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

I have LiverNET with approx 25 cancerous nodes. was diagnosed in very early Jan of 2023. I've been through 4 rounds of intense chemo (April-June) and receive a lanreotide injection every 21 days. MRI to be scheduled soon to check on progress. My side effects were initially diarrhea and fatigue, though my Dr said the symptoms will dissipate over time. He was right. I've had 9 injections and my only symptom now is a light fatigue for the first 48 hours. Stay well - Tom

Hello @misti and welcome to the NETs support group on Mayo Clinic Connect. I so understand you when you say, "What a shock!" Most of felt the same way when we were first diagnosed.

By way of introduction, I have had three small NETs in the upper digestive tract. I am now a 20-year survivor of NETs and doing well. My only treatments have been surgeries over a 20-year period, so I have no experience with the monthly injections, however, many of our members of this group have taken the monthly injections with very good results.

If you are comfortable sharing more information, I would be interested in knowing what symptoms you were having that led to your diagnosis. For many of us with NETs, there we no symptoms, the NETs were found during a scan or other test for other reasons. Was that your case as well?

I started having some diareah,bloating and constipation and just stomache cramping. I would take stuff for constipation and listen to all the t.v. ads thinking it could be IBS. Finally I decided to go to the ER didnt want to wait. and the did a Mri and saw the mass.

Please continue to post with any questions or concerns, @misti. Many of us have had NETs for a number of years, and this group is outstanding in their support and encouragement.

I look forward to hearing from you again as you continue on this NETs journey. I'm wondering, have your symptoms improved since your surgery and injections? Are you able to eat and maintain your weight?

@liefylaura, you might find these related discussions helpful

- First Lanreotide Injection: Any tips about diet and side effects?
https://connect.mayoclinic.org/discussion/first-lanreotide-injection/
- Questions about carcinoid treatment and diet
https://connect.mayoclinic.org/discussion/70-character-limit/
- NETs what to eat? What to avoid?
https://connect.mayoclinic.org/discussion/nets-what-to-eat-what-to-avoid/
How is your family member doing?

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!

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.

Hello Teresa,

I had a CT scan in the hospital not a PET scan. The scan showed a small bowel obstruction which could be attributed to the scar tissue/ adhesions from the surgery. The surgery to remove the tumor was on June 29th,2023 - they removed some of my small intestine and colon. They officially diagnosed me on July 10th and this was my first treatment.

Thank you
Joy