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

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.

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?!

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.

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!

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.

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. 🙏

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!

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.

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

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.