Anyone have side effects after Lanreotide injection?

I am struggling with exhaustion and pain in my legs as well as a weight gain of 25 lbs in less than a year
I was suppose to get a mri and pet scan in February ( 4 months after my last PRRT treatment) but I had an URI and had to cancel
Rescheduled for March
My last set of bloods were good
Neurologist did an EEG and a vascular sonogram all good
Still unknown why I get severe pains in my temples and walk to the right side on numerous occasions
Cardiologist did a stress test EKG and an echocardiogram all good
Still unknown why my BP and pulse are so erratic
My cardiologist believes it is all from the octreotide but I don’t think stopping us an option to
I remain hopeful and grateful for every day
Thank you for asking

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.

@ 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? 🙂

April also gives you time to do research so you can make a informative decision
Good luck
Be well

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

I used to get very fatigued. 30 treatments to date and the fatigue is nominal and only last a few days. Best of luck with your journey.

@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.

@dbamos1945,
I appreciate you sharing your experience and your thoughts on Lanreotide and its benefits!

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.

@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!