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Rare Cancers

Neuroendocrine Tumors Clinical Trials and Treatments

Also called Neuroendocrine Tumor, NETs, Carcinoid Tumor, Carcinoid Syndrome, Gastroenteropancreatic Neuroendocrine Tumors, GEP-NET, GEP-NETs, Pancreatic Neuroendocrine Tumor, pNET

Neuroendocrine cells act partly like nerve cells and partly like hormone-making cells, and they are scattered through the gut, pancreas and lungs. A tumor that grows from them is a neuroendocrine tumor.

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About Neuroendocrine Tumors

Neuroendocrine cells act partly like nerve cells and partly like hormone-making cells, and they are scattered through the gut, pancreas and lungs. A tumor that grows from them is a neuroendocrine tumor. Tumors in the digestive tract were long called carcinoid tumors. Many NETs grow slowly, and the number diagnosed in the US has risen several-fold since the 1970s, partly because scans and scopes find more of them by chance.

Some NETs are functional, meaning they make extra hormones that cause symptoms. When hormones from a NET reach the bloodstream, usually after the tumor has spread to the liver, they can cause carcinoid syndrome: flushing, diarrhea and wheezing. Non-functional NETs cause symptoms only as they grow or spread.

Treatment depends on where the tumor started, its grade and whether scans show somatostatin receptors on it. Surgery can cure tumors found early. Lanreotide (Somatuline Depot) and octreotide (Sandostatin) injections ease hormone symptoms, and lanreotide also slows the growth of gut and pancreatic NETs. Lutathera, a radioactive drug that seeks out somatostatin receptors, is approved from age 12, and 2 more versions of the same lutetium-177 dotatate were approved in September 2026, Bexlutry and Bravnetsa. Daily pills include everolimus (Afinitor), sunitinib (Sutent) for pancreatic NETs and cabozantinib (Cabometyx), approved in March 2025. Xermelo (telotristat ethyl) treats carcinoid syndrome diarrhea that a somatostatin injection does not control.

Why is Neuroendocrine Tumors on Trial Friend?Neuroendocrine neoplasms as a group, which include NETs, affect about 244,000 people in the US, above the 200,000 line that defines a rare disease there. They are on Trial Friend because each type, such as pancreatic, small intestine or lung NETs, is rare on its own, and patients face the same struggle to find experienced specialists, the right scans and clinical trials.

Common Symptoms of Neuroendocrine Tumors

Recognizing the signs of Neuroendocrine Tumors early can lead to faster diagnosis and better outcomes. Symptoms may vary in severity from person to person. If you or a loved one are experiencing any of the following, consider speaking with a specialist.

  • Flushing, a sudden redness and warmth of the face and neck (carcinoid syndrome)
  • Diarrhea that keeps coming back
  • Wheezing or trouble breathing, and a fast heartbeat
  • Belly pain, bloating or weight loss without a known reason
  • Blood in the stool or rectal pain, with tumors in the rectum
  • No symptoms at all; many NETs are found by chance on a scan or scope done for something else

Who Neuroendocrine Tumors Affects

NETs are usually found in adults. In a 2025 analysis of US cancer registry data on neuroendocrine neoplasms, the average age at diagnosis was about 61, and 52% of people diagnosed were women. Most NETs are not inherited: about 5% of NETs of the gut, pancreas and lungs come from an inherited syndrome, rising to about 10% of pancreatic NETs, most often multiple endocrine neoplasia type 1 (MEN1), von Hippel-Lindau disease, neurofibromatosis type 1 or tuberous sclerosis.

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FDA-Approved Treatments for Neuroendocrine Tumors

There are currently 3 FDA-approved medications for Neuroendocrine Tumors. These therapies represent the current standard of care and may be used alongside or compared against investigational treatments in active clinical trials.

lutetium lu 177 dotatate
Novartis (Advanced Accelerator Applications)
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telotristat ethyl
TerSera Therapeutics
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Source: openFDA drug labeling data. This list may not include all treatments. Always consult your doctor.

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Side Effect Explorer

Real-world side effect reports from the FDA Adverse Event Reporting System (FAERS). Includes both FDA-approved drugs and investigational therapies from active clinical trials. Click any drug to see what patients reported.

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Genetic Testing

Genetic testing can confirm a diagnosis, guide treatment decisions, and identify family members who may be at risk.

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Trusted Neuroendocrine Tumors Resources

Reputable organizations and medical references for learning more about Neuroendocrine Tumors, including disease registries, foundation resources, and clinical guidelines.

Active Clinical Trials for Neuroendocrine Tumors

Use this Neuroendocrine Tumors clinical trial finder to see the 14 studies recruiting patients and 1 opening soon in the United States and worldwide, with eligibility criteria in plain English. Of these, 13 test a treatment and 2 are observational studies or registries; each card says which. These studies play a critical role in advancing care for rare cancers conditions and may offer access to treatments not yet widely available. Each trial below is sourced directly from ClinicalTrials.gov, with eligibility criteria translated into plain English to help patients and caregivers evaluate whether a study may be a fit.

