CA 19-9 and pancreatic cancer: What do the numbers mean?

What chemo was he on?

He was on all of this. Not at the same time.
Gemcitabine (Gemzar)
5-fluorouracil (5-FU)
Irinotecan (Camptosar) or Liposomal Irinotecan (Onivyde)
Oxaliplatin (Eloxatin)
Docetaxel (Taxotere), and Albumin-bound paclitaxel (Abraxane)

He was on all of this. Not at the same time. Over the course of 3.5 years.
Gemcitabine (Gemzar)
5-fluorouracil (5-FU) or Capecitabine (Xeloda) (an oral 5FU drug)
Irinotecan (Camptosar) or Liposomal Irinotecan (Onivyde)
Platinum agents : Cisplatin and Oxaliplatin (Eloxatin)
Taxanes: Paclitaxel (Taxol), Docetaxel (Taxotere), and Albumin-bound paclitaxel (Abraxane)

Which combo helped the most?

So far we have tried FOLFOX - 5FU, leucovorin and oxaliplatine. Tough for side effects. It was recently changed for FOLFIRI- 5 FU , Leucovorin and Itinotecan.

He also had radiation everyday for 6 weeks and had a chemo pump that entire time. I really can’t say which regimen worked the best. They both had pros and cons. Both “worked” at the time I guess. It was a very hard battle for 3.5 years.

In my wife's case, the combinations which included platinum (oxalyplaten with folfirinox: cisplaten with gemcitibine/abraxane) were the most effective, but also the most debilitating side effects.

Opinion...on the numbers. That is very well put for this question. From my reading over the last several months it is a "marker", not really used to direct actionable treatment decisions. What I mean by that is the number is from our experience so far the Oncologist (team) use it to see if the chemo is impacting the cancer. If it is remarkable they order more definitive test to validate "impressions". For my wife it was ...2291 start and after three rounds of the 5FU, Oxipltn and several enhancers her CA 19-9 is 80. Just had the blood work today to see what the last rounds results are. As for now she is stopping chemo. Her digestive system is destroyed. she cannot eat or hold ANY food down. Her bowls are releasing water seven or eight times a day. She is getting hydration and has now been put on intravenous nutrition (TPN). As of now I do not believe she will be able to have any more chemo, it is just too much for her to take. I pressed the Oncology team for weeks about her side effects being EXTREME. They simply gave her another nausea med and a different diarrhea med and sent her to tough it out. Finally today, I got their attention and said she will not be here monday for her next infusion...she cannot take it. They ordered an x-ray and again sent us on our way. So sad to watch my beautiful wife being destroyed by this.

To touch on a couple of points you mention-
I suffered fro chronic diarrhea all through my chemo. Imodium was not effective for me so the care team prescribed Lomax, Lomatil or their generic form diphenoxylate atropine which were effective. I did not wait until symptoms manifested. I used the anti-diarrheal products proactively generally taking 36 hours in advance. That worked well for me. But a contributing cause of the diarrhea was not so much the chemo but that I was exhibiting all the classic signs of Exocrine Pancreas Insufficiency (EPI). I was never prescribed Pancreas Enzyme Replacement Therapy (PERT) after the Whipple and how I suffered and struggled with malabsorption p, malnutrition, dehydration. After doing some research and having reported my symptoms at every exam with them being noted but not addressed, I asked for an Rex for Creon. That turned things around and my QoL dramatically improved.

CA19-9 is not a perfect marker. It is used for PadAC tumors but is not present in PACC or PNET tumors and there is a small percentage of patients who due tone genetics are non-secretors. CA19-9 is a “relative” number. What I mean by that is what one person may consider high (e.g., 400) because it is over the upper normal limit of 37U/mL, could be considered low when compared to a patient of 818,000. In the early stages of treatment, CA19-9 measurements may show an increase giving the false impression the chemo regimen is not effective. It is well documented that when starting off with a high tumor burden, there is more surface area for the tumor to come in contact with and there is more CA19-9 available for release as those cells die. As the tumor burden decreases (shrinks) as the chemo works, there is less surface area and less CA19-9 that can be released with less cells.

The definitive measurement for chemo efficacy is doing a CT or MRI at 3 month intervals. A current scan is compared to the previous scan to determine percent shrinkage or if the disease is stable. It is possible to have elevated levels of CA19-9 yet the tumors shrinking from inflammatory effects of the chemo on CA19-9 and there are documented benign conditions where elevated CA19-9 occur. That is why oncologists use imaging as the definitive method to assess chemo effectiveness.

CAUSES OF CA19-9 ELEVATION IN NON-CANCEROUS CONDITIONS

Non-cancerous conditions that can cause high CA 19-9 levels include:
* Gallstones
* Biliary infection (cholangitis)
* Blockage of the bile duct (jaundice)
* Pancreatitis (swelling of the pancreas)
* Cystic fibrosis
* Liver disease

During radiation therapy, CA 19-9 levels might be raised as dying cancer cells release CA 19-9. For this reason, the test is not usually done while the patient receives radiation treatment.

@jqleck Your wife's situation has parallels to my wife. 3 years into treatment my wife started as a robust, healthy athletic woman who is now frail and largely bedridden. The problem? Getting useful medical advice in dealing with chemo caused destruction of the digestive system. We tried every protein supplement on the planet and none of them do a thing for the patient who can't digest and absorb the nutrients. We just recently discovered another approach and are 3 weeks in. The product, Enterade is an electrolyte and amino acid blend that is designed to heal the cilia cells in the GI tract so that food intake can be properly absorbed. We don't have any financial stake in the company, and it could turn out to be a waste of money but we're giving it a try. Nothing else prescribed by the doctors or suggested by the nutritionists has helped. Since starting the Enterade she's had some good days without diarrhea. It's not consistent but we didn't expect instant relief considering that she's had 3 years of destruction and is still getting irinotican every other week. (Irinotican also called I ran to the can). Keep in touch if you try Enterade and it helps. Good luck.