1. < Pancreatic Cancer

CA 19-9 and pancreatic cancer: What do the numbers mean?

Posted by lisarlee @lisarlee, Feb 1, 2020

What is your opinion on these numbers? Was diagnosed in September 2019 and my ca 19-9 was 7500. New number yesterday was 909 after 9 chemo sessions. Is this good news or a wasted test?

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beachdog | @beachdog | Feb 16, 2022
In reply to @buckslayer "Do Mayo Clinic oncologists use this new chemo treatment? Our doc has not mentioned it as..." + (show)
@buckslayer

Do Mayo Clinic oncologists use this new chemo treatment? Our doc has not mentioned it as an option when Fox and Gem stop working......

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@buckslayer I can't address whether Mayo uses Onivyde. My wife's treatments have been at Johns Hopkins and locally at Advent Health Cancer Center in Central Florida. Onivyde was actually first approved in 2015 and is the only chemo agent which is specifically approved for pancreatic cancer. All of the other agents, 5fu, leucovorin, irinotican, oxalyplaten, cisplaten, gemcitibine, abraxane etc are all generic gastro chemos and have been available for decades. We only learned about Onivyde when I insisted that my wife be put back onto folfirinox because the GAC and GA treatments had failed but her original folfirinox treatments had actually gotten her CA19-9 below 30 and the primary tumor was necrotic when they opened her up. After 2 onivyde treatments my wife's CA19-9 was down by 59% and we're hopeful that we see additional significant reductions and that the previously identified tumor has stabilized or shrunk by the next scan. Good luck to you and hopefully your doctor has other options or trials available.

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1 reply
buckslayer | @buckslayer | Feb 16, 2022
In reply to @beachdog "@buckslayer I can't address whether Mayo uses Onivyde. My wife's treatments have been at Johns Hopkins..." + (show)
@beachdog

@buckslayer I can't address whether Mayo uses Onivyde. My wife's treatments have been at Johns Hopkins and locally at Advent Health Cancer Center in Central Florida. Onivyde was actually first approved in 2015 and is the only chemo agent which is specifically approved for pancreatic cancer. All of the other agents, 5fu, leucovorin, irinotican, oxalyplaten, cisplaten, gemcitibine, abraxane etc are all generic gastro chemos and have been available for decades. We only learned about Onivyde when I insisted that my wife be put back onto folfirinox because the GAC and GA treatments had failed but her original folfirinox treatments had actually gotten her CA19-9 below 30 and the primary tumor was necrotic when they opened her up. After 2 onivyde treatments my wife's CA19-9 was down by 59% and we're hopeful that we see additional significant reductions and that the previously identified tumor has stabilized or shrunk by the next scan. Good luck to you and hopefully your doctor has other options or trials available.

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Thank you for this reply, I appreciate it! My husband is currently on a maintenance-type dose of single agent gemcitabine and it seems to be holding things in check for now but I will definitely be asking his oncologist about Onivyde when we see him next week in Rochester. CA 19-9 remains high (around 5000) but we are nearly three years out from his Whipple surgery and still glad to be here - hoping for many more years. Take care!

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1 reply
buckslayer | @buckslayer | Feb 16, 2022
In reply to @buckslayer "Thank you for this reply, I appreciate it! My husband is currently on a maintenance-type dose..." + (show)
@buckslayer

Thank you for this reply, I appreciate it! My husband is currently on a maintenance-type dose of single agent gemcitabine and it seems to be holding things in check for now but I will definitely be asking his oncologist about Onivyde when we see him next week in Rochester. CA 19-9 remains high (around 5000) but we are nearly three years out from his Whipple surgery and still glad to be here - hoping for many more years. Take care!

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PS, any issues with insurance covering this drug treatment?

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2 replies
beachdog | @beachdog | Feb 18, 2022
In reply to @buckslayer "PS, any issues with insurance covering this drug treatment?" + (show)
@buckslayer

PS, any issues with insurance covering this drug treatment?

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My wife's insurance is covering it. Commercial insurance through my former employer which actually is self-insured administered by UHC. The infusion center was concerned about coverage and applied for a subsidy from the manufacturer, Ipsen. They do have a subsidy program but we didn't need it.

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charliegolfrep | @charliegolfrep | Feb 19, 2022
In reply to @buckslayer "PS, any issues with insurance covering this drug treatment?" + (show)
@buckslayer

PS, any issues with insurance covering this drug treatment?

