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

Thanks 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 ?

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.

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.

Sounds like my story. I find it very frustration as well. What type and how many a times a month do you get chemo. My surgeon at MSK in NYC said no tumor no chemo. Follow up every 3 months with a Pet Scan but I worry about the CA19-9 going up. Thanks for the info.

I have been doing Gemcitabine and Abraxane since the beginning. I am only doing twice a month now, what my oncologist calls day 1 and day 15. My local oncologist lives by the CA 19-9. Since my scans have been clear, my oncologist at UCSF, where I had my surgery suggested forget the CA19-9 and just go with the scans, same as your surgeon. My problem is that I don’t want it to come back, so I tend to back and forth with the chemo, as my CA 19-9 numbers rise. When I was first diagnosed my CA19-9 was 9700. After three months of chemo it dropped to 150 and then had the whipple surgery.

@mnewland99 The thing is the Gem-Abraxane is controlling the spread elsewhere. These 2 spots - one on the surgical bed and one at the resected end of the pancreas - were always there but not 'lit up' in PET scans; they were just shadows. So the Gem-Abraxane appears not to be controlling these 2 spots. Onco says once these 2 spots have been dealt with, its back to Gem-Abraxane. Hard to figure out what is happening and what to think. Seeing surgeon tomorrow to see what he thinks - he was concerned about these 2 spots 3 months ago when scan and MRI were all clear but CA19-9 was rising. One hopes he can go in there and scrape them off!

We have to trust our surgeons and oncologists. This forum is good to hear what others say. But as many here recommend, be your own advocate. If you are concerned, do something about it. If your markers can go down and is now on an upward trend, insist on some tests. Some people have markers that are in the hundreds without cancer - those people may not need to worry. My husband's markers were within normal at one point and then climbed without the scans picking up anything. Recent developments show that his markers was telling us something. Our surgeon was concerned 2 months ago but our onco was not - we did nothing then but now we have to deal with the rising markers.

@mrgolfer326 Forgot to say my husband never had a Signatera blood test - onco's opinion was if CA19-9 is high, no point doing the Signatera.

Didn’t get my last session of chemo due to the fact my dr had me scheduled to start Naliri which I read online can cause exacerbation of interstitial lung disease (ILD). Somehow I developed ILD back in 2019 or before; it leaves a scarring on your lungs and basically makes it more difficult to breathe, but I already suffer from asthma anyways so I had to leave my chemo session because I just didn’t feel right getting Naliri without getting a 2nd opinion first. I asked if I could just get gemzar that day but was denied because my dr says it doesnt work anymore (it does keep my cancer from going crazy high rapidly, but that doc refused to acknowledge that) I’ve only had that oncologist since January of this year and they are at the city of Hope; a facility with a decent reputation. I’m glad I changed oncologists as my new old oncologist who I originally started out with was aware that Naliri may cause ILD to get worse. I may have to go back on gem abraxane which I truly hate the idea of. I do start SBRT radiation on my small liver lesion this week. If you’re brain is sending you a red flag about a drs opinion (no matter if they are associated with a facility with a stellar reputation) you need to get a 2nd opinion, in my opinion, to relieve any regrets you might have later on. It’s a patient’s prerogative to get a 2nd opinion.

Thanks for your reply. Very helpful to me. Just so I understand you had the whipple surgery like me and now do chemo twice a month? How is that working out? How hard is the chemo on your body? After about eight session I'm down for the count. I've been off chemo for 5-6 months and feel great /good for me and my wife but like you my CA19-9 is raising. I have some test early this month and if need be will go back on chemo. Like you thinking of only doing twice a month.