Anyone have side effects after Lanreotide injection?

Hi all! This is my first post so I probably won't be brief, but I have followed all commentary on NETS Support with great interest! I have been on Somatuline Depot injections since Jan. I just had my 6 mo. scans and it IS working to keep my cancer at bay. However, I pretty much agree with all commentary above, SO many side effects from it, things to monitor, from within a day to 2 weeks of having my injection. Sluggishness is high and energy level is so very low. Ask my husband. Much constipation and terrible painful gas following the injection, many digestive issues which I now attribute more to my injection than my cancer. I recently had a hernia surgery and my preadmission EKG showed bradycardia, low heartrate, which I didn't have before. I also had a very low heartrate event in the hospital. My glucose so far has tested as normal and I also do not have EPI, yet anyway. My next oncology appt. and injection are next week and also many labs are due so we can see more what's going on, or not? I'll keep you posted. Bottom-line, I don't think any one of us are imagining any of these things, many variables for each situation and that is the challenge. (Background on me, I am 73. Last summer was having severe stomachache on my left side that was not going away. Had a cat scan, MRI, PET scan and liver biopsy that ultimately showed secondary liver NETS. I had multiple liver resections and exploratory surgery last Oct. where primary NET was found in my pancreatic tail and distal pancreatectomy was done also. My cancer was diagnosed as primary non-functioning PNET, liver mets / pT1, pN0, pm1a, grade 2, stage IV. My pancreas is now clear, but I still have a sprinkling of stuff in my liver, thus the lanreotide treatment. My oncology surgeon is great and has some pretty good creds and training, but what I have is not very common in my city so I'm not sure my oncologist has treated many people like me.)

I have been on lanreotide injections for the last 15 months. It’s hard to differentiate between the cancer symptoms and the injection side effects.
What I have learned is that the lanreotide can have effects on your glucose levels as well as gut enzymes. If you can control these changes it’s a viable way to counter the symptoms of NET/NEC
The only other thing to be concerned with is thickening of your heart valve. An annual test for heart function is recommended for long term use of the SSA.

I was diagnosed in 2023, this was all found on accident as I was involved in a car accident and when I had an MRI they found a tumor on my tail bone. I had a boner biopsy and was confirmed cancer. after the gallium scan is when they found everything. I had no symptoms the only one was pain in my intestine and that is where the primary tumor is. I have stage 4 grad1 . the only treatments I had are my monthly Lanreotide. Starting back in February is when i was prescribed octreotide. Been at this for a year and half now. I have my ups and downs otherwise I feel ok

My sisters has now spread to the peritoneam (lining of the abdomen), and pelvic area. She had multiple lesions on her liver as well when they diagnosed her. I’m so glad that your husband is doing well. I’m not giving up hope! 🙏🏼

My husband cancer was discovered at grade 3 well differentiated stage 4. He was also given 6 months and that was June of 2022. His metastasized to his liver and he has an unchanged spot on his spine. It is two years later and he is doing quite well. He has been able to enjoy retirement and the birth of two more grandchildren. His energy level is low but he is able to do a lot now. It is a difficult process but the science is always advancing. My best to you.

I also take ocreotide injections monthly. I’m usually tired for 2 days after each shot. But I also get a severe respiratory reaction to the shot so I also take Benadryl before each shot, so I’m not too sure whets actually causing the tiredness..

Thank you @bnjncrew. I truly appreciate you taking the time to give me this information. I have watched a lot of videos of people who have taken this and most talk about extreme sensitivity to cold anything, neuropathy and nausea. My sister has a well differentiated pancreatic neuroendocrine tumor Grade 3. May I please ask what your husband’s grade was? We had a video with her oncologist and he said that he if my sister didn’t start this chemo she would qualify for comfort care/hospice if she didn’t want treatment because there has been significant growth. All of this is a lot to try and understand. He said that without treatment she would have a range of about 6 months, more like 3-5 months. It was a very hard appointment. 😭

My best to you. My husband did Folfox for 6 months. He had difficulty eating so several small meals/snacks daily is good. The nutritionist had him start drinking Fiji water as it has electrolytes and minerals more than others and that really helped but it is very expensive. This treatment did reduce the size of his tumors significantly but he stopped due to significant neuropathy. He had less side effects from CapTem but that stopped working for him. He has just finished the 4 cycle treatment of Lu 177 radiation treatments and is doing well.

Thank you and I will keep you updated.

I hope that all goes well for her on Monday, @meandmysis! Will you post again with any questions or concerns and let me know how she is doing?