2 questions: Interpretation of CA19-9. SBRT methods.

Posted by robee @robee, Mar 6, 2023

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.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Thank you for sharing your experience. My husband is on his twelfth month of gemabraxane and trial drug but we are told fulforinox will very likely be the next step. It helps to know what we might expect before it’s a thing. We didn’t know low platelets were “a thing” before the day it happened. It is nerve wracking with just the 19-9 between scans. Fortunately his was down to 49 yesterday.
I’m also told they can go up a bit and come back down. At MSK.
Your other info is helpful also - thank you.

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Can’t access the link. Says protected.

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Robee,
Thank you for sharing
I am also inoperable and had sbrt at miami cancer institute an affiliate with MSK
I received the 5 day treatment. The last week of Sept. things looked stable and scans last week show a few differences so I will get a PET scan in 2 weeks to see whats really going on..
My c19-9 went down drastically to 4 a month after the radiation. But last week was 16. Still within normal. But Dr didnt like the trend so wants the PET.. to dicifer if its scar tissue or if the cancer is still present ..
And Ive had some bathroom issues last month and increased my enzymes which I think are helping but still has me worried
I have a biliary and duodenal stent
Not that I ever have a day with out some discomfort ..
Prayers for good PET results for both of us .. 🙏🏻

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@mamarina

Robee,
Thank you for sharing
I am also inoperable and had sbrt at miami cancer institute an affiliate with MSK
I received the 5 day treatment. The last week of Sept. things looked stable and scans last week show a few differences so I will get a PET scan in 2 weeks to see whats really going on..
My c19-9 went down drastically to 4 a month after the radiation. But last week was 16. Still within normal. But Dr didnt like the trend so wants the PET.. to dicifer if its scar tissue or if the cancer is still present ..
And Ive had some bathroom issues last month and increased my enzymes which I think are helping but still has me worried
I have a biliary and duodenal stent
Not that I ever have a day with out some discomfort ..
Prayers for good PET results for both of us .. 🙏🏻

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https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic
Try this link.

Thank you for this information. It may be helpful for my husband, as drs told him his pancreatic cancer is inoperable.

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My husband has Stage 4 Pancreatic cancer and received 18 treatments with folfirinox regimen. New scans show some enlargement of tumors and many small lesions in lungs. Dr. changed chemo to Abraxane and gemcitabine.
Ca19-9 was 21,000. Just wondering if anyone has had anything similar and seen good results and if this is worth suffering through the side effects. He is considering discontinuing treatment due to the side effects.

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I have had 16 sessions of filfirinox and now CA19-9s are slightly increasing and it is scaring me of course. I have pet scan today. But this week I was in touch with MSK-Dr. Chris Crane who will schedule me for high dose MRI guided radiation. I will have to travel to NYC and likely have to stay there for a few weeks but he feels this treatment will give better results than standard SBRT. He also mentioned, if my Folfirinox treatments stop being effective, other chemos will be suggested. Currently my most recent scans show "stable" so I plan to get through my daughter's wedding before scheduling my trip to NYC.

Has your husband been given radiation yet?? May be worth looking into. Prayers to you and your husband,

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My husband has the reverse- started with the Gemcitabine and Abraxane and will be switched to Fulforinox when it stops working- I think it’s well worth trying. His side effects are very well controlled and tumor is shrinking. We are wary of the Fulforinox side effects but will certainly try. Radiation may be offered to him also in the future. There are some new KRAS drugs coming and we hope to benefit from those also, God willing.
Prayers to you both.

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@carol23

My husband has Stage 4 Pancreatic cancer and received 18 treatments with folfirinox regimen. New scans show some enlargement of tumors and many small lesions in lungs. Dr. changed chemo to Abraxane and gemcitabine.
Ca19-9 was 21,000. Just wondering if anyone has had anything similar and seen good results and if this is worth suffering through the side effects. He is considering discontinuing treatment due to the side effects.

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I too have Stage IV PanCan diagnosed October 2022. Initial CA-19-9 was 3600. Started fulfinorix treatment. Side effects were mild neuropathy and cold sensitivity. After 6 cycles CA-19-9 rose to 42000 and scans showed progression. Switched to Abrax+Gem. After 4 cycles CA-19 dropped to 1800; after 6 cycles CA-19 dropped to 821 and scans showed considerable shrinkage of tumours in Pan and Liver. Main side effects is fatigue and taste bud changes.

Prayers for your husband.

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@davidtd

I too have Stage IV PanCan diagnosed October 2022. Initial CA-19-9 was 3600. Started fulfinorix treatment. Side effects were mild neuropathy and cold sensitivity. After 6 cycles CA-19-9 rose to 42000 and scans showed progression. Switched to Abrax+Gem. After 4 cycles CA-19 dropped to 1800; after 6 cycles CA-19 dropped to 821 and scans showed considerable shrinkage of tumours in Pan and Liver. Main side effects is fatigue and taste bud changes.

Prayers for your husband.

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Thank you. Helps to know. Sounds encouraging!
My best to you!!

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