Metastatic Pancreatic Cancer: What to Ask

This page is for people with metastatic (stage IV) pancreatic cancer and the people close to them. It explains the terms you may hear and the questions worth asking your care team, based on National Cancer Institute (NCI) information.

NCI's summary groups treatment by how far the cancer has spread: resectable or borderline resectable, locally advanced, and metastatic or recurrent.

Metastatic means the cancer has reached other organs. Locally advanced means surgery cannot remove it, but it has not spread that way.

The words sound similar and the plans differ. Ask which group you are in, out loud.

NCI describes two standard options for advanced pancreatic cancer, both tested in large trials. FDA has since approved a third for metastatic disease.

One is FOLFIRINOX, which combines oxaliplatin, leucovorin, irinotecan and fluorouracil. NCI calls it a standard treatment option for advanced disease.

The other is gemcitabine with nab-paclitaxel. The trial NCI cites enrolled people with metastatic disease who were still reasonably active. NCI calls it a standard option too.

The two were not tested against each other. Both trials enrolled people who were fairly active, so ask how your own fitness and health shape the choice.

The third is NALIRIFOX: a liposomal form of irinotecan with oxaliplatin, fluorouracil and leucovorin. On February 13, 2024, FDA approved it as a first treatment for metastatic pancreatic cancer. In the NAPOLI 3 trial of 770 people, median overall survival was 11.1 months with NALIRIFOX and 9.2 months with gemcitabine and nab-paclitaxel.

This is not a complete list. Ask your team which approved options fit you, and why.

NCI lists BRCA1, BRCA2, PALB2 and ATM among the genetic conditions linked to pancreatic cancer risk.

A BRCA result can also change treatment. NCI says olaparib maintenance can be considered for people with a germline BRCA1 or BRCA2 variant whose metastatic cancer responded to platinum chemotherapy for more than four months. In the trial, the cancer took longer to grow with olaparib (a median of 7.4 months versus 3.8), but overall survival was about the same (18.9 versus 18.1 months).

There is a second, separate test worth asking about. NCI notes that an estimated 1% to 2% of people carry a DPYD variant. Some of these variants can make fluorouracil and capecitabine cause severe, life-threatening side effects.

If the bile duct is blocked, yellow skin and itching follow. NCI describes stents to reopen the duct, and bypass surgery when the stomach outlet is blocked.

Ask whether a stent needs placing before chemotherapy starts. Ask what a blocked or infected stent feels like.

• Am I metastatic, or locally advanced and unresectable?
• Which chemotherapy do you recommend, and what decided it?
• Should I have germline testing for BRCA1, BRCA2, PALB2 and ATM now?
• Should I be tested for a DPYD variant before fluorouracil or capecitabine?
• What is my CA 19-9, and how will you use it alongside scans?
• Do I need a stent before treatment starts?
• Should I be taking enzyme capsules with meals?

Two supportive treatments are on NCI's own list, and both get missed.

Surgery or disease in the pancreas can stop it making digestive enzymes. NCI says pancreatic enzyme replacement can help with the poor absorption that leads to malnutrition.

For pain, NCI says nerve blocks, such as a celiac axis block, can give highly effective and long-lasting pain control for some people.

• Call 911 or go to an emergency department if you vomit blood, pass black tarry stools, or become confused or hard to rouse. Also go straight in for a temperature of 100.4°F (38°C) or higher together with shaking chills, yellow skin and pain in the upper right of the belly. That pattern suggests an infected bile duct, which needs urgent drainage and antibiotics. Do not drive yourself.
• Call your care team right away, day or night, if you have a temperature of 100.4°F (38°C) or higher while on chemotherapy. Fever during chemotherapy is a medical emergency in CDC's guidance. Go to an emergency department if you cannot reach them.
• Call your care team right away if you cannot keep fluids down, or you are vomiting after every meal. A blocked stomach outlet is on NCI's list here, and a stent or bypass can help. Call right away too for severe belly or back pain that your usual medicine is not touching.
• Call your care team the same day if your skin or eyes yellow, itching starts, your urine darkens or your stools turn pale. A stent can become blocked, and MedlinePlus lists these among the signs of a bile duct infection.
• Call your care team within a day or two if you have greasy, floating stools and weight loss. Ask whether your enzyme capsules need adjusting.

Read on: Palliative Care, Cancer Staging, Biomarker Testing, and Clinical Trial vs Standard Treatment.

• NCI — Pancreatic Cancer Treatment (PDQ) Patient Version
• NCI — Pancreatic Cancer Treatment (PDQ) Health Professional Version
• NCI — Drugs Approved for Pancreatic Cancer
• MedlinePlus — Cholangitis
• CDC — Fever during chemotherapy
• MedlinePlus — Gastrointestinal bleeding
• NCI — Bleeding and Bruising (Thrombocytopenia) During Cancer Treatment
• FDA — FDA approves irinotecan liposome for first-line treatment of metastatic pancreatic adenocarcinoma