1. < Neuroendocrine Tumors (NETs)

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

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

kevinmonroemi | @kevinmonroemi | Apr 25 4:25pm
In reply to @kaiulani "The same thing happened to me: I’ve been on these shots for 13 months already but..." + (show)
@kaiulani

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”.

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I am wondering where your tumors are Liver?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 25 4:01pm
In reply to @ds231 "Hi, I'm new to the group but was reading about the NETs but I've never heard..." + (show)
@ds231

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.

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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?

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1 reply
cordelia73 | @cordelia73 | Apr 25 1:52pm
In reply to @kaiulani "The same thing happened to me: I’ve been on these shots for 13 months already but..." + (show)
@kaiulani

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”.

Jump to this post

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.

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kevinmonroemi | @kevinmonroemi | Apr 25 8:37am
In reply to @vickihorseman "Ive been on Lanreotide every 3 weeks since last year and still struggle with diarrhea and..." + (show)
@vickihorseman

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?

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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

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kevinmonroemi | @kevinmonroemi | Apr 25 8:30am
In reply to @cordelia73 "And had the tumors growed? Do you feel ok always?" + (show)
@cordelia73

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

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

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vinnie694 | @vinnie694 | Apr 25 8:25am
In reply to @ds231 "Hi, I'm new to the group but was reading about the NETs but I've never heard..." + (show)
@ds231

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.

Jump to this post

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?

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1 reply
vinnie694 | @vinnie694 | Apr 25 8:10am
In reply to @kaiulani "The same thing happened to me: I’ve been on these shots for 13 months already but..." + (show)
@kaiulani

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”.

Jump to this post

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..

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vickihorseman | @vickihorseman | Apr 25 5:36am

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?

REPLY
1 reply
ds231 | @ds231 | Apr 24 2:30pm

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.

REPLY
3 replies
sammydj | @sammydj | Apr 24 12:38pm

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.

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