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Massachusetts. They stopped the surgery because there was a spot on his liver

In my case, the surgeon did an exploratory “look” before scheduling surgery. In fact, that took place months before he felt I was surgically ready with the most curative outcome.

Hello,
My 73yo dad was diagnosed last month with a 2.9 lesion on the head. His CA19-9 was 8000. The scans showed no spread. He is a candidate for whipple but they will start with folfirnox first and after surgery. The CA19-9 is very alarming. He is supposed to start chemo friday 12/13 but his CA19-9 just came back 10000. Pet scan and ct scans still show no spread. Why is his level so high ?

CA19-9 of a single reading is not of much value at this point. It is only a single datapoint in time and is too early to indicate a trend when chemo is just starting. It is a well known, documented fact with mode of action elucidated by researches as to the cause of the observation in its rise at the start of chemo.

This scientific paper will explain about tumor burden, CA19-9 and the rate-limiting factor of the liver enzyme that has to process a growing backlog of CA19-9 being released as chemo begins causing cell death through DNA damage resulting in the process of apoptosis.

Increase in CA19-9 in early chemotherapy treatment cycles
https://www.sciencedirect.com/science/article/pii/S2468294221000952
(This was the article I was looking for topost to your DM inquiry on Reddit).

Good Morning ! My name is Sue. My husband who is 70 yrs old was diagnosed in July 2024 after going through a
whipple. He had so much inflammation throughout his body that they could not see a tumor even though they did all the relevant tests. He had lost 40 lbs and had no appetite. Our Primary Doctor sent us to an Oncologist who told us she did not think it was Cancer. A Surgeon was recommended to us and he suggested that we do the Whipple to see what was actually going on. He found a tumor that involved both the body and tail of the pancreas so he removed the body and tail and also removed the Spleen. Cancer was also found in 16 of the 20 lymph nodes that they removed.
They sent him home after 5 days without a drain. Unfortunately, he had a pancreatic leak and developed an abscess so they inserted a drain. Since then, his lung has collapsed, he developed pneumonia and also had
2 Staph infections. We are 5 Months into this and he still has the Drain in him.
He is definetely stage III and the Oncologist cannot do anything until he gets the Drain out.
I am against doing Chemo at this point and the Oncologist agrees that it would probably kill him. He has lost
an additional 40 lbs and is very weak.
I am very interested to see if anyone has experience with immunotherapy.

hello @kevun123
That’s a very interesting question. MRI might show a liver lesion (not a tumor or nodular shape) where the PET and CT might not show lesions that are small. At least this was the case for me.

Thank you for posting article. If I understand reading article correctly, there was no distinction between stage 3 and 4 as far as response or differentiation when setting up sample size?

Hello @suelannon
My first question after reading your post would be is your husband going to a pancreatic center of excellence? If you list your city and state, other members will be able to recommend medical centers and sometimes even drs you might want to get a 2nd opinion from. If husband is too weak to attend in person, a video call might be a possibility.
I had distal with spleen removed in 2022 and had a drain which I’m going to go out on a limb and say that a drain from abdominal area seems pretty standard procedure after surgery. I had a pancreatic duct leak after surgery which led to a GI bleed since those are acidic (digestive) juices. I was bleeding quite a bit into my drainage bag so I got a stent put in after not eating for 3-4 weeks (I did have a TPN nutrient bag). Not giving your body any foods to digest helps to stop the leak until a stent can be put in. After 6 weeks I had an ultrasound ERCP done to assess leaking and I was all good, so the stent was removed. If the leaking hadn’t stopped then a metal stent would have replaced that initial plastic stent. I also got pneumonia after my surgery since I wasn’t able to walk around much after my surgery; not fun. I also got pancreatitis and then Covid (all this with 1.5 months after my surgery). I did lose 50 pounds from time I got started getting my symptoms since I had extreme nausea and some of that weight was lost after surgery and while on the no food diet before stent insertion. I gained almost all weight back now! Did any drs run a CA19-9 blood test otherwise known as a “tumor marker?

Thanks for your response. We started out at University of Penn in Phila. After we were told that they didn't think this was Cancer, we went to a Surgeon at Jefferson in Phila. so I feel like we are dealing with very reputable hospitals. Pre-Surgery his Ca19-9 results were as follows :
April 2024 639
June 2024 1720
Early July 2024 1886 ( All of this and we were still told they did not think it was Cancer )

July 2024 1887 ( This is when we went to Jefferson , Pre-surgery )
July 19,2024 403 ( Post Surgery - Unfortunately, they did not get clean Margins but did not know this until after the Pathology Report came back )

September 2024 632
October 2024 859

He has had no treatment at all due to the Drain.

Immunotherapy is not an approved treatment at this point for us. Clinical trials have shown limited success. Some of them involve pairing immunotherapy with chemo. Many things are in trial.

If he has KRAS mutations, there are trials that are oral meds that only target these . Targeted therapies do not attempt to kill all of the cells so the side effects are much much more tolerable than standard of care chemo.

By now he should have had tumor and genetic testing to provide groundwork for research into clinical trials.

This could be an option until he is stronger.