1. < Pancreatic Cancer

How important is rising Ca19-9 if CT is stable re: having surgery?

Posted by mbcfl @mbcfl, Dec 30, 2023

I was diagnosed with stage 1 pan can September 2023. Tumor was 1.8 cm in the neck. I took 2 cycles of Gemzar/ Abraxane in Oct and Nov. After the second cycle, CT showed the tumor had decreased to 1 cm and Ca 19-9 had dropped from 700 to 300.
However, the chemo caused an irregular heartbeat, multiple PVC’s and bronchial pneumonia and pneumonitis. Ten days after my second cycle, I was hospitalized at Moffitt Cancer Center for 5 nights and required a nasal cannula for my oxygen levels. The pneumonitis was resolved with steroids. My surgical oncologist told me to stay off the chemo and I saw him on Dec. 20. Another CT done the day before showed the tumor was .9 cm but the tumor marker had risen to 1400. So on 12/22 a diagnostic laparoscopy was done. Direct visualization did not show any evidence of tumor. Two abdominal biopsies were done along with peritoneal washings.
I was told if everything came back negative, surgery would be done. Also, my surgical oncologist informed me he was leaving Moffitt in Feb and his last surgery he would do would be Jan 12, 2024.
Fortunately, I found out yesterday the test results were negative.
But since the tumor marker was so high on Dec 20, I am now scheduled for a repeat PET scan on 1/2 (I had a negative PET done Oct 2023) and they will repeat the Ca 19-9 as well. Then they want to restart the chemo, maybe Folfironox,( which I understand is even harder to tolerate), and talk about surgery in the spring.
I reminded them of the adverse effects the prior chemo had on me and I didn’t want to miss my window to have an opportunity for surgery.
I have an appointment 1/3 to discuss the next PET and Ca 19-9 results with the medical and surgical oncologist.
My concern as the surgeon is leaving soon is that may affect his attitude regarding doing the surgery. I have worked hard since I was hospitalized to get strong and I have been walking 45 -60 minutes most days, eating well and juicing. So I feel physically ready for surgery and am fearful restarting chemo first will have a similar outcome as the previous regime. Or worse.
Also, I have fortunately been asymptomatic since my diagnosis.
Their rationale to do more chemo is due to the high tumor marker level, even if this next PET is negative.
I feel very strongly that we need to proceed to surgery should this next PET still be negative. But am I missing the larger picture by not being receptive to restarting chemo first?
Any feedback prior to my meeting with my oncologists next week would be greatly appreciated, thank you!

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mbcfl | @mbcfl | Jan 1 9:28am
In reply to @lilliejane2 "First, let me wish you a Happy New Year filled with total recovery and no worries...." + (show)
@lilliejane2

First, let me wish you a Happy New Year filled with total recovery and no worries.
My story was different, but I also had rising CA 19 9 levels without concrete evidence of recurrence. After having surgery 2 years ago..also Jan 12, I was cancer free. Then I had 6 months of gemcitabine and abraxane for another 6 months. I was cancer free for 20 months. CA 19 9 had started to rise, and CT scan showed an "area" of concern with several lymph nodes. Had a follow up MRI, which did not show that area and showed lymph nodes had shrunken. Was scheduled for an EUS...endoscopic ultrasound..which found no lymph nodes and no area of concern. At that point my CA 19 9 was over 400. The physician told me my pancreas looked healthy. 8 weeks later I had another CT, which showed lymph nodes and a mass on my pancreas that was about 2 inches x 1 inch. I was then put on 5FU..a modified version of Folfirinox. I am on a reduced dosage, and also have opted not to take oxaliplatin. Just to go back a bit, prior to the gemcidibine and abraxane , I was given Folfirinox and reacted terribly to it. My oncologist at the time never told me they could adjust the dose.
I had almost immediate vomiting and a fever. So, they put me on the gemcidibine combo.
With the recent "recurrence" 3 months ago, I am now on 5FU. Have had 7 infusions.
Lymph nodes have reduced and CA 19 9 has fallen by more than half.
So, the question about folfirinox being worse...yes, I find it worse than gemcitabine and abraxane. But, I havent really lost much hair on it. The nausea from it is much worse than Gemcitabine combo, and i may be sick for 5 days. Also experiencing muscle and joint pain and back pain. Fatique is not too bad.
So, it's all confusing. I am so grateful that numbers have fallen and lymph nodes have shrunken. After next infusion, I have a new CT scan and we'll see what has shrunken even more.
Keep visualizing being healthy and strong and in complete remission with no evidence of disease.! I'm sorry that this may not be very helpful to you, but I hope it gives you some peace and reassurance to know that we are surviving and are very capable of thriving.
Best wishes to you. I'll be thinking of you.