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No problem with Humana PPO. In fact over 7 years, whipple, all types of chemo, sbrt radiation, and Creon, have never been turned down by Humana for anything. They have been great

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 20, 2022
In reply to @fatherray "To LML -your statement "feeling of threat" is profound, I was not able to phrase it..." + (show)
@fatherray

To LML -your statement "feeling of threat" is profound, I was not able to phrase it as that. And denial crops up also - reverts to childhood thought process for me; if not recognized it may go away. My spirituality is very sincere with daily thoughts of that I am here. Six years now and fighting for more life and daily prayers of thanksgiving.. We have to keep the LIFE a very superior element of our thinking. Your last sentence "Cancer --- and continuing to the end of your paragraph", I recall when the Dr. spoke the word cancer - can only describe my brain as expanding and retracting. I asked my son who was standing near me if he was okay with this - he said yes; and everything ran its course since then. Please try to move past what we feel is our life sentence - I try to live in the thoughts of Brother Lawrence, "The Practice of the Presence of God". Wishing you peace and courage. P.

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@fatherray, I bet many can related to the feeling of your "brain as expanding and retracting" as you tried to comprehend the words of the doctor telling you that you had cancer.

When were you diagnosed with cancer? Was it pancreatic cancer?

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jk2 | @jk2 | Apr 29, 2022
In reply to @colorafo19 "My husband started out at 24,000!!!! He is now down to 64." + (show)
@colorafo19

My husband started out at 24,000!!!! He is now down to 64.

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Tail pancreatic cancer.
I started with a CA 19-9 of 690 and stage 3. One month later, it was 505, the next 190 and the last, two weeks later after my 5th of 6 chemo (alternate weeks ), 93.

It is my understanding that this tumor marker shows ALL tumors, so part of the number may even be non cancerous tumors.

I'm now being scheduled for a CT scan, and another test for 6 weeks of 5 days a week radiation.

When the CT comes back, I'm hopeful that this scourge of my bodies own making, will show totally or almost totally dead, as I demanded in my thoughts and dreams.

My doctor, her PAs, all the staff and the facilities at Jupiter Medical Center's Anderson Cancer Center, are the best I could hope for.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 29, 2022
In reply to @jk2 "Tail pancreatic cancer. I started with a CA 19-9 of 690 and stage 3. One month..." + (show)
@jk2

Tail pancreatic cancer.
I started with a CA 19-9 of 690 and stage 3. One month later, it was 505, the next 190 and the last, two weeks later after my 5th of 6 chemo (alternate weeks ), 93.

It is my understanding that this tumor marker shows ALL tumors, so part of the number may even be non cancerous tumors.

I'm now being scheduled for a CT scan, and another test for 6 weeks of 5 days a week radiation.

When the CT comes back, I'm hopeful that this scourge of my bodies own making, will show totally or almost totally dead, as I demanded in my thoughts and dreams.

My doctor, her PAs, all the staff and the facilities at Jupiter Medical Center's Anderson Cancer Center, are the best I could hope for.

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The decline of your CA 19-9 numbers sound encouraging, @jk2.

Did you have surgery as well as chemo? How are you doing on the chemo? Managing side effects okay?

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1 reply
jk2 | @jk2 | Apr 30, 2022
In reply to @colleenyoung "The decline of your CA 19-9 numbers sound encouraging, @jk2. Did you have surgery as well..." + (show)
@colleenyoung

The decline of your CA 19-9 numbers sound encouraging, @jk2.

Did you have surgery as well as chemo? How are you doing on the chemo? Managing side effects okay?

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No surgery (yet). Told I tolerated chemo (3 different drugs) amazingly well. Most recent, 5 of 6, not so much.
CT and PET moved up. 6 weeks of 5 days a week radiation. After that, surgeon consult.

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leighs2011 | @leighs2011 | May 2, 2022
In reply to @colorafo19 "Yes he has had scans that definitely show the tumor is gone. His last PET Scan..." + (show)
@colorafo19

Yes he has had scans that definitely show the tumor is gone. His last PET Scan showed his abdominal area is free of cancer. Unfortunately it has metastasized to his lungs. It was caught early and the nodules are very small.

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I found that your situation is interesting. My situation is similar but different. I have stable reoccurrence tumor in pancreas and mets to the lungs as well that are small with small growth. I had these larger lung mets ablated successfully but now 20 or so small ones. So maybe if your mets nodules grow bigger you can have them ablated. Good luck!

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