Does a change in CA19-9 indicate change in tumor?

Were you only tested for a germline (inherited mutation)? Some testing of a somatic (not necessarily inherited) mutation is done of tissue after endoscopy with biopsy, but depending on biopsy area it may difficult to get a good sample so the result may be a false negative. Surgery is the best way to get a tissue sample for biopsy and then test for mutations; but not everyone can get surgery. Speak with your drs about the above.
In regards to span of time time from 1 stage to the next will depend on the aggressiveness your cancer based on your mutations. Mine are ATM, KRAS12D, TP53, and 1 other. 92% of pancreatic cancer patients have KRAS mutation. If you have BRCA1/BRCA2, PALB1 and others coming about lately there is immunotherapy and chemotherapy to fight these almost permanently for some and some others for an extended period of time. I completed my chemo in June 2023 with CA19-9 of 6 and according to Hoag radiologists/oncologist. However, there was some soft tissue light up on CT scans (but no PET scan FDG take up) that had some growth at start of chemo but remained stable. I was ALWAYS wary of this site and discussed my concerns with drs but they wrote it off based on the scan results. I began to feel weak around in August or September and my underlying cardiac arrhythmia of tachycardia with PACS/PVCs started to act up again (it occurs when my body is under stress). My quartet follow-up should have been in September but I had forgot to schedule it so I didn’t get my ca19-9 and CT until October 30. My scan was clear other than that hepatic /celiac soft tissue area still lighting up but pretty much stable in growth. My CA19-9 was 23. So the increase was exponential (from 6 to 23 or 24). I got another ca19-9 and it went to 48 and then 72 within just a couple of weeks. The “dumb” nurse practitioner was very irritated with me (her voice almost screeching) telling me I was just panicking and could be just a bacterial infection though they never recommended I get a lab test for that. I saw it was time to go away from Hoag oncology and tried to get a 2nd opinion. I got several calls from their liaisons pleading with me to stay saying my oncologist was the best there. I got a MRI (after I had to ask them for one) in December and they found 2 small lesions in my liver. By 3rd week in December I got a endoscopy/biopsy and metastasis to liver was confirmed and after procedure dr said that hepatic artery area did look like cancer. He’s an expert in his field. By that time I didn’t care what my CA19-9 was since metastasis had been confirmed and I was now in stage 4. Just days before the last day to change my insurance I chose a PPO so that I could switch my oncology care to UCLA starting in January. I still got a chemo treatment from Hoag the second week in January at which time my CA19-9 was 3840. I got COVID and then was off chemo and in late January continued my chemo with UCLA. I got down to 21 and the following my chemo vacation of 3 weeks it shot up to 536 ( so obviously my mutations are very aggressive). After 4 chemo sessions now I’m back to 185, but had to get this weeks CA19-9 order following chemo from my primary since UCLA only does it once a month. At this point (even after receiving 4 different types of scans after my chemo vacation - some positive maybe but growths are too small or unclear based on morphology even though PET scan lit up femur but not new nodule in my lungs. On my own again - I searched for a pulmonologist that just does biopsy procedures (my oncologist was on board with my decision (nice!) and he’s pretty sure my 0.9 cm new nodule is from my respiratory issues and isn’t cancer though my ct (angiogram) to lungs will be repeated in 4 weeks now just to be sure. When I found out about recent spread I immediately sought out an expert radiologist oncologist who does view ray or MRIdean at City of Hope in Irvine. I get my mappi g done next week to see if I’m a candidate but he wants to do it on my liver and pancreatic bed. It’s all very challenging, but bottom line is get at least 1 or better 2 second opinions from other facilities in order to fight the good fight.

good advice as always and a remarkable path to get where you are today.

after 7/22/24 aborted Whipple we decided to try SMART radiation therapy with Dr. Lee at Irvine City of Hope using the MRIdian technology. We scheduled my wife's initial appointment for 9/6 and she had a PET on 9/3 which showed 5 liver lesions for the first time. This caused Dr. Lee to cancel the radiation therapy. Hopefully COH will be able to proceed with your therapy.

We subsequently got a 2nd opinion today from UCSD, which supported Kaiser's starting her on gemcitabine/abraxane (GA) last week. She'll have a PET in about 2 months to see the effects of the GA.

We also scheduled liver biopsy for next week which should show any mutations as the tests last October showed no mutations.

