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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nana120 | @nana120 | Aug 14 8:30am
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.

REPLY
vinnie694 | @vinnie694 | Aug 15 5:58am
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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joy5877 | @joy5877 | Aug 16 7:34am
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.

Jump to this post

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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