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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deeteetwo | @deeteetwo | 1 day ago
In reply to @kellysg "My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been..." + (show)
@kellysg

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been Stage IV for a decade now, with metastasis to my liver, lymph nodes, and more recently very small nodules on my lung and scapula.
I was started on Octreotide, which I took for many years. My oncologist then switched me to Lanreotide. After being on that for a year, I started experiencing very painful joint pain and swelling throughout the month. I'm not sure if it was the Lanreotide or something else, but I convinced my doctor to let me go back to Octreotide. That was on February, and I do feel like the pain has gotten better.
Everyone has different symptoms and side effects so don't hesitate to let your doctor know what's going on.
As far as diet, I have always eaten whatever I want, and usually have no problems. The only thing I know I'll "pay for" is something with lots of sugar, like donuts, cinnamon rolls, etc.
Best wishes on your new journey, and always remember that NETs is NOT a death sentence! Educate and advocate!

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My gluten-free diet after a Celiac Disease diagnosis shortly after starting Lanreotide injections every 6 weeks for pituitary adenoma/growth hormone. No wheat, barley, etc., but lots of fruits, veggies, nuts, chicken, fish, Still good 3 yrs later

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vinnie694 | @vinnie694 | Mar 15 10:34am
In reply to @panorman3 "what is the difference between Lanreotide and prrt?" + (show)
@panorman3

what is the difference between Lanreotide and prrt?

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PRRT ( peptide receptor radionuclide therapy) is a radiation treatment.. I was on Ocreotide injections for over a year, it did stop the flushing, and the spread of the tumors, but a few of existing tumors were still growing. The PRRT treatments were to stop the ones from growing.. I will be receiving my third treatment at the end of the month, and the last one in May. I will also be getting a scan prior to the next treatment . The PRRT treatment I am receiving is Lutathera. There is a lot of info on line..

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nevinrbaskin | @nevinrbaskin | Mar 15 9:31am
In reply to @panorman3 "what is the difference between Lanreotide and prrt?" + (show)
@panorman3

what is the difference between Lanreotide and prrt?

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My personal experience is prrt is a four hour long session finishing up with a landreotide injection. An advanced treatment prrt, and landreotide is to keep the net at bay. There’s plenty of information available online. I have just finished prrt and still on landreotide. Both were tolerable for me and I hear different for everyone.

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orseijas | @orseijas | Mar 14 10:02am
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 use a heating pad on the injection site after lanreotide and it dissipates the lump. I may even use it for a few days if it doesn’t go away the day of the injection

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panorman3 | @panorman3 | Mar 14 5:36am
In reply to @liefylaura "Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First..." + (show)
@liefylaura

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First dose of Lanreotide. Can you share any good resources in following a low amine diet? Particularly a good substitute for nut butter, salad dressing, and any soup?!

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what is the difference between Lanreotide and prrt?

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2 replies
joy5877 | @joy5877 | Aug 16, 2024
In reply to @nana120 "Hello fellow NET people. I am posting this as an update to my journey. After 9..." + (show)
@nana120

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.

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I had my first bland embolization on August 6th. It didn't go as planned - my vessels collapsed, and I had to have a steroid and Benadryl before they could try the medicine again. They were only able to treat 1 of the 3 tumors and I will need to go back in for another one on September 30th. I was extremely sick after and ended up staying in the hospital overnight. I hope your experience is much better.

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vinnie694 | @vinnie694 | Aug 15, 2024
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!

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I am also one of the lucky ones with carcinoid syndrome.. started with Lanreotide which didn’t help had ab 15-20 episodes a day, Dr. switched me to ocreotide over a year ago, within hours the hot flashes subsided, and have been under control since then.. I pretty much can eat anything, I do try and stay away from carbs, and sugar but that is to prevent me from going on diabetes meds.. have a wonderful weekend!

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nana120 | @nana120 | Aug 14, 2024
In reply to @nana120 "Hello fellow NET people. I am posting this as an update to my journey. After 9..." + (show)
@nana120

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.

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I’m realizing that I should have changed the title of my post rather than just adding to an older one! I’m still hoping to hear from those willing to share experiences with bland embolization procedures for liver NET tumors.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12, 2024
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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stevestenberg31 | @stevestenberg31 | Aug 12, 2024
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
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