1. < Neuroendocrine Tumors (NETs)
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Anyone have side effects after Lanreotide injection?

Posted by genovaldi @genovaldi, Jul 3, 2024

I have been doing injection for a year now but as of a few months ago after the injection I am feeling very sluggish, and this would happen before the injection and now it's after. I did tell my doc and now I TAKE octreotide as needed. Anyone else have this?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 26 9:14am
In reply to @christobelle89 "@hopeful33250 When I was first diagnosed, I had had an endoscopy in late 2016 because of..." + (show)
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@hopeful33250
When I was first diagnosed, I had had an endoscopy in late 2016 because of GERD like symptoms. My gastroenterologist recommended an EUS and when they did the biopsy they discovered I had a NET of the pancreas. When I investigated places for surgery I decided on Hopkins as I live in Virginia and it was the nearest major cancer center with a team approach for followup care after surgery. I have gotten a CT at a Hopkins facility every year and have felt fine. After the CT in late November 2025, they requested an MRI and then a PET. I had mets to the liver. I had a biopsy to determine if it was the same cancer and to decide if I was a candidate for "debulking". It was decided that because of the number mets and their being in both lobes that I was not a candidate. The cancer is the same slow growing cancer. I was started on Lanreotide in March. I have felt fine until about a month ago. I have noticed my blood pressure is exceptionally high, my joints in my hands hurt, I am very tired, and I have more dark spots on my face and those that are there have darkened. The pain in my hands is ameliorated with Tylenol but the blood pressure is scary. I am monitoring it at home and my local oncologist, my PC and my cardiologist are aware of it.

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@christobelle89

There are other members on Connect who have been given Lanreotide or Octreotide. Here is a link to a discussion that might be of interest to you:
--Octreotide or Lanreotide
https://connect.mayoclinic.org/discussion/octreotide-or-lanreotide/
Here is some information about PRRT treatment, which has been effective for many members with NETs that have metastasized to the liver and/or pancreas:

--PRRT Treatment, how does it work?
https://connect.mayoclinic.org/discussion/prrt-treatment-how-does-it-work/
--PRRT Treatment
https://connect.mayoclinic.org/discussion/prrt-treatment-2/
In these discussions about PRRT, you will meet members who have had good results, including @vinnie694, @dbamos1945, and others.

Was Lanreotide the first treatment that was suggested?

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sposieneedshelp | @sposieneedshelp | 14 hours ago

HI,
Newly diagnosed with NET small bowel cancer metatatsized to liver. Originally thought to be Stage 4 bladder cancer ...which hopefully, has been under control with TURBT. (Will find out how successful at the end of the month.) I have NO symptoms of small bowel cancer ... (perhaps some fatigue) but no flushing, no nausea, no pain... and am worried about starting monthly injections ...which frankly, seem worse than managing the disease. Wondering if anyone has experienced a similar experience and I want to know about QUALITY of life.
Thank you.

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2 replies
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vinnie694 | @vinnie694 | 3 hours ago
In reply to @sposieneedshelp "HI, Newly diagnosed with NET small bowel cancer metatatsized to liver. Originally thought to be Stage..." + (show)
Profile picture for sposieneedshelp @sposieneedshelp

HI,
Newly diagnosed with NET small bowel cancer metatatsized to liver. Originally thought to be Stage 4 bladder cancer ...which hopefully, has been under control with TURBT. (Will find out how successful at the end of the month.) I have NO symptoms of small bowel cancer ... (perhaps some fatigue) but no flushing, no nausea, no pain... and am worried about starting monthly injections ...which frankly, seem worse than managing the disease. Wondering if anyone has experienced a similar experience and I want to know about QUALITY of life.
Thank you.

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@sposieneedshelp I was diagnosed 3 1/2 years ago with almost the same started in the small intestines and metastasize to the liver. I also have carcinoid syndrome.. The monthly injections control the hot flashes, and for about 2 years controlled the growth and spread of the tumors. Last year I had Lutathera radiation which after a year is still shrinking the tumors. I am seeing a NET specialist at Mayo Jacksonville. As far as quality of life, I feel I haven't suffered any loss, just a little more fatigued than I usually had.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 49 minutes ago
In reply to @sposieneedshelp "HI, Newly diagnosed with NET small bowel cancer metatatsized to liver. Originally thought to be Stage..." + (show)
Profile picture for sposieneedshelp @sposieneedshelp

HI,
Newly diagnosed with NET small bowel cancer metatatsized to liver. Originally thought to be Stage 4 bladder cancer ...which hopefully, has been under control with TURBT. (Will find out how successful at the end of the month.) I have NO symptoms of small bowel cancer ... (perhaps some fatigue) but no flushing, no nausea, no pain... and am worried about starting monthly injections ...which frankly, seem worse than managing the disease. Wondering if anyone has experienced a similar experience and I want to know about QUALITY of life.
Thank you.

Jump to this post

Hello @sposieneedshelp, and welcome to the NETs support on Mayo Clinic Connect. I see that @vinnie694 has already responded to your question about monthly injections. We have many members of Connect who have used the monthly injections and have had an improvement in symptoms, and some have also had a reduction in the size of tumors. As @vinnie694 mentioned, he later had PRRT treatment, which, after a year, is also shrinking tumors.

What are your major concerns about beginning the monthly injections?

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