We will schedule an ERCP to determine if sharp CA19-9 rise, slight bilirubin rise, abdominal pain, and digestive issues are in any way related to bile duct stent blockage.

2nd opinions are useful. unfortunately Kaiser does not approve out-of-network services, which means we self-pay. I'd recommend anyone with Kaiser changing insurers at the earliest opportunity.

All of which is to say the CA19-9-tumor change relationship is a moot issue for us.

I believe it is USC's motto that is most applicable: "Fight On!"

I’m following you closely as I think the trial you are in is the one they are looking at for my husband. He is still on the gemabraxane but tumor marker has gone up from 22 to 111 in about 6 weeks. Scan shows no growth yet.

Yes @steveron that is the USC motto and I like it much better than the UCI motto which I think is just “Zot Zot” which is what we say to another alumni or current student (lol it’s the sound of our mascot - anteater). I 2nd your advice about Kaiser; I started out with them and they didn’t put my back pain and suddenly very sharp rise in blood sugar that couldn’t be controlled and my dads history of pancreatic cancer to give me a proper diagnosis early on. I turned 65 in July 2022 and was able to change my insurance. Is there any insurance you could obtain now (cancer insurance as some call it or through an alumni circumstance) now? I was willing to pay cash last year in December, but most facilities didn’t want to even to take that until January this year as I was switching to a PPO. They thought my expenses for cash would be too great and of course the holidays forced me to wait until January this year.
I’m also seeing Dr. Lee and hoping my mapping next week shows still just the 1 lesion. It’s good that your wife will be doing the GA which for me works well on lesions. I’m also praying her upcoming biopsy will offer the opportunity to obtain a sample to run her mutations again. It’s a tough battle, but there is hope at the end of the tunnel; even if for just a few more months to spend with our loved ones. I wish you both the very best on this journey, and it appears you are making sound judgments on her care.

My husband's numbers started at over 39000. 6 months of harsh treatments, then 3 months of maintenance chemo and numbers were down below 400. But then 3 tests in a row (done every other week with chemo) went up. We were very concerned, so got an immediate appointment for second opinion in Seattle at Fred Hutch. They got us in within days of us calling! And we'd gotten the ct scan moved up by a few weeks. And sure enough, there was some new growth seen on the scan. And now (as of yesterday) my husband started the harsh chemo again. Luckily for us, the second opinion and current oncologist are in agreement on this and we can continue to live at home for treatments closer by.
It was disappointing as my husband was feeling pretty good on the maintenance chemo. But, glad we knew not to wait to attack the cancer again. Our car now has an extra 1500 miles on it from this past week going to Seattle.
We're happy with our oncologist, but also feel you need to actively push to get tests/appointments if things seem to move slower than you want.

our son-in-law went to UCI and I have a UCI Dad shirt and hat somewhere. We live in San Diego and if you care to share, where are you?

Kaiser does not cover out-of-network services, so we pay cash for those. We found cancer insurance policies, but none would cover my wife because of the PDAC and she is over 70.

@markymarkfl recently posted about Histotripsy, which is FDA approved to use sound waves to treat liver lesions. Here are info links in case you didn't already have them:
https://histosonics.com/find-edison-provider/
https://myhistotripsy.com/
https://nyulangone.org/news/nyu-langone-cancer-specialists-use-pioneering-histotripsy-technology-noninvasively-treat-liver-tumors
We did not know about this treatment when we met with Dr. Lee last month. @wjk posted this week about his discussion with providers that "the desired abscopal effects from histotripsy treatment have yet to seen in patients with liver lesions secondary to pancreatic cancer." Yesterday UCSD told us it might be appropriate after my wife has had some GA treatments. I'm still confused as to why it couldn't be given now as sound waves are not radiation, and therefore should not affect GA schedule. We will ask again.

Your comments are always on point, helpful, encouraging, and appreciated. Thanks especially for your kind thoughts about my wife, which we echo back to you.

Thank you for your kind remarks. I live in the OC and in one of the cities that Gov. Newsome has a lot of disdain for - ha ha. Well we know chemo is effective to a point, so maybe her drs want to see how much of an effect chemo will have on those lesions before beginning any other new treatment.

Do they also do MRI and PET?
Sometimes things do rise due to flu, etc

They have not done either but Dr mentioned PET if trend continues.

What about CA 19 numbers in the 190,000 range. That is where my dad is