Any one with Neuroendocrine tumors getting the shot once a month?

My husband, Ron, has been taking Lanriotide every 28 days since 1/3/23. He has very few side effects. Mainly some fatigue. He is Stage 4 with tumors in his skull and throughout his body. Everything remained stable until May 2026. He will be having his 3rd PRRT treatment 9/29/26. He has some issues with food off and on but hard to know if that is from the Lanriotide or the tumors surrounding his organs. Good luck to you. God bless!

@dbamos1945
Hi, may I ask do you still have to get lanreotide or octreotide shots once a month?

I'm anxious to start PRRT. I want to! I will still have my PET/CT DOTOTATE SCAN early November but even if everything is stable, (I hope it is) I still want PRRT asap.
I want the small tumors to shrink to NXT to nothing, and the larger ones to shrink a lot! I will be using visualization which might be woo-woo but when my mom had a grade 3 astrocytoma in brain, and we were told she'd be dead within a year (this was 1989) I could not sleep. My coping skill was to picture her microphage cells taking away all the cancer. I did this for me to be able to sleep, my mom's tumor never came back. She had a positive attitude. Which must have helped her. But who knows? I doubt I cured my mom but I did that for years. 7 years passed tumor never came back! She passed from emphysema unfortunately.

@diane888: Diane, I am glad that you have had such wonderful experiences with positive thought and visualizations. I have used the same method dealing with my NET cancer disease with great results. During my PRRT Lutathera treatments these thoughts occupied my mind during the infusions and all during my treatment 6 month schedule.
The Lanreotide shots were given on a schedule regulated by my NET Specialist at City of Hope and when treatment had commenced I went back to the 28 day schedule to control NET symptoms and tumor growth. It is the only cancer drug that I take after the PRRT.
My best thoughts are with you and be diligent in your decision to use positivity and visualizations. I applaud you!

@dbamos1945

I knew this but was **hoping if the PRRT shrunk the tumors enough, I wouldn't need lanreotide for a while. Reason: my sleep has been beyond poor some nights I never sleep, worse than that: my blood pressure went sky high from the lanreotide and I'm now on Olmesartan (and I was already on a beta blocker Toprol for a decade) so I'm now on 2 BP meds. And the lanreotide has negatively affected an old injury in my knee to the point I can barely walk on it. Not the whole month but most of the month after the shot.
Plus I gained 25 lbs since June?? Weight I worked so hard to lose over the last 2 years and did it!

I started with a cortisone injection, didn't work for more than a day, and now I'll be getting 3 shots of hylauronic gel injections.

The side effects are not minimal. They affect my quality of life. The lanreotide has helped the diarrhea, the flushing, and the sever heart banging (ultra palpitations) but to what end. I now have an added bp medication, an added sleep medication, I pick up today Quiviviq, praying it works, and my knee pain. It's very frustrating. I'm going to ask if debulking or surgery can be done after my PRRT.

I appreciate your comment on the visualization and how it helped you. I do the same and will be when I start PRRT probably later this year!

I went on trizepitide for weight loss. Stopped the diarrhea dont know why that effects. Sounds like you need sleep meds.

@amygirl
I am not sure if you were responding to me (diane888) but I am NOT INTERESTED in taking Glp-1's. I had tried them once for a very short time and my gastro system felt awful. (Maybe due to unknown GI nets at the time?) But no I know of a person who went blind on these AND I literally just saw a report about lawsuits involving vision loss from glp's I've also heard recently doctors discussing them and although they don't say never prescribe these bc they are genuinely helpful for severely obese people, all of us, tons of people out here are guinea pigs taking these and they really have no idea what long term effects there are! So count me out! Yes I need a sleep medication. I picked up one today Quiviviq. I am hoping these will work. Sorry I'm not trying to cause alarm but I couldn't stay on them. Side effects were intolerable for "me" and no one really knows what the long term effects are.

@diane888 Where can I read the research that shows Glp-1s cause vision loss. Thanks.

Yes, there is active mass litigation regarding GLP-1 medications causing vision loss, but it is technically structured as a Multidistrict Litigation (MDL No. 3163) rather than a traditional class action lawsuit. Hundreds of individual lawsuits have been centralized in the U.S. District Court for the Eastern District of Pennsylvania against pharmaceutical giants like Novo Nordisk and Eli Lilly. The lawsuits allege that popular weight-loss and diabetes drugs—including Ozempic, Wegovy, Mounjaro, and Zepbound—can cause a rare eye condition leading to permanent blindness, and that the manufacturers failed to adequately warn patients.The Core of the Allegations: NAIONThe lawsuits focus on a specific condition called Nonarteritic Anterior Ischemic Optic Neuropathy (NAION), often referred to as an "eye stroke".What it does: NAION occurs when blood flow to the optic nerve is suddenly reduced, causing sudden and typically irreversible vision loss. There is currently no approved treatment or cure.The scientific trigger: Litigation spiked following a July 2024 study published in JAMA Ophthalmology that found a potential statistical link between semaglutide (the active ingredient in Ozempic and Wegovy) and an increased risk of developing NAION.

@diane888 I just thought I would mention it I found it interesting it stopped my diarrhea. Not knowing why but good for me.

@amygirl
That's really good. It did the opposite for me! I'm glad it stopped your diarrhea..