I'm back: increasing CA19-9 was accurate indicator of recurrence.

If you don't mind my asking where are you doing this trial. My husband was going to be in the 6236 but did not qualify at mayo mn. He has a 12v mutation.

My husband had a Distal Pancreatomy in July 2024. Many, many complications afterwards but the Ca19-9 results kept going up before he had the surgery. They could not find the tumor because there was so much inflammation. First Oncologist told us she did not think that he had cancer. We finally went for a second opinion and although he was seeing all of the same test results, he recommended the surgery which is when they found the tumor in the tail and body of the Pancreas. They also found cancer in 14 of the 20 Lymph Nodes that they removed.
He had so many complications after the surgery and was so sick that they have never wanted to do Chemo. He has had no treatment at all after the surgery. They do the Ca19-9 test as well as other blood work and CT Scans
every 3 months. They did find innumerable lung nodules and did do a lung biopsy about 4 months ago and found that the pancan was all through his lungs.
His Ca19-9 in November was 870, In February 2000 and in April 8700.
He keeps complaining about pain on his right side going into his back and it keeps him up at night. We went in yesterday and they ordered regular blood work, a CT scan and an x-ray of his hip.
They did not do a CA19-9 test. I was very anxious to see what that number was since it had quadrupled in April
but they told me that test is not reliable. They told us that everything looked good and that the Cancer was very stable. Thay also told us that his blood work looked great.
His Lipase level in November 2024 was 8. Yesterday it was 213. It had not been that high since the month before he had surgery. After surgery, it went way down.

If his Ca19-9 #'s hadn't been so high I don't think they ever would have done the surgery to look for a tumor.
We just kept hearing that they thought it was pancreatitis.

Now with the Ca19-9 being 8700 which is way higher than it was before the surgery and the Lipase being 213,
I find it hard to believe that the Cancer is stable. Has anyone else ever seen this ?

I’m going through the pre-testing required for a clinical trial at Mayo MN now. You may want to check into the trial that is testing the IMM-1-104 pill. You get the trial pill and standard of care chemo. The early results are looking promising. I have the G12R mutation. Good luck.

Thank you

My cancer was discovered Jan.17,2024 and had Whipple at MSk in NYC on2/29/24.Cancer was 2mm on the head of pancreas. Took six months to recover and started Chemo in Sept2024. I had eight rounds of Chemo until 12/11/24. Then had an MRI and Ct scan in early Jan2025
In April had a Pet scan with no sign of tumor. I also had a Signatera blood test April 15 which showed Positive of MtMml 0.12 . ( negative is Mtml 0.00 ) My CA 19-9 has gone up to 605 on May23th.
I 'm told now the only test that matters is the Pet scan which I will have every 8-12 weeks. I want to be proactive. My question is : which test is more reliable and have others experienced this situation. My Oncologist keeps talking about Chemo as if that's the only solution. My feeling is without a tumor do I need really chemo ?

PET scans certainly can find activity. But an MRI with and without contrast seems to be the tool to look at liver, which is where this thing tends to metastasize first. I understand the desire to get you in chemo to hopefully slow or stamp out whatever is trying to grow.

My husband has been on chemo since Feb 2024. The onco says it is because the cancer cells may be lying dormant and the chemo is to control and prevent them from becoming active. PET scans since May 2024 had not picked up any tumour or cancer activity but onco said to continue with chemo.
However, at a recent PET scan a week ago, we discovered activity at the surgical bed. A PET scan and an MRI just 3 months before did not pick up this activity. So the guess is there is resistance to chemo now. We are looking at radiotherapy for these 2 small spots of activity. After that, it is back to chemo - spaced out to twice a month instead of 3 times a month.

I’m sorry to hear about your husband’s PET scan activity. I’m in the same position; new, small activity. I’ve just been on gemzar the last 5 months and apparently by itself, it’s not effective enough to stop cancer. Naliri should be my next move, but it can exacerbate existing conditions of interstitial lung disease (ILD) of which I do have and use an inhaler 2x per day. I might need to add abraxane to the gemzar again with its wonderful gifts of neuropathy and hair loss. I almost lost my ability to walk and drive due to abraxane so I’m not excited about it. I also plan to get MRI radiation again on my new liver lesion, but my oncologist says I need a systemic treatment (chemo), as well. If you say your husband’s chemo is wearing down, which new chemo will he try? Hoping the best for both from across the continent!

Thanks for your reply. It helped. My surgeon who is at MSK in NYC told me unless you have a tumor no need to get chemo . If we find a tumor then go with radiotherapy then we will discus chemo which is so hard on the body. What is your experience with Signatera blood test and CA-19-9 as an indicator of where your cancer is going. My onco tells me the same thing about chemo however the 5-6 month break was good for me and my wife. I think the surgeon gave me the best advice and if I need chemo I'm stronger and better prepared. Thanks again.

I had whipple surgery in January 2024 with clear margins. My surgeon had me do 3 more months of chemo after my surgery . I have had clear scans every three months since, but every time I get off the chemo my CA 19 numbers start to rise. Very frustrating!