Jump to this post

Happy New Year to you as well. Thank you for sharing your journey and inspiring words. Sounds like you are doing OK. Wishes for a total recovery for us both!

REPLY
mbcfl | @mbcfl | Jan 1 9:38am
In reply to @lilliejane2 "First, let me wish you a Happy New Year filled with total recovery and no worries...." + (show)
@lilliejane2

First, let me wish you a Happy New Year filled with total recovery and no worries.
My story was different, but I also had rising CA 19 9 levels without concrete evidence of recurrence. After having surgery 2 years ago..also Jan 12, I was cancer free. Then I had 6 months of gemcitabine and abraxane for another 6 months. I was cancer free for 20 months. CA 19 9 had started to rise, and CT scan showed an "area" of concern with several lymph nodes. Had a follow up MRI, which did not show that area and showed lymph nodes had shrunken. Was scheduled for an EUS...endoscopic ultrasound..which found no lymph nodes and no area of concern. At that point my CA 19 9 was over 400. The physician told me my pancreas looked healthy. 8 weeks later I had another CT, which showed lymph nodes and a mass on my pancreas that was about 2 inches x 1 inch. I was then put on 5FU..a modified version of Folfirinox. I am on a reduced dosage, and also have opted not to take oxaliplatin. Just to go back a bit, prior to the gemcidibine and abraxane , I was given Folfirinox and reacted terribly to it. My oncologist at the time never told me they could adjust the dose.
I had almost immediate vomiting and a fever. So, they put me on the gemcidibine combo.
With the recent "recurrence" 3 months ago, I am now on 5FU. Have had 7 infusions.
Lymph nodes have reduced and CA 19 9 has fallen by more than half.
So, the question about folfirinox being worse...yes, I find it worse than gemcitabine and abraxane. But, I havent really lost much hair on it. The nausea from it is much worse than Gemcitabine combo, and i may be sick for 5 days. Also experiencing muscle and joint pain and back pain. Fatique is not too bad.
So, it's all confusing. I am so grateful that numbers have fallen and lymph nodes have shrunken. After next infusion, I have a new CT scan and we'll see what has shrunken even more.
Keep visualizing being healthy and strong and in complete remission with no evidence of disease.! I'm sorry that this may not be very helpful to you, but I hope it gives you some peace and reassurance to know that we are surviving and are very capable of thriving.
Best wishes to you. I'll be thinking of you.

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What type of surgery did you have ?Did you have chemo first and if so, for how long?

REPLY
1 reply
lilliejane2 | @lilliejane2 | Jan 1 9:42am
In reply to @mbcfl "What type of surgery did you have ?Did you have chemo first and if so, for..." + (show)
@mbcfl

What type of surgery did you have ?Did you have chemo first and if so, for how long?

Jump to this post

I had Whipple surgery prior to having chemo. After 6 week recovery from surgery, had 6 months of gemcitabine/
abraxane chemo.

REPLY
gamaryanne | @gamaryanne | Jan 2 8:03am
In reply to @mbcfl "Thank you for sharing. What chemo were you on prior to surgery? Is the CT DNA..." + (show)
@mbcfl

Thank you for sharing. What chemo were you on prior to surgery?
Is the CT DNA a biomarker/ liquid biopsy? Can this be done without having surgery?
How are you doing currently? Hopes and prayers for you🙏
Appreciate your feedback…

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@mbcfl I did folfurinox for a year before pancreadectomy and liver resection. Was NED for about 6 months then went on GEMZAR in July prior to surgery in October. I’m back on it through January. The doctor doesn’t know but I am taking February off to help with my first grandchild on the way! I am committing this month to studying what could be next for my situation (KRAS G12-D mutation) trying to keep things stable. Everyone’s situation is so different I know!

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