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

Im not sure. All I know is I had neuroendocrine cancer spread to my liver as well and doctor didn't give me much hope, actually no hope. So while I was taking the chemo and immunotherapy I tried the Tippens protocol and my scans were what my doctor call miraculous, she called me ecstatic she was so happy. I had ask her about the Tippens and she told me nit to take it ut could harm my liver, like chemo didnt, but when you're given 16 weeks, you basically will try anything. My tumors shrunk, some went away completely. Last year I started back with the hot flashes, then the rash and started back gaining weight all just like before so I started the protocol again. The spots were small so no chemo, all symptoms went away and spots shrunk. I stopped the protocol all symptoms are back again. So.. it may be all coincidental but I've started back taking it. I talked to a pharmacist about it and made sure none of my meds had reactions to it and she told me what ut does ut stop the tumors from being able to firm their own blood supplies this starving them basically. So please don't take my word for it as I cant swear it is what helped me, but please do your own research. I just wasn't given much anything else. The strong immunotherapy gave me ulcerative colitus that ended me up in hospital for weeks, then the steroids to help that gave me all kinds of problems which again in hospital for more weeks so the protocol i figured couldnt do worse..lol I went to Moffitt cancer center in Tampa and am seeing a thoracic oncologist, then a GI oncologist for my pancreas, another one for my kidneys heck there's so many different ones I forget who they all are. I just go fir my CTs and they pass them around..lol no one thought I'd be here because it was a high grade and spread pretty fast but something stopped it. I pray for you the best..remember your mental attitude can do wonders and I told her to start with Im not dying right now, Im not ready..she offered to call my kids maybe they could help me accept my fate..now she just says I was right..lol

I am wondering where your tumors are Liver?

Hello @ds231 and @sammydj and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. It is a great place to learn from the experiences of others who are walking down this path. As NETs are not like typical cancers, the treatments are also different. As you are both new to this forum, I would like to invite you to attend a virtual NETs support group meeting next Thursday, May 1. Here is a link with information and the Zoom link,
https://connect.mayoclinic.org/comment/1289799/
@ds231
Would you share a little about how your diagnosis of neuroendocrine small cell lung cancer was found. Were you having breathing symptoms or a chronic cough?

@sammydj
How is your dad feeling now that the shots are less effective? Has he had any other treatments for his NETs other than the monthly shots?

Sorry to hear this, one question was you neuroendocrine tumor "well differentiated or poor differentiated"? I really hope you can start the PRRT soon, will pray for you.

Taking the shot is literally a pain in the butt! I am like you no more muscle tone! Best tip I got was take all the weight off the foot on the side you are receiving the shot. I find you can never really be ready for it even though you know it’s coming! The person giving the shot matters some are smooth some aren’t. Small price to pay though to control the horrible symptoms. Are you sure they aren’t going too deep I don’t usually have pain afterwards

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

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?

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..

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?

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.