Anyone have side effects after Lanreotide injection?

She thinks we can stop the lanreotide now because she gave it to me only to stop the flushing, which it intensified. Looks as if I’ll just continue being a hot mess but hopefully without all the other side effects. I was curious as to when they’ll stop because feeling this way is not a good thing.

Am I the only one that Lanreotide makes feel horrid? I’m nauseated and constipated with a cramp in my right side that encourages my IBS to act up.
My GERD has gone berserk and scoffs at both famotidine 40 mg and Nexium.
Then there are the migraines - even Ubrelvy can’t conquer them as one headache ends and another begins within minutes. I have insomnia and am sluggish and achy all day.
I also am mightily depressed because I have an active life that I’m viewing from the sidelines.
My oncologist says I can stop these shots after this, my second one, but I need to know how long or if I will feel this way forever. I got the shots in the first place because of the severe flushing, even though no tumors appeared on the scans and my Chromogranin A level was 607. After the first shot my level was 326. My oncologist is “aware” of my situation, according to her nurse but she gave no suggestions to alleviate these reactions so I thought I’d ask y’all for assistance and information.
Blessings!

Your outcomes are so fantastic! Bless your heart, you have so much courage. If you don't mind, can I ask your age? I'm 83 and not sure my body will handle the side effects of treatments currently recommended. Again, my lung net is fairly stable right now with main side effect of flushing that occurs infrequently. The last time I had--for the first time--whole-body flushing that lasted about a half hour was the day after seeing my oncologist. Then again 2 days later. No total body flushing since then: 2 months ago. Definitely kicks in with stress, which is currently being worked on with exercise, counseling, music and CBD gummies/oil!! I'm happiest when I'm ignoring that I have Typical lung NET. My dad and oldest brother both died from pancreatic cancer, ages 71 and 66 respectively. I had bi-lateral breast removal and simultaneous reconstruction (with complications) for a tiny, Stage 0 left breast carcinoma in 2011 at age 69. I was given no choice but to remove the entire left breast. Since I had a history of benign cyst removals from both breasts, I opted -- after much teeth gnashing -- for removal of both. The biopsy doctor told me I would not need chemo or radiation, and I stuck with her words even when specialists tried to push them on me after the first major surgery. I'm a professional writer in the process of finishing a 2nd in a crime series novel with other projects done that need polishing before I try to find an agent for them. I already know that when my body has to heal from something, my mind is too tired and too drug-addled for writing. So unless they come up with something pretty quickly that doesn't screw up your system while you're killing cancer, my decision not to do treatments may already be made. I'm not a quitter. I'm drinking the teas and taking supplements and eating the right foods (which list is in flux, i.e. 1st it's eat raw veggies, then it's cook all your veggies). I'm a stubborn fighter on my own terms as long as that is possible. People like you are outstandingly brave. I'm so happy for you that your treatments have paid off.

@jutebox42 & @hopeful33250
You asked about my Neuroendocrine Cancer diagnosis - dx October 2021 biopsy in Endoscopy. Well differentiate, K 1%; Grade 1; Stage 4 (metastases to liver) primary Small intestine. Found Medical Oncologist in my small town and Started Somatuline Depot shots per month for 1 yr. Been on Lanreotide 120mg shot per 28 days ever since. April 2023 MRI showed progression of tumor growth. I went to City of Hope in Duarte, CA where NET specialist recommended treatments and further Gallium PET scan (not available near home). After much consideration I choose PRRT 4 infusion treatment offered there. From June thru December I received treatment with minimal side effects.
I am happy to report that my January 2025 MRI revealed significant tumor reduction, some tumors were no longer visable on scan, and few tumors remained stable. No further growth or metastases evident. I choose to receive MRI scans every 3 months to be vigilant regarding tumors.
I am regaining strength and happy and grateful for my treatment. I am receiving exceptional care and guidance from my NET Specialist at CoHope but continue to receive my Lanreotide treatment from my local Medical Oncologist.
I am open to answer any further questions that you have. I wish you best outcome on your cancer journey. Mayo Connect offers great support and an avenue to learn info on medications, treatments, health problems and side effects from Volunteers and fellow cancer patients. Never feeling alone in our situation is so helpful too!

What type of NET do you have and where is it located? I have Typical Lung NET. Reactions from it are not yet bad enough to start injection treatment, but I want to stay on top of effects and outcomes. Thank you.

@ teresa33250:
Lanreotide 28 day injections- I have taken them monthly since 10/21. My main concern is the boil-type sores that form around/on my nose and occasionally on my cheeks. They are firey red and very sore and remain for 4-5 days, then an infection fluid comes out and they slowly heal, but leave a scar mark. I have tried every remedy available with no luck; however, lately I have been applying retinol cream (Nutragena) on face every night. This has reduced the amount of sores and I think they heal up quicker.
I can’t swear this is caused by the Lanreotide injections, but I never had it before! I am 79 yrs old… you don’t suppose I am going through pimple puberty again , do you? 🙂

@hopeful33250: Hi Teresa, my oncologist dismisses Lanreotide causing my “boil-sore” problem. My primary internal med physician treated me for herpes with no change.
I want to be clear, as much as I hate these sores, I am grateful to receive my 28day Lanreotide injections because I trust that this universal treatment for NET patients helps me stay “syndrome free” and may be keeping my tumors stable. I would urge every NET patient to “deal with any side effects” of Lanreotide… we have a serious cancer and need to acknowledge that there will be side effects in our journey, but we must weigh the risk (or slight discomfort) with the benefit of treatment.

That sounds very uncomfortable, @dbamos1945. What does your doctor have to say about this? Are there any alternative meds that you might try?

Thank you for telling me this! I felt like a wimp because of my array of symptoms, especially because I didn’t understand the need for the injection in the first place. One symptom was sufficient to condemn me to abject misery that I’m still waiting to go away.
Luckily I have till mid-April before my oncologist makes her next decision.