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.

Profile picture for christobelle89 @christobelle89

@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?

REPLY

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.

REPLY
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

@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.

REPLY
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?

REPLY
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

@sposieneedshelp
I like your moniker! I can only tell you my experience but here is another link which might be helpful.. Lanreotide did have some side effects but the shots reduced my Carcinoid Syndrome Symptoms and felt like a gift. I do have two days of a sort of woozy feeling afterward and a bit of a change in bowels but it is well worth it. Taking Lanreotide means I also get more blood work so that we stay on top of things. My quality of life really improved with Lanreotide. I know others get other side effects but I have been fortunate. It is good for lowering tumor progression too.

Here is some information I bring to the nurses giving the Lanreotide shot. I shortened it. https://www.ncf.net/post/practical-tips-for-patients-on-the-shot-somatostatin-analog

Alternate between left and right for each dose.
Tip: LACNETS founder, Giovanna Joyce Imbesi shared this trick: use ROLE (Right = Odd months, Left = Even months). If reversed, RELO and LORE works just as well. And yes, there are some months where this falls apart like long months that have 2 shots during the 28-day cycle. Whatever your system is, the key is to keep track of which side is injected each month.
Receiving the injection while lying down will keep the gluteus muscle relaxed. To keep it from tensing while receiving the injection in a standing position, place all your weight on the leg NOT receiving the injection.
The time removed from the refrigerator can be verified yourself. The pharmacy or nurse may write the “Out Time” on the box, meaning the time it is taken out of the refrigerator.
Ask questions of any new person before allowing them to administer your shot. A poorly administered shot can be costly and could add to discomfort during or after the injection. Worse yet, it may mean not receiving the full benefit of the medicine until the next dose (usually 28 days).
Here are some questions to ask your nurse before receiving the shot:
Have you given this before?
Have you been trained on the process to prepare and administer this medication?
Do you squeeze or pinch the cheek? Seperate
Plunger time — how long? Count of 20

Note: You can feel to make sure there are no lumps from past shots.
Gently draw their attention to the prescribing information if any items are missed.
Somatuline© Depot syringes have a needle retraction mechanism. When the plunger is bottomed-out, make sure the nurse keeps downward pressure on the plunger, remove the syringe needle from you, and then relieve pressure on the plunger. Failure to do so will retract the needle and your skin into the syringe body, giving a huge (and unnecessary) skin pinch.
Once you’ve received the injection, here are some Do’s, Don’ts, and things to watch out for:
Make sure the nurse does not massage or rub the injection area after the injection.
Afterwards, walk around for ~ 20 minutes. Heating or ice will help reduce any residual pain.
Tip: Remember, Do NOT rub/massage the area.
You may feel tired after the injection or experience other symptoms such as headache or change in bowel habits for several hours or days, even after taking the shot for many months.
. I take it with me to appointments.. It has helped with new people giving the shot..
Giving/Getting the shot:
Alternate between left and right for each dose.
. Whatever your system is, the key is to keep track of which side is injected each month.
Receiving the injection while lying down will keep the gluteus muscle relaxed. To keep it from tensing while receiving the injection in a standing position, place all your weight on the leg NOT receiving the injection.
The time removed from the refrigerator can be verified yourself. (I insist on more than an hour. My center takes it out of the fridge 3 hours ahead) The pharmacy or nurse may write the “Out Time” on the box, meaning the time it is taken out of the refrigerator.
Ask questions of any new person before allowing them to administer your shot. A poorly administered shot can be costly and could add to discomfort during or after the injection. Worse yet, it may mean not receiving the full benefit of the medicine until the next dose (usually 28 days).
Here are some questions to ask your nurse before receiving the shot:
Have you given this before?
Have you been trained on the process to prepare and administer this medication?
Do you squeeze or pinch the cheek? ( always stretch skin)
Plunger time — how long? Count of 20

Note: You can feel to make sure there are no lumps from past shots.
Gently draw their attention to the prescribing information if any items are missed.
Somatuline© Depot syringes have a needle retraction mechanism. When the plunger is bottomed-out, make sure the nurse keeps downward pressure on the plunger, remove the syringe needle from you, and then relieve pressure on the plunger. Failure to do so will retract the needle and your skin into the syringe body, giving a huge (and unnecessary) skin pinch.
Once you’ve received the injection, here are some Do’s, Don’ts, and things to watch out for:
Make sure the nurse does not massage or rub the injection area after the injection.
Afterwards, walk around for ~ 20 minutes. Heating or ice will help reduce any residual pain.
Tip: Remember, Do NOT rub/massage the area.
You may feel tired after the injection or experience other symptoms such as headache or change in bowel habits for several hours or days, even after taking the shot for many months.

( I and many others do not get injection symptoms. Wishing for you that you too receive a better quality of life with Lanreotide.

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