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2 questions: Interpretation of CA19-9. SBRT methods.
Hi. I was diagnosed with inoperable pancreatic cancer stage 4. Locally advanced. I am in my 16th session if folfirinox. After session 3-4, irinotecan was removed due to slurred speech and leg shakes. But it was reintroduced for sessions 14 and beyond at a slower rate and so far so good. But the oxilaplatin was removed after session 13 due to neuropathy. Right before session 13 my CA19-9 started to slowly increase. Originally over 2500, then dropped to 65 after session 12. Now it’s creeping back up. Today it was 222. One doctor says it’s cuz cancer is active. Another said this fluctuation is not unusual. I know some docs are very black and white and some sugar coat things. These blood tests are the only thing we have between the two months scans to “see what’s going on” and the increase is scaring me. Scans right before session 13 showed stable disease and no evidence in liver at all. MRI last week showed the same. Waiting for pet scan which was ordered for re staging and possibly adding radiation (SBRT) treatments.
Has anyone had this happen with the CA-19-9??
Also SBRT was suggested by local docs using the standard 5 treatments but I read an article from memorial Sloan Kettering where it’s done in several sessions during an MRI in order to do less damage to near by organs. Has anyone done this??
Below is article in case it helps someone else:
https://urldefense.com/v3/__https:/www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic__;!!KGKeukY!zaJIRXFrpB6huZCIYcARFzB0I5fttlwHf9uZG6KLcGnUxGc0FMjEA4pxXzKyW9dJeVzUc8sSoyyreT46EPq-JTLFeebqGQ$Thanks for your input for both questions.
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My husband has had terrible side effects from Gem+Abrax-extreme fatigue and lethargy and can't function for 4 days.
Wondering if anyone else has experienced this.
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1 ReactionI have but not to that extentent. I am always fatigued but it isn't debilitating. Usually only the first couple days. Talk to his oncologist to see if there is anything that can help with the extreme fatigue
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2 ReactionsThank you-will do!
I recently finished 12 cycles of Folferinox, and I always felt strong fatigue for four or five days after treatment, then I would feel a little better, but throughout the entire 2-week cycle there was always some fatigue. I believe it's the body trying to fight off the chemo, so I rest and pick up activities a little bit at a time and exercise a little bit more each day that I feel ok. Best wishes.
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4 ReactionsThank you. My husband also had treatment with Folfirinox. It worked for about 8 months until tumors started to grow again. He did experience a similar reaction like yours. Had fatigue and didn't feel well for about 4-5 days, but definitely nothing like the symptoms he's having from the Gem+abrax. Dr. said we'll try just Gemzar alone and see how he does.
Best wishes to you!
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3 ReactionsThank you!
Hi, my latest scan showed 40% decrease in PanCan to and 20%+ decrease in liver tumor. A week later CA-19-9 increased from 821 to 1850. Prior results were also decline. Initial CA-19-9 with diagnosis in Oct 2022 was 3595
Am on Gembar protocol.
Healthcare team said while they prefer to see CA-19-9 decline .. they are treating this as outlier and will retest in a few weeks
Anyone else experience this fluctuation on heels of scans that showed significant shrinkage?
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2 ReactionsWhen my Husband was on Folfirinox we saw his Ca19 increase at first also. His Dr. said it was possibly due to the chemo killing the tumor cells and they were being released into the blood stream. Kinda makes sense-not sure if there is scientific data to back it up, but made us feel better. In future tests his numbers began to decrease. Hope yours do also!!
Best wishes
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4 ReactionsThanks. Have also heard that the number can reflect all kinds of things and thus no clinical decisions made based on numbers alone.
Had also heard that it could be from dead cancer cells. The deader the better!
Prayers for your husband.
Let's both keep killing that bad ol cancer!
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5 ReactionsMy understanding of CA-19-9 is that it does or does not confirm a cancer diagnosis. If a person gets checked for it before treatment starts and then get tested after a period of therapy it may let the Doctors know if the tumor is shrinking.