New to trials? What Placebos and Randomization Actually Mean for You (In Plain English) · 4 min readWorried about cost? The Hidden Costs of Joining a Clinical Trial (And How to Get Help Paying for Them) · 4 min read
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Note: Trial recruitment statuses on ClinicalTrials.gov may not immediately reflect recent FDA decisions, sponsor announcements, or enrollment changes. Always confirm a trial's current status directly with the study coordinator before making plans.

161 active trials worldwide
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RECRUITINGTreatment trialPhase 2Recently updatedNCT06406465

A UGT1A1 Genotype-Directed Study of Belinostat Pharmacokinetics and Toxicity

Intervention: Belinostat, Cisplatin, Etoposide

Sponsor: National Cancer Institute (NCI)

Background:

Ages 18 Years to 120 Years1 location
Expected to start Oct 2026Updated 4 days agoEst. Jul 2027 (~9 months)
RECRUITINGTreatment trialPhase 2Recently updatedNCT05773274

Comparing Retreatment of 177Lu-DOTATATE PRRT Versus the Usual Treatment in Patients With Metastatic Unresectable Gastroenteropancreatic Neuroendocrine Tumors, NET RETREAT Trial

Intervention: Biospecimen Collection, Cabozantinib, Computed Tomography, Everolimus, Lutetium Lu 177 Dotatate, Magnetic Resonance Imaging, Quality-of-Life Assessment, Questionnaire Administration, Sunitinib

Sponsor: National Cancer Institute (NCI)

This phase II trial compares the effect of retreatment with 177Lu-DOTATATE peptide receptor radionuclide therapy (PRRT) to the usual approach of treatment with everolimus, sunitinib, or cabozantinib in patients who have previously received 177Lu-DOTATATE for gastroenteropancreati...

Ages 18 Years+41 locations
Started Jan 2024Updated 5 days agoEst. Apr 2029 (~2y 6m)
RECRUITINGTreatment trialPhase 2Recently updatedNCT04339036

CapTemY90 for Grade 2/3 NET Liver Metastases

Intervention: Capecitabine Oral Product, Temozolomide Oral Product, transarterial radioembolization

Sponsor: Abramson Cancer Center at Penn Medicine

This is a Phase 2 evaluation of hepatic-progression free survival among patients with Grade 2 liver-dominant NET metastases undergoing combination therapy with CapTem and Y90 radioembolization.The hypothesis is to confirm safety and to assess if disease control is improved relati...

Ages 18 Years+5 locations
Started Oct 2021Updated 5 days agoEst. Jul 2028 (~1y 8m)
RECRUITINGTreatment trialPhase 2Recently updatedNCT01174121

Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer

Intervention: Pembrolizumab (Keytruda), Fludarabine, Cyclophosphamide, Aldesleukin, Young TIL

Sponsor: National Cancer Institute (NCI)

Background:

Ages 18 Years to 72 Years1 location
Started Aug 2010Updated 5 days agoEst. Dec 2028 (~2y 2m)
NOT YET RECRUITINGTreatment trialPhase 1Recently updatedNCT07661420

211At-MABG in Adults With Advanced Neuroendocrine Cancers

Intervention: 1 MBq/k of 211At-MABG Fractionated, 2 MBq/k1 of 211At-MABG Fractionated, 4 MBq/k of 211At-MABG Fractionated

Sponsor: University of Pennsylvania

Phase I dose escalation study of 211At-MABG in adults with advanced pheochromocytoma / paraganglioma (PPGL) or other NET-overexpressing cancers (as evidenced by positive MIBG imaging) who are refractory to, lacking, or ineligible for approved treatments. Phase 1 dose-escalation w...

Ages 18 Years+1 location
Expected to start Dec 2026Updated 6 days agoEst. Aug 2029 (~2y 9m)
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Active trial locations68 cities in the US
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Trial Pipeline

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Data from ClinicalTrials.gov, U.S. National Library of Medicine.
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Patient Communities

Connect with other Neuroendocrine Tumors patients, caregivers, and advocacy groups across Facebook groups, Reddit communities, and YouTube channels. These patient communities offer peer support, shared experiences, caregiver resources, and real-time discussion about Neuroendocrine Tumors treatments, clinical trial participation, and day-to-day disease management.

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Related Conditions

Conditions that share genes, symptoms or treatments with Neuroendocrine Tumors, followed by others in the rare cancers category. Patients with Neuroendocrine Tumors may find relevant research, shared treatment pathways, or overlapping clinical trials among these related conditions.

Frequently Asked Questions About Neuroendocrine Tumors