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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colorado19 | @colorafo19 | Feb 24, 2020
In reply to @colleenyoung "@lisarlee, how did the appointment go with the oncologist earlier this month? @lml, how are you..." + (show)
@colleenyoung

@lisarlee, how did the appointment go with the oncologist earlier this month?
@lml, how are you doing?
@colorafo19, having found the small nodules in his lungs, what are the next steps? Will he get additional treatment or watch and wait?

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Thanks for asking. He has been getting chemo every other week for the last 5 months. We will be back at Mayo Clinic at the beginning of March to see how things responded. Hopefully a chemo holiday will be coming soon!

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Colleen Young, Connect Director | @colleenyoung | Mar 3, 2020
In reply to @lml "Thanks for asking. Last night I had my first episode with a high fever, post splenectomy..." + (show)
@lml

Thanks for asking. Last night I had my first episode with a high fever, post splenectomy in October. I wanted to put my head in the sand but I did make myself do what I was advised to do and went to the ER. And in a far away city where I’m working this week. Source of infection still undetermined; more follow up scheduled back at Mayo Rochester on Friday because the labs are looking odd. The feeling of threat, am I ok or is my cancer back, is never that far away. I wish denial worked but it really doesn’t. I’m back into blood draws, checking labs in the app. Cancer is never really out of mind. And while I write this, I realize I am among the luckiest - caught early, margins clear, etc, but the memory of hearing I had cancer and the fear of dying is still fresh and might not be so different.

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@lml, Good for you for getting to ER. It was the right thing to do although the head in the sand may have seemed easier. May I ask what you found out from your appointment on Friday?

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lml | @lml | Mar 4, 2020

White count is still out of range but is trending down. Probably had a viral infection. No risk of sepsis at this point. Thanks for checking.

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debsid | @debsid | Jul 14, 2020

We rely on seeing the tumor markers go down to show we are going in the right direction.

Have any of you had your ca19-9 go up after chemo and rad/onc? Hubby's went up after consistently going down. Said it could be shedding cells. Trying to learn more about it... very concerning. Thanks. Believing in healing

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ginathemom | @ginathemom | Jul 14, 2020
In reply to @debsid "We rely on seeing the tumor markers go down to show we are going in the..." + (show)
@debsid

We rely on seeing the tumor markers go down to show we are going in the right direction.

Have any of you had your ca19-9 go up after chemo and rad/onc? Hubby's went up after consistently going down. Said it could be shedding cells. Trying to learn more about it... very concerning. Thanks. Believing in healing

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I've read so much about the CA19-9 markers and still get confused about it. I heard that it could rise after starting chemo or being off it and then back on it.... Has it gone up more than one time?

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ginathemom | @ginathemom | Jul 14, 2020

Hello- I would say this is GOOD news. With the decrease in CA19-9 you can "assume" you are responding to treatment......

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ginathemom | @ginathemom | Jul 14, 2020
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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Wow- that's amazing. Can you share a little bit about his story and treatment?

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debsid | @debsid | Jul 14, 2020
In reply to @ginathemom "I've read so much about the CA19-9 markers and still get confused about it. I heard..." + (show)
@ginathemom

I've read so much about the CA19-9 markers and still get confused about it. I heard that it could rise after starting chemo or being off it and then back on it.... Has it gone up more than one time?

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No, just since finishing radiation/chemo pills. He was wiped out the first 2.5 weeks after rad/onc with a lot of fatigue and brain fog. It finally lifted and he's feeling good. Then, we got the new number, also from a different lab. See doc in a couple weeks and will repeat tests. Possibilities could be bad test, shedding, cancer.

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GP2 | @mira24 | Jul 16, 2020

CA19-9 is for watching trends, not to be used as absolute number every single time. If his number is going down, that is good. In my case, neither Radiation or Chemo ever changed my result. Scans are really what will tell you what’s happening, then the blood tests are used as additional info.

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debsid | @debsid | Jul 16, 2020
In reply to @mira24 "CA19-9 is for watching trends, not to be used as absolute number every single time. If..." + (show)
@mira24

CA19-9 is for watching trends, not to be used as absolute number every single time. If his number is going down, that is good. In my case, neither Radiation or Chemo ever changed my result. Scans are really what will tell you what’s happening, then the blood tests are used as additional info.

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Thank you. We are looking at it as shedding and believing in healing. You're right, looking for a dark pet.

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