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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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)
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@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.

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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.

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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)
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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.

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@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?

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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)
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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

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@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?

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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)
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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

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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?

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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)
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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?

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@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

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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)
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@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

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@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 🥰

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micahnes | @micahnes | 5 days ago

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?

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maeve115 | @maeve115 | 5 days ago
In reply to @vinnie694 "I also take ocreotide injections monthly. I’m usually tired for 2 days after each shot. But..." + (show)
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I also take ocreotide injections monthly. I’m usually tired for 2 days after each shot. But I also get a severe respiratory reaction to the shot so I also take Benadryl before each shot, so I’m not too sure whets actually causing the tiredness..

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@vinnie694
Vinnie, I suspect that fatigue is the most reported side effect of the shot. I get it too. Adding a needed Benadryl certainly could increase the usual shot fatigue. I use a four hour short acting Benadryl substitute which is over the counter and purchased through Walgreens. It is potent just enough to get me over the hump. Some folks can do the full strength Benadryl but I would be out like a light. My Doctor has agreed on this. Fortunately on the third day after the shot, I rise again to my regular NET tiredness!! Wishing we all feel energized in some inexplicable way !

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maeve115 | @maeve115 | 5 days ago
In reply to @micahnes "First injection 3 weeks ago. Side effects: Lightheaded when standing / Dizziness Headache that comes and..." + (show)
Profile picture for micahnes @micahnes

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?

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@micahnes
That is a list of side effects. I am so sorry that you are experiencing all of this. This list seems to be worthy of reporting to your Doctor.. You deserve an explanation and reassurance. Hopefully you will get answers, monitoring and some solutions too.

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