Topic: CA19-9 levels

Hi Everyone,
What is considered a "normal" CA19-9 level, and what is considered high?   I just had the test done after 1 round of chemo, and I don't believe it was ever charted prior to this.   Mine is 134, which must be on the very high side I think.   I've tried looking it up on the internet but there are no clear answers that I can find.   Too much medical-speak.   Thanks for any insight.

- Suzanne

Re: CA19-9 levels

Suzanne---- 40 is usually looked at as a pretty resonable level.   However you have to remember what is normal for one person is not the same as someone else.  Usually your first round of test is used for your baseline for starting a regimen of chemo and they monitor it from there to get a feeling if chemo is .  Some people run higher than that all the time.  Other s run really low. but from my understanding 40 is normal range, but it will flucuate up and down.  Also your Ca19-9 is not a gauranteed indicated that cc is progressing or not. it's just one off the tools docs use, Scan to be the most popular.
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: CA19-9 levels

Hi Suzanne, Charlie's was in the 1000's one time last year I think, then it went way down.  But now at Wake Forest Medical Center, his oncologist doesn't even use that or if he does, he sure won't tell me so we've decided that's fine with us.  Just like Jeff said, it's just one of the tools.  We're paying more attention to how Charlie feels, looks, is eating, regular or not and of course the scans are the main indicator of what's going on inside.  I wonder if there's no clear answers on it because the medical community doesn't have clear answers on whether it really gives good information or not??  I sure don't know.  I wish you all the best and let us know if you find out anymore about it.

Carol

Re: CA19-9 levels

This is such a strange cancer.  My CA19-9 levels were normal when I was at my sickest last year.

However, my bilirubin counts were off the charts.

Go figure.

Re: CA19-9 levels

Teddy's had been about 17, in February, then 37 in April and 70 in June. That is when they DX that the cancer had returned. We will find  out Friday when he goes to the ONC what it is now. So, like Jeff said, everyone is different. I am beginning to see that this monster strike everyone is so many different ways. Truly what goes for one is different for another.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CA19-9 levels

CA19-9 is a good marker for this type of cancer.

Re: CA19-9 levels

Tumor marker tests are subject to wide variation, and are only meaningful when taken in context of multiple diagnostic tests. When viewed by themselves, they are almost meaningless. Different cancers will express certain antigens and proteins when they are active and growing. For instance cholangiocarcinoma often expresses the carbohydrate 19-9 antigen. 40 is considered a normal level. Some cholangiocarcinomas express this antigen at high levels, some express it just above normal, and some variants will not express it at all even when it is growing. The CA19-9 must be viewed in sequence over a period of months, and then compared with CT scans and liver function tests to give an overall picture.

In my case, my CA19-9 was around 65 when I was first diagnosed. Since I have been on chemotherapy over the last 6 months, it has fallen to 40. This has been supported by multiple CT scans which show no growth over the same 6 months, and liver function tests which are perfectly normal.

Unfortunately, one will see certain cases where the CA19-9 normal or only minimally elevated, yet scans show consistent disease progression and deteriorating liver function tests. So, CA19-9 needs to be evaluated only in the context of the overall big picture.

This is also the case with other cancers. For instance, regular hepatocellular carcinoma (HCC) expresses alphafetoprotein, or AFP. AFP of 9 or less is normal. AFP of 400 or more may indicated a rapidly growing cancer. However, there are some cases where the cancer is growing, but inexplicably is not expressing elevated levels of AFP.

Likewise for prostate cancer, which expresses PSA, or prostate-specific antigen.

I hope this helps to make some sense out of a confusing subject. I have spent much time researching this to try to understand this elusive lab test. Please don't take my explanation as professional. Ask  your onco doc, and don't let him/her go until it is explained to your satisfaction!

Violarob in Texas

Re: CA19-9 levels

Violarob,
Thanks for the lesson. I think you made ca19-9 more clear than I have read before. We all have so many questions, and these types of posts really help.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: CA19-9 levels

Vilarob....Great posting and so informative.  Thanks

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: CA19-9 levels

Hi Violarob - that's as good of an explanation as