Topic: CA 19-9 ....what does this number REALLY mean?

I'm sure this question has been asked 1000X by 1000X CC patients.

We DID ask our Dr, he said it's one way to measure the disease load
in the blood (but I believe its actually the pancreatic cancer tumor maker--but
one of the best they can use for CC as well?)  Right ?? Wrong??

What does this really indicate?  How much should we "hang our hats on it"?

My husband is Stage 4 CC with mets to Lungs and Lymphs--the HIGHEST his
CA19-9 has been so far is 77 (I have seen HUGE numbers on here in the thousands and people have "felt fine").  When Kyle's was at 77 he felt like crap!

He's back in the "normal range" (33) for now...but is this an important number
to pay attention to ...or are other numbers MORE important indicators as to what's happening inside his body??

Re: CA 19-9 ....what does this number REALLY mean?

Hi Dorien,

I think the CA19-9 is just one tool doctors use. Lauren's doctor never seemed to be alarmed or happy when hers went up or down. He looked at the whole picture with all of her blood work. He seemed to be way more concerned with how her scans looked. I would much rather have shrinking or disappearing tumors rather than put so much stock into one test. Lauren's CA19-9 was always in the 200's and then went way down. She actually seemed more healthy when it was higher, so I am one that does not think it is as important, at least in Lauren's case, as other people think it is. Just my opinion and I am sure others will disagree. Bless you and your dear husband.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

3 (edited by thebompie4 Thu, 27 Jun 2013 08:32:00)

Re: CA 19-9 ....what does this number REALLY mean?

Thanks Pam--  (so SO sorry and sad for your loss again and again).

Our Doctor actually doesn't seem to put much stock in it either--some,
but not a lot--

I was mostly just curious if it was "THE" indicator with this cancer.

I'm more concerned with HOW Kyle is feeling and what the cancer is
doing (shrinking, stable, growing etc).

We knew after Round One of chemo the scans would give us good
news JUST by how he felt...he went from 50% of normal to feeling
about 90% of normal.

We KNOW what the end will be, we have no delusions about where
this disease will take us (it doesn't make us "faithless" just realistic in
my opinion...)

But until we get there--we try to hang on by our fingernails and toenails
to all the good parts along the way.

I have not got too many good words to say about this cancer, and in fact
many of them include a good deal of profanity. smile

4 (edited by marions Fri, 28 Jun 2013 23:37:39)

Re: CA 19-9 ....what does this number REALLY mean?

I agree with Pam, the marker in itself dosn't mean much as it can move up or down for other reasons too.  Generally, physicians watch this number and use it as an additional tool in the evaluation of positive/negative response to treatment.  In your husband's case, it appears to fit - he is feeling better and scans and blood test support that.  Fantastic news.  I am thrilled for you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: CA 19-9 ....what does this number REALLY mean?

None of my doctors have used the CA 19-9 as anything other than an indicator. It has gob up and down with not much alarm anywhere. I think they just use it as part of the picture. My current onc says when it holds steady or falls its a good indicator when linked with other things. So I don't let the numbers worry me too much... Of course since we all know about this marker, it is hard NOT to watch it.
My doc was happy my numbers are almost normal when paired with the normal bilirubin, weight gain, and feeling healthy. Praying that Kyle continues to feel "pretty good". And my words for this cancer are mostly unrepeatable, too.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.