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!

Jump to this post

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

REPLY
nana120 | @nana120 | Aug 8 11:07am

Hello fellow NET people. I am posting this as an update to my journey. After 9 mos of lanreotide injections & 3 mos of Temozolomide my latest CT scan shows the tumor in my liver continues to grow. My NET specialist paused my treatment plans to regroup. As of yesterday I have an appointment with an IR doctor for a bland embolization & additional biopsy to determine sequencing. I always try to find the positives in my life and this treatment pause has enabled me to resume a “normal” diet and I had my first hamburger with mustard & all the veggies in over a year! I appreciate anyone who has had a bland embolization & is willing to share their experience.

REPLY
2 replies
orseijas | @orseijas | Aug 9 7:41am
In reply to @ronjake "I to had my first Lanreotide injection on July 6th after having pancreatic cancer surgery in..." + (show)
@ronjake

I to had my first Lanreotide injection on July 6th after having pancreatic cancer surgery in March of 2020. They removed most of my pancreas and my spleen as well as gallbladder as apparently future meds would of likely caused gallstones so they took it at the same time. After surgery they put me on Creon to help digest food and I must say it really does work. It has since spread to my liver hence Lanreotide. I started having gastric issues again before I even started Lanreotide so I can't tell if it makes it any worse. I upped my Creon to two pills with breakfast seems to help and still just one with other meals. If I do start to have pain I take a Gas-X and that seems to knock it out. It's really hard to identify what I can eat and what I can't since it does not seem to be consistant and I to cannot afford to lose anymore weight, fatty foods seem to be the most consistant food that give me problems.

I was not warned of side effects but I do still have a large lump about a quarter size and deep at the injection site two weeks after injection. I really hope it dissapates as I can't imagine getting these everytime I get the injection. Also, mine are prescribed for the foreseeable future.

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I have found that a heating pad at the site of the injection reduces the lump caused by the injection

REPLY
1 reply
ronjake | @ronjake | Aug 9 1:31pm
In reply to @orseijas "I have found that a heating pad at the site of the injection reduces the lump..." + (show)
@orseijas

I have found that a heating pad at the site of the injection reduces the lump caused by the injection

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Well I think my first injection was not done correctly. I have had 13 since that first one and none of those have caused a lump like I still have from the first one, been over a year and still there.

REPLY
penynah | @penynah | Aug 11 5:04pm
In reply to @nana120 "My oncologist’s nurse recommended I drink Boost for weight gain, but everything I’ve read says stay..." + (show)
@nana120

My oncologist’s nurse recommended I drink Boost for weight gain, but everything I’ve read says stay away from milk and Boost has milk in it. Has anyone had experience with it. She said there may be one that is lactose free.

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I realize this is an older post, but wanted to comment for future readers that dairy has not given me any problems. In fact I try to drink a glass of low fat milk most days. My breakfast most days is plain fat free Greek yogurt and 1/3 C blueberries. I also almost always have some kind of cheese with lunch.
In general too much fat will cause diarrhea for me and high carb or sugary foods will trigger flushing and blood pressure drops which has led to fainting twice, (plus nearly fainting a half dozen times).
(I know not everyone with NETs has carcinoid syndrome but I'm one of the lucky zebras. Lol.)
Blessings to each one of you!

REPLY
2 replies
stevestenberg31 | @stevestenberg31 | Aug 12 11:00am
In reply to @penynah "I realize this is an older post, but wanted to comment for future readers that dairy..." + (show)
@penynah

I realize this is an older post, but wanted to comment for future readers that dairy has not given me any problems. In fact I try to drink a glass of low fat milk most days. My breakfast most days is plain fat free Greek yogurt and 1/3 C blueberries. I also almost always have some kind of cheese with lunch.
In general too much fat will cause diarrhea for me and high carb or sugary foods will trigger flushing and blood pressure drops which has led to fainting twice, (plus nearly fainting a half dozen times).
(I know not everyone with NETs has carcinoid syndrome but I'm one of the lucky zebras. Lol.)
Blessings to each one of you!

Jump to this post

I just had my 20th Somatuline depot aka Lanreotide injection last week. I too eat dairy and try to avoid red meat as it gives me diarrhea. I also try to eat Greek vanilla yogurt w/ 1/4 cup organic blueberries and 1/4 cup granola almost every day. I'm convinced the yogurt helps with my digestive system. 🙏

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12 3:50pm
In reply to @stevestenberg31 "I just had my 20th Somatuline depot aka Lanreotide injection last week. I too eat dairy..." + (show)
@stevestenberg31

I just had my 20th Somatuline depot aka Lanreotide injection last week. I too eat dairy and try to avoid red meat as it gives me diarrhea. I also try to eat Greek vanilla yogurt w/ 1/4 cup organic blueberries and 1/4 cup granola almost every day. I'm convinced the yogurt helps with my digestive system. 🙏

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I appreciate you sharing your eating plan, @stevestenberg31. While I have not needed the monthly injections, after my digestive tract surgery, I too have found that Greek yogurt is a great comfort food that is easily digested and good for the gut!

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