Anyone have side effects after Lanreotide injection?

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 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.

Hello @genovaldi and welcome to the NETs support group on Mayo Connect. There is an article on this topic from Mayo Clinic. Here is a quote:

"This medicine may increase your risk for heart and blood vessel problems, including hypertension and a slow heartbeat. This may cause chest pain or discomfort, headaches, dizziness, or blurred vision. You might need to measure your blood pressure at home. If you think your blood pressure is too high or if your heartbeat is too slow, call your doctor right away."
Read more here https://www.mayoclinic.org/drugs-supplements/lanreotide-subcutaneous-route/precautions/drg-20071321#:~:text=This%20medicine%20may%20increase%20your%20risk%20for%20heart%20and%20blood,your%20blood%20pressure%20at%20home.

@gsm13161 @allan2022 @gneiss50 @californiazebra @ginnyos @amandafl may also have experiences to add.

As you are new to this discussion group, please share a bit about your history with NETs. For example, how long ago were you diagnosed. What treatments, other than the monthly injections, have you had?

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.

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.)

Hello @cmhgiddy24 and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. I found Mayo Connect when I was facing my third surgery for NETs and it was great to find others who could share this journey with me.

It is good to hear that the treatment you've had is keeping the cancer at bay. I'm sure that you are pleased with these results. The side effects of the injections do sound problematic. Perhaps, at your next oncology appointment, you can talk about these side effects and ask if there is anything that can be done to lessen these post-injection problems.

You mentioned that your oncologist has probably not treated many NETs patients, like yourself. I would highly recommend that you scheduled at least one in-person or virtual appointment with a NET specialist to review your situation and determine the best treatment options going forward.

Mayo Clinic has NET specialists at all three of their locations. If you would like to obtain a consultation to review your records, here is a link to getting an appointment at a Mayo location, http://mayocl.in/1mtmR63. If, for any reason, you cannot be seen at a Mayo location, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Is a consultation with a NET specialist, something you might consider?

Hi, thank you! Yes, I do intend to address all my side effect issues with the medical oncologist next week and see what she says and I AM very pleased my treatment is keeping things at bay. I am also interested in possibly speaking with a NET specialist at some point, but I don't live near any Mayo Clinic locations. I'm very familiar with Jacksonville as my husband and I helped family out there for several months after my brother-in-law had a lung transplant a few years back so if I can be in the area again for a time, I would definitely pursue. Also, my nephew works in radiology at Ohio State University Med Center and I spoke to a dr. there who was a friend of his (he's since left) who was a NET specialist and he pretty much concurred with my treatment the way things are being handled right now. It's really tough to get in there anyway so unless my situation would worsen significantly or I would need different treatment, I'll probably stay where I am for now. The hospital system here where my surgical oncologist is located, is just starting to venture into the NETS field. He is very on top of his game, I have alot of respect there, and he has already told me that if I end up needing any different treatment than what I'm getting, I will probably need to go to OSU for it anyway. I could also go to Cleveland Clinic, but I would probably choose Mayo if possible, very impressive there. I am very aware of my options and thank you for responding, I really appreciate it!

I am glad that you are aware of your options, @cmhgiddy24. You sound like a proactive person who is engaged in their medical treatment and that is very important. You might also consider attending Mayo Clinic's virtual support group that meets on the first Thursday of each month. It originates from Jacksonville and is facilitated by a Mayo Clinic social worker. There are often guest speakers from Mayo Clinic who speak on various topics related to NETs with a question/answer time and then time for the members to talk about their questions and problems with each other. I'm sure you would find helpful information and also support from that community.

I look forward to hearing from you again. Will you continue to post as you have questions or concerns?

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