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I'm back: increasing CA19-9 was accurate indicator of recurrence.
I had posted back in mid-November that my CA19-9 levels had been increasing and I was experiencing back pains at night, but there was no detectable circulating tumor DNA (ctDNA). To re-cap, I was diagnosed with borderline pancreatic cancer in July 2022 and had 12 rounds of FOLFIRINOX followed by a Whipple surgery at the end of January 2023. Due to the increasing CA19-9 and back pains, my oncologist ordered a PET scan at the end of December which revealed "areas of concern" in the surgical bed and in several mediastinal lymph nodes. My primary oncologist recommended either (1) restart chemotherapy or (2) wait and see. I got a second opinion from a second oncologist and decided at the time that I would wait in see. The ctDNA was still undetectable and evidence of recurrence was not definitive. It was also suggested that a more informed decision on treatment options could be made after recurrence was detected and we knew where the recurrence was located (local vs metastatic among other things). I was also wishfully thinking that maybe the increased CA19-9 and back pains and stomach aches I was experiencing could be due to pancreatitis, an ulcer or anything besides recurrence. That was wishful thinking. A CT scan on January 31 confirmed local recurrence at the site of surgery. I am now scheduled to restart chemotherapy next Tuesday. The decision for chemotherapy as opposed to radiation was based on concerns for possible metastasis to distal sites. I will be receiving Gemcitabine, Cisplatin and Durvalumab (an immune checkpoint inhibitor). This regimen has been shown to have some efficacy in treating biliary tract cancers, which is what my cancer was re-diagnosed as following pathological analysis of my resected tumor.
In retrospect, would I have done things differently? What I know now is that the increase in CA19-9, which started back in July (it first went from 7 to 28 to 72 to 120 and is now at 157 six months later), was in fact due to recurrence. I also now know that my back pains and stomach aches were probably due to the recurring cancer pressing on nerves, but also possibly due to stress and anxiety that I had been experiencing during the time of uncertainty. I did meet with a cancer therapist to address some of that, which was very helpful. I also now know the ctDNA test was not as sensitive as CA19-9, despite my and my care-giver's expectations. All together, I think I actually have taken the right course. I had six months with some discomfort, but mostly lived my life pretty fully. Restarting chemotherapy is going to be a drag, and there is no guarantee that it is going to be effective or make me feel any better. I will probably feel worse. Are outcomes going to be any different had I started treatments six months ago? We will never know. I can only hope for the best! Thanks for listening. Maybe what I describe will be of some use to others who may be going through the same thing.
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Thank you very helpful. Just what I was looking for. If I may ask : are you on chemo and if so continuous or have you stopped and started? My surgeon at MSK in NYC tells me if the Pet scan does not show a tumor don't bother with chemo. Any comment.
CA19-9 can be a very good indicator of cancer activity, but it doesn’t work the same for all mutations. Most with BRCA gene, CA19-9 is not a good indicator. I had KRAS12D and TP53 and ATM mutation (unknown significance base substitution) and it’s an excellent indicator and allows drs to know when small tumors or lesions, in my case, are coming back so we find things early and can treat them when small. At the end of March my CA19-9 was 224 when just 2 weeks before it had been 12 and it was that number since October 2024 following my MRIdean treatment. Now we are in the 300’s; it grows very quickly for me. Find out what your mutations are. For me, Signaterra lags behind any CA19-9 results. Hope this helps.
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2 ReactionsThanks for your reply. The onco's all seem to want you to go with chemo and stay on it. My surgeon who is at MSK in NYC says if you don't have a tumor no need to get chemo. If you find a tumor we will go to radiotherapy and then go from there. I have been off chemo for 5-6 month and now feel better prepared if I need radiation/ chemo. For me chemo is so hard on the body I'm not sure I could take a steady diet. Thanks again. By the way have you had any indication of the value of the Signatera blood test and the CA19-9 ?
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!
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.
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2 ReactionsI’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!
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2 ReactionsMy 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.
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2 ReactionsPET 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.
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3 ReactionsMy 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 ?
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1 ReactionThank you