r/neuroendocrinetumors • u/MrBomb98 • Jul 24 '25

Using Ozempic during Neuroendocrine Tumor

THIS IS NOT MEDICAL ADVICE — DON’T CHANGE ANY MEDICATION WITHOUT TALKING TO YOUR DOCTOR

My mom has a type 2 diabetes for a few years, and for the past 2 years she's been using Ozempic to help manage her blood sugar levels.

2 months ago, she was diagnosed with pancreatic neuroendocrine tumor (PNET) and she is about to start PRRT in 2 weeks.

During this week visit we were advised to pause taking Ozempic for now, at least until we know more about her tumor, because relatively new research show that semaglutide (the active ingredient in Ozempic and similar drugs) might promote the growth of certain neuroendocrine tumors.

  • I'm not in any way an expert in this field and I don't suggest changing anything in your meds without consulting with your oncologist/Endocrinologist first.
  • I thought that because Ozempic is relatively common in handling diabetes it was important to raise awareness and people should know this and consult with their doctors about alternatives.
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5

u/scormegatron Jul 24 '25

Yeah I’ve seen this come out in at least one recent study.

https://netrf.org/2024/12/17/research-reveals-potential-risks-of-popular-glp-1-medications-for-some-with-neuroendocrine-cancer/

2

u/Silent_Scratch_8535 Jul 25 '25

Would this apply to folks taking trizepitide (zepbound) too?

1

u/jack_harbor Aug 04 '25

I saw this study as well, interestingly another study showed that GLP-1 agonists provide a significant survival advantage in patients with NETs:

https://www.mdpi.com/2072-6694/17/9/1593

I don’t think anyone knows the answer honestly, it’s too early to know.

4

u/FaithSlayer6 Jul 24 '25

Again not advice here dont go jump on the Wegovy/Ozempic/GLP1 train, But I started taking it in Feb and have had the opposite results. My latest scan showed a decrease in my liver Mets. (like 1-2mm reduction in my sub centimeter tumors) I also had a reduction in my gastro symptoms (TMI but i went from having loose stools daily - to less than once per month.) My Net specialist approved my GLP1 before i filled the script and I am working with him and my PCP and we are monitoring. This is going to be unique to each person. Please please dont take anyone's word for it - go talk with your doctor(s).

1

u/MrBomb98 Jul 24 '25

Did you do any other treatment during this time?

3

u/FaithSlayer6 Jul 24 '25

Firstly - I was diagnosed in early 2021 and had multiple large mets and the primary (small bowel) removed via surgery in July of 2021. I've been on lanreotide injections every 4 weeks since 2021. And I get MRIs 2-3x annually and 1 Pet Dotatate annually. Prior imaging showed I have about 12 visualized liver mets. Those were stable or growing 1-2mm every year. The largest was 1.2 centimetres (12mm.) Other than lanreotide I haven't taken anything for the cancer - unless you count Imodium and Zofran for the carcinoid symptoms. (edited to add) I have no Pancreas involvement. I think that should be a huge consideration here.

1

u/Large-Ad-641 Jul 28 '25

I was prescribed Xermelo for the carcinoid symptom (diarrhea) that the 1x month Octreotide injection was not resolving fully.

1

u/mndapnda Jul 24 '25

I was on Liraglutide while having an appendix NET but it was a serotonin one. While nothing can be confirmed, it did likely protect my pancreas from it spreading and did alleviate some of my symptoms. I read through the article and it does make sense to not be on a GLP-1 drug while having a insulinoma NET that expresses high levels of GLP-1. I did get oncologist clearance to be on zepbound as it does worry me about a potential link.

2

u/syzygy96 Jul 24 '25

I was in a similar boat. Was put on ozempic in late 2023 because my sugars were consistently high, six months later diagnosed with a very large (19cm, low grade 3) pNET.

Post surgery, I was referred to an endocrinologist at UCSF who sees many of the NET patients there. He said the evidence is not rock solid yet, but there is some likelihood that glp agonists can amplify growth rates of pNET tumors, and it's possible in my case the size was influenced by me using it.

He recommended I stay off it for now, and revisit later if more evidence comes out one way or either.

1

u/Large-Ad-641 Jul 28 '25

I am borderline Type 2 Diabetes (note to self, annual checkup and blood testing should NOT be done after the holidays and all the rich foods... heh) and I talked with my oncologist about the GLP-1 drugs and NET tumors. He had also heard of patients who had gone both ways after adding the drug - some patients reported tumor shrinkage and some reported tumor growth.

After ramping up to the full dosage of Rybelsus over 3 months, I had significant motility issues. A small bowel movement every 4 days even after taking a laxative and loading up on fiber and fluids with no urge to defecate unless a stimulant was involved did not make me happy.

I have been off the drug cold turkey for 2 weeks now and I am still not sure my stomach is adequately emptying and again no urge to defecate after 6 days... stomach paralysis is a risk of the Ozempic class of drugs and I may not return to normal. Its kind of like living with a blockage.

Last week I have had my first dotatate PET scan in 2.5 years (I have had CT scans with comparisons measured every 3 or 6 months after that first PET scan) and yes, my primary tumor went from unchanged all that time to showing moderate growth and my other metastestes had greater uptake of the chemical to light things up than prior. Can I blame the Rybelsus? Unknown!