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

Pancreatic Cancer | Last Active: Nov 16 6:14pm | Replies (41)

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@steveron

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!"

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Replies to "good advice as always and a remarkable path to get where you are today. after 7/22/24..."

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.