1. < Neuroendocrine Tumors (NETs)
Profile picture for genovaldi

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 micahnes
micahnes | @micahnes | Jul 22 10:53am

First injection 3 weeks ago. Side effects:
Lightheaded when standing / Dizziness
Headache that comes and goes
Tingling in extremities and feeling cold
Lower heart rate - resting 45 bpm, sleeping 40 bpm ( use a smart watch)
Low energy

Most of the above are recognized side effects, except the tingling. Does anyone else have this, as a side effect or from the pNET?

REPLY
2 replies
Profile picture for jessie1990
jessie1990 | @jessie1990 | Jul 20 11:41am
In reply to @reinmac "@hopeful33250 not seeing a NET specialists but am seeing a very good oncologist and pulmonologist who..." + (show)
Profile picture for reinmac @reinmac

@hopeful33250 not seeing a NET specialists but am seeing a very good oncologist and pulmonologist who both have lots of experience with NET and works with The James Cancer center at OSU

Jump to this post

@reinmac hi 😊 my name is Jessica I'm 35 years old been diagnosed with typical net in July last year had surgery in dec I've had to have 2 lobes removed over where it was sitting I haven't needed any other treatment but I was due a ct last month still waiting as there is a delay in the hospital I attend I hope you feel better soon 🥰

REPLY
Profile picture for reinmac
reinmac | @reinmac | Jul 20 10:26am
In reply to @hopeful33250 "Hello @reinmac, and welcome to the NETs support group on Mayo Clinic Connect. I'm glad to..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @reinmac, and welcome to the NETs support group on Mayo Clinic Connect. I'm glad to hear that your coughing problem was correctly diagnosed. I hope that with the right treatment, you will begin to feel better.

On Mayo Clinic Connect, we have a separate discussion groups dedicated to NETs in the lungs. You will undoubtedly find it helpful to meet others who have a similar diagnosis.
Here are some links to those discussions:
--I am 75 and have carcinoid tumors NET in the lungs
https://connect.mayoclinic.org/discussion/i-am-75-and-have-carcinoid-tumors-net-in-lungs/
--Anyone with lung NETs experience weight loss?
https://connect.mayoclinic.org/discussion/lung-carcinoid-weight-loss/
--Lung NET with COPD
https://connect.mayoclinic.org/discussion/lung-net-with-copd-treatment-options/
I am tagging some Connect members with lung NETs such as @emilyfaith, @lisaonthegoco, @jessie1990, so that they can share their experience with you.

Are you currently seeing a NET specialist?

Jump to this post

@hopeful33250 not seeing a NET specialists but am seeing a very good oncologist and pulmonologist who both have lots of experience with NET and works with The James Cancer center at OSU

REPLY
2 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 20 9:31am
In reply to @reinmac "I am new to this support group, been diagnosed with 2 typical neuroendocrine tumors in bilateral..." + (show)
Profile picture for reinmac @reinmac

I am new to this support group, been diagnosed with 2 typical neuroendocrine tumors in bilateral bases of my lungs and many(too many to count per cat scan report) scattered throughout lungs. Gallium PET showed uptake in bigger bilateral basilar nodules which they biopsies a few weeks ago hence the diagnosis confirmed. Remains to be only in lungs right now. Seen Oncologist today going to start Lanreotide injections next week monthly have had this chronic cough told it was Asthma for 30 years but got increasingly worse cough in 02/2026 to point where I was passing out esp with work and talking on phone with my job for 7-8 hour/day. Appreciate all the reviews of side effects will keep you posted how has the medication helped with your coughs

Jump to this post

Hello @reinmac, and welcome to the NETs support group on Mayo Clinic Connect. I'm glad to hear that your coughing problem was correctly diagnosed. I hope that with the right treatment, you will begin to feel better.

On Mayo Clinic Connect, we have a separate discussion groups dedicated to NETs in the lungs. You will undoubtedly find it helpful to meet others who have a similar diagnosis.
Here are some links to those discussions:
--I am 75 and have carcinoid tumors NET in the lungs
https://connect.mayoclinic.org/discussion/i-am-75-and-have-carcinoid-tumors-net-in-lungs/
--Anyone with lung NETs experience weight loss?
https://connect.mayoclinic.org/discussion/lung-carcinoid-weight-loss/
--Lung NET with COPD
https://connect.mayoclinic.org/discussion/lung-net-with-copd-treatment-options/
I am tagging some Connect members with lung NETs such as @emilyfaith, @lisaonthegoco, @jessie1990, so that they can share their experience with you.

Are you currently seeing a NET specialist?

REPLY
1 reply
Profile picture for Turkey, Volunteer Mentor
Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 20 8:38am
In reply to @reinmac "I am new to this support group, been diagnosed with 2 typical neuroendocrine tumors in bilateral..." + (show)
Profile picture for reinmac @reinmac

I am new to this support group, been diagnosed with 2 typical neuroendocrine tumors in bilateral bases of my lungs and many(too many to count per cat scan report) scattered throughout lungs. Gallium PET showed uptake in bigger bilateral basilar nodules which they biopsies a few weeks ago hence the diagnosis confirmed. Remains to be only in lungs right now. Seen Oncologist today going to start Lanreotide injections next week monthly have had this chronic cough told it was Asthma for 30 years but got increasingly worse cough in 02/2026 to point where I was passing out esp with work and talking on phone with my job for 7-8 hour/day. Appreciate all the reviews of side effects will keep you posted how has the medication helped with your coughs

Jump to this post

@reinmac Hi and welcome to Mayo Connect. Sorry to hear about your diagnosis. It seems like you have a plan moving forward. When do you start the shots this week? Is your oncologist a NETs specialist?

REPLY
Profile picture for vinnie694
vinnie694 | @vinnie694 | Jul 20 6:56am
In reply to @zacharycat "Felt very tired most of yesterday after the injection (might also be bad air and hot..." + (show)
Profile picture for zacharycat @zacharycat

Felt very tired most of yesterday after the injection (might also be bad air and hot weather) but today so far not so bad. The downside was that the medication crystals got stuck in the needle so they had to inject me twice. Now both hips are sore when I walk. Nurse says this happens about one time in eight though for me it was the first.

Jump to this post

@zacharycat I've been getting 2 shots of Ocreotide every 28 days for over 3 years. The last 2 times I went there were issues with the medication getting stuck in the needle. I'd been the same nurse for all 3 years. Maybe an issue with the manufacturer?

REPLY
Profile picture for maeve115
maeve115 | @maeve115 | Jul 17 11:28am
In reply to @zacharycat "@maeve115 I live close to the hospital and normally bike ride there. Yesterday I took the..." + (show)
Profile picture for zacharycat @zacharycat

@maeve115 I live close to the hospital and normally bike ride there. Yesterday I took the bus though. Saw very few people outside compared to most summer days.

Jump to this post

We are in the NorthEast and it has been a hot (couple 100 degree days) and recently smoke filled too. We have seen "very few people outside compared to most summer days too". Hope your hips are soon feeling better and heat and smoke decrease so you can get back on the bike.

REPLY
Profile picture for zacharycat
zacharycat | @zacharycat | Jul 17 10:33am
In reply to @maeve115 "@zacharycat Omigosh What an injection ordeal.. Sorry you are still getting hip soreness too. May it..." + (show)
Profile picture for maeve115 @maeve115

@zacharycat
Omigosh What an injection ordeal.. Sorry you are still getting hip soreness too. May it soon pass. I have been thinking of everyone who is dealing with wild fire smoke traveling long distances. Thinking especially those NET patients dealing with lung issues. May everything clear up soon for you.

Jump to this post

@maeve115 I live close to the hospital and normally bike ride there. Yesterday I took the bus though. Saw very few people outside compared to most summer days.

REPLY
1 reply
Profile picture for maeve115
maeve115 | @maeve115 | Jul 17 9:28am
In reply to @zacharycat "Felt very tired most of yesterday after the injection (might also be bad air and hot..." + (show)
Profile picture for zacharycat @zacharycat

Felt very tired most of yesterday after the injection (might also be bad air and hot weather) but today so far not so bad. The downside was that the medication crystals got stuck in the needle so they had to inject me twice. Now both hips are sore when I walk. Nurse says this happens about one time in eight though for me it was the first.

Jump to this post

@zacharycat
Omigosh What an injection ordeal.. Sorry you are still getting hip soreness too. May it soon pass. I have been thinking of everyone who is dealing with wild fire smoke traveling long distances. Thinking especially those NET patients dealing with lung issues. May everything clear up soon for you.

REPLY
1 reply
Profile picture for zacharycat
zacharycat | @zacharycat | Jul 17 7:07am

Felt very tired most of yesterday after the injection (might also be bad air and hot weather) but today so far not so bad. The downside was that the medication crystals got stuck in the needle so they had to inject me twice. Now both hips are sore when I walk. Nurse says this happens about one time in eight though for me it was the first.

REPLY
2 replies
Please sign in or register to post a reply.