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

I still do them probably forever recently I has #45

That’s probably true some people have a good response and have a stable response. My tumors continued to grow

And had the tumors growed? Do you feel ok always?

The same thing happened to me: I’ve been on these shots for 13 months already but my cancer is still advancing. I was initially diagnosed with stage 4 pNET in July of 2023. I had a Whipple in October of 2023 and, as of 24 April 2025, I’m waiting to get PRRT but, the way things are going, I seriously doubt I’ll ever live that long. But, lucky for me, in Canada MAiD (medical assistance in dying) is the gold standard of “treatment”.

My father has done the shot monthly for 18 years. For 16 years it worked well to slow the growth but tumors still grew and then the cancer became more aggressive in the last couple of years so shots are not as effective. Side effects were unpleasant for a couple of days after shot but he said not too bad.

Hi, I'm new to the group but was reading about the NETs but I've never heard of the shots and was wondering if someone can tell me the name. I had stage 4 neuroendocrine small cell lung cancer which had spread to lymp nodes, plural cavity, liver, with spots in my kidneys, pancreas, and spine. I was given 16 weeks to live 4 years ago. I took chemo, immunotherapy and radiation treatments plus on my own I tried the Joe Tippens protocol, you can Google it. I've done pretty good to still be here but now getting all the symptoms back so would love to know about this shot.

Ive been on Lanreotide every 3 weeks since last year and still struggle with diarrhea and fatigue. I just started taking Xermelo (telotristat) about a month ago and it does help with the additional diarrhea but to tell you the truth I don't think anything will get rid of it. Has anyone else notices any loss of muscle tone? And the 18 gauge needed that is used or the meds, it hurts every time and the site is sore for days sometime. I keep slowly loosing weight so there is no fat to cushion it. Anyone else having trouble with muscle tone?

I started Lanreotide February 2023, didn’t stop the hot flashes (carcinoid syndrome). Dr switched me to ocreotide in May 2023, it stopped the flashes and I had no growth and no new tumors for a few months. There were a few that were still growing slowly but still active. We talked about what would be the next phase of treatment, PRRT, (Lutathera). Next decision was when, I was told there was no rush in deciding.. I had my first treatment in December 2024, and after my 2nd treatment they were no new tumors no growth, and were actually shrinking.. My last treatment is next month.. Don’t give up hope there are many different treatments out there..

Is the Joe Tippens protocol for neuroendocrine cancer? It looked like it was for pancreatic cancer.. My tumors metastasized to my liver.. When I received the results from the biopsy it showed neuroendocrine cancer, My doctor was relieved, basically said I have , Neuroendocrine cancer that spread to my liver (cancer in the liver) I don’t have liver cancer.. the prognosis for liver cancer was not good.. I was referred to Mayo to a Neuroendocrine specialist, and he totally explained the differences… Are you seeing a Neuroendocrine specialist?

The tumors did grow and I am tired for a few days after the shot.