1. < Neuroendocrine Tumors (NETs)

First Lanreotide Injection: Any tips about diet and side effects?

Posted by nana120 @nana120, Jul 18, 2023

Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec 2022. Like so many of us it was discovered by accident during a GI test. I received my first lanreotide injection July 6, 2023 with minimal instruction, only that I might have intestinal upset (I did) and that I would not be able to eat spicy food for the foreseeable future. I am to a have one injection every 28 days for the next 10 months. I stumbled on this site while trying to find some information about diet information and would appreciate any direction or experience the group can share.

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pamelaspalme | @pamelaspalme | Oct 2, 2023
In reply to @joy5877 "Hello, I had surgery in June to remove a tumor and then found out it spread..." + (show)
@joy5877

Hello,
I had surgery in June to remove a tumor and then found out it spread to my liver. I started injections on Wednesday September 27th and had the worst reaction - headache, stomach spasms that moved the whole way around to my back, vomiting with dry heaves and severe bloating. The pain was so bad that I ended up in the ER. PET scan showed a small blockage which they attribute to the adhesions from the surgery. I am curious if I was really blocked or if it was just a reaction.

I did read some of the side effects of the shot and experienced quite a few during the hospital stay- chest pains, erratic heart rate and sweating to name a few.

My questions are for those who experienced anything similar. I will be talking to my oncologist, but the nurse who administered the shot said there weren't any real side effects. I may be the first case - who knows.

1. Did the side effects go away after so many treatments?
2. Is there anything you can take or foods to stay away from those few days after treatment?
3. Could it be that I took the shot on an empty stomach?

Any advice or feedback would be appreciated. Have a good day and thank you in advance!

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As an anesthesia provider I have seen this happen before.

Adhesions can occur very quickly.
Please if you continue to have severe nausea vomiting and pain go to ER. this could be a serious issue.
I am sorry you are having such a hard time.
I am sending positive healibg thoughts your way.

REPLY
nana120 | @nana120 | Oct 2, 2023
In reply to @joy5877 "Hello, I had surgery in June to remove a tumor and then found out it spread..." + (show)
@joy5877

Hello,
I had surgery in June to remove a tumor and then found out it spread to my liver. I started injections on Wednesday September 27th and had the worst reaction - headache, stomach spasms that moved the whole way around to my back, vomiting with dry heaves and severe bloating. The pain was so bad that I ended up in the ER. PET scan showed a small blockage which they attribute to the adhesions from the surgery. I am curious if I was really blocked or if it was just a reaction.

I did read some of the side effects of the shot and experienced quite a few during the hospital stay- chest pains, erratic heart rate and sweating to name a few.

My questions are for those who experienced anything similar. I will be talking to my oncologist, but the nurse who administered the shot said there weren't any real side effects. I may be the first case - who knows.

1. Did the side effects go away after so many treatments?
2. Is there anything you can take or foods to stay away from those few days after treatment?
3. Could it be that I took the shot on an empty stomach?

Any advice or feedback would be appreciated. Have a good day and thank you in advance!

Jump to this post

After my fourth injection of lanreotide every 28 days I have settled into my “new normal” and have found several things I can eat without causing diarrhea. The best advice I was given from someone on this site was to take my shots with food on my stomach, so I always try to eat oatmeal or something filling before my appointment. Always avoid fatty meats (something I did not when I ate bacon after my first one), which will definitely cause diarrhea. Stick to baked or grilled chicken, fish, well cooked veggies (from the list only). When I’m experiencing issues I always revert to baked potatoes & applesauce until things settle down. Good luck figuring out your own “normal.”

REPLY
pavlina60 | @pavlina60 | Oct 2, 2023
In reply to @joy5877 "Hello, I had surgery in June to remove a tumor and then found out it spread..." + (show)
@joy5877

Hello,
I had surgery in June to remove a tumor and then found out it spread to my liver. I started injections on Wednesday September 27th and had the worst reaction - headache, stomach spasms that moved the whole way around to my back, vomiting with dry heaves and severe bloating. The pain was so bad that I ended up in the ER. PET scan showed a small blockage which they attribute to the adhesions from the surgery. I am curious if I was really blocked or if it was just a reaction.

I did read some of the side effects of the shot and experienced quite a few during the hospital stay- chest pains, erratic heart rate and sweating to name a few.

My questions are for those who experienced anything similar. I will be talking to my oncologist, but the nurse who administered the shot said there weren't any real side effects. I may be the first case - who knows.

1. Did the side effects go away after so many treatments?
2. Is there anything you can take or foods to stay away from those few days after treatment?
3. Could it be that I took the shot on an empty stomach?

Any advice or feedback would be appreciated. Have a good day and thank you in advance!

Jump to this post

@joy5877 - I just had my 7th Lan injection. First one was the worst! My experience is to have a Zofran the moment they call my name. After that - spent the day in bed, drink a LOT of fluids ( water, tea). I eat crackers and Swiss cheese the first 48 hrs. It get easier after that.
As for diets - you can eat a normal low fat diet( no red meat, fatty meals, bacon, tomatoes, aged cheeses, smoked or fermented foods). These restrictions are not really to avoid interference with Lanreotide, they are simply to aleviate the carcinoid syndrom symptoms (flushing, night sweats, diarea). Listen to your body! Maybe have a food diary! I eat banana pancakes, a spoon of honey ( when my blood sugar gets low), a piece of dark chocolate. Eat small meals often. Excercise, even if it is just walks.
We got this! 💜🦓Trust me, it gets better every month!

REPLY
krissyd | @krissyd | Feb 11 7:13pm
In reply to @kaw627 "Morning! My primary was on my ilieum which metastasized to my liver and pancreas. I was..." + (show)
@kaw627

Morning!
My primary was on my ilieum which metastasized to my liver and pancreas. I was diagnosed in April of 2022. I also get Lanreotide every 28 days. The first several months I had severe cramping afterwards for a day. I found that a heating pad helped me a lot! Now, I get the shot and I have no side effects at all. I also eat a plant based diet, no processed foods or sugar. I juice a lot and take Essiac tea and other supplements. The measurable tumors I do have on my liver have reduced in size two times.
Good luck to you and I hope this helps a bit.

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Do you mind sharing what brand of Essiac tea you used, ty

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