Hello @joy5877 and welcome to the NETs support group on Mayo Connect. I'm pleased that you found this forum, so that you can have support and encouragement as you deal with this rather rare diagnosis. I see that you had a lot of pain after the shot, however, I also see that you had a PET scan in the ER which showed a small blockage. As you may know, blockages can also produce severe pain. Blockages are very common after any intestinal surgery.

I will request that this post be moved to a discussion group that was started by other members who take Lanreotide injections. You will find lots of members there who have experienced side effects, of different types, after their first Lanreotide injection.

You might also be interested in reading the following discussions:
https://connect.mayoclinic.org/discussion/does-anyone-else-get-bloating-and-sharp-abdominal-pain-from-nets-or-la/
https://connect.mayoclinic.org/discussion/diet-restrictions-with-lanreotide/
What type of surgery and other treatments have you had since you were originally diagnosed with NETs? How long ago was your surgery and your original diagnosis?

I was on lanreotide for 10 months and it was horrible! All the symptoms you described and plus constant diarrhea. I finally told my oncologist I want off and I did! It took me a couple of months to get back to a “reasonable normal “. Yes I still get diarrhea occasionally and occasionally night sweats but it wasn’t worth taking the lanreotide! As I understand it the lanreotide doesn’t shrink the tumors or stop it from spreading so if it’s only for the side affects of the cancer it’s not worth it to me. The side affects of the cancer weren’t half as bad as the side effects of lanreotide (at least for me)

I started Somatulin/ Lanreotide Feb 15, 2023. My side effects are minimal now. However, the first few months had similar side effects. Went to ER 4/20 and CT scan showed SI blockage resulting in emergency surgery. So your extreme side effects could be from the blockage. I'm told the most common side effects is diarrhea only.

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.

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.”

@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!