known tumors?
Hello, brand new member here. Hoping to tap into the group's wisdom! In January I was diagnosed with a GI-NET (terminal ileal, well-differentiated, grade 2,...
Last active: Jun 12, 2023
Discussion
Lanreotide eventually becomes less effective, why?
I'm about to take my 15th shot of the drug. It's my understanding that Lanreotide and maybe all Nets drug therapies only work for so...
Last active: Aug 19, 2024
Discussion
NETs with Liver metastasis: starting lanreotide injections
Had what I thought was a bad stomach bug, turned out to be a neoindicrine tumor blocking my small intestine with lymph node involvement. Had...
Last active: Nov 1, 2025