rising CA19-9 numbers but scans ok

I have an almost identical situation. My CA 19 nine markers started going up gradually in early 2024. We started the discussions about chemo at that time. However, the medical profession and doctors always want to confirm. CA 19 nine markers with physical scans to confirm the existence of a tumor and location. I was scanned every three months with an CT scan, and as expected late last year, it confirmed that the pancreatic cancer had returned to the same spot. I’ve been on chemo now for two months and after a month, the CA 19 nine marker went from 1500 to just under 500. So you can see where I could’ve started chemo earlier in 24 if we had pushed it. Doctors are reluctant to do this without a physical scan to confirm the presence of pancreatic cancer. The plan now is for another month of chemo and then Photon radiation treatment followed by oral chemo. This recommended solution is specific to my case where they will go in with the Photon treatment through my back to avoid hitting other organs with the radiation. I had a Whipple procedure in 2018 and was good for five years. When it returned in 2023 the CA 19 nine markers started rising, followed by CT scan that eventually confirmed the tumor. At that time, the radiologist recommended stereotactic radiation, which is more focused than traditional radiation which can cover a wider area and hit the organs in the area. This worked for almost a year and my CA 19 nine markers went down below 34. So you can see the CA 19 nine markers for a perfect indicator of the return of the cancer, but the doctors are hesitant to go to the chemo early on until they can get the confirmation from a scan. I’m a believer of the accurate diagnosis of CA 19 nine marker for people with pancreatic cancer. God bless you. And I pray for your husband’s full recovery. 🙏🏼💜🌈

Thank you scooter369. Dan is currently on gem/abrax... just finished his fifth of series of three/month. He was on folfironox before that until CA19-9 numbers started climbing, showing resistance to the drugs. Problem is, if there now is resistance to his current regimen, then I'm not sure what the next option is. I guess talk to them about trials. I'll look into it myself once I hear the doctors' take on these recent scans.
I have been pushing for these CA19-9 tests. One doctor said once/month is plenty and I pushed for 2/month as I really do think you can see the pattern faster. 325 has been the lowest number he's had... started at over 39000. Sure would be wonderful to see it below 35! But now we are up over 1200 again.

I think sometimes there is caution by oncologists as CA19-9 can sometimes increase due to inflammation not cancer. I recently had sepsis and it went up considerably but then went down after I recovered.

thank you plum1. Do you mind if I ask how they determined it was sepsis?

They can’t prove it but it’s known that certain non-cancer things like inflammation can affect it and the fact that it went high when I had it but came down with time suggests it.

I took a red light ride to the hospital when I woke up one morning and could not set up. My blood pressure was 70-40 and a major symptom of sepsis shock. CT at the hospital showed an inflamed Liver, Spleen, and large bowel with a diagnosis of colitis and was positive for bacteria in my blood. I had some days with chills and very bad pain that evolved to sweating buckets. I am on palliative care and none of the medical staff could figure it out. They just wanted to up my pain meds and that did not help. After the hospital stay and IV and oral meds for the infection my CA19-9 numbers have started back down. Neither CT scan showed any evidence of cancer. But of course that is not 100% either.

Best wishes to all dealing with cancer.

MORE ON CLEAR SCANS, INCREASING CA-19...I just got an unconfirmed diagnosis of peritoneal carcinomatosis after 2 CT scans and a PET scan (all clear) based I guess on my acute abdominal pain/discomfort (varies). What a shock. My Whipple was almost 2 years ago, but no treatment except one radiation for a small tumor on my ureter. I'm now looking at a shorter life span; so far no clear treatment but one is coming after a Guardant test. At 85, I have refused chemo since 2 infusions of the fluorinax, etc. and the Whipple. Pardon my spelling. Has anyone had this diagnosis? I've been posting comments but this time I need help. Thank you, and Courage, Carrie

I am also on Gemzar/Abraxane. At the three month cycle. Now the plan is another month and then proton radiation. Praying for your recovery in God bless you! 🙏🏼💜🌈

I can't help you out with your diagnosis, but I did reply to your other thread. All my best wishes to you.

Regarding the Medicare item, medical personnel, including receptionists and schedulers, are not supposed to comment on coverage. I have had this happen only to find out my insurance company covered the procedures that the doctor and nurse said they do not cover. This matter drives the billing people and business managers to distraction. They get apoplectic when medical personnel get involved in billing and coverage. You should always talk to billing about these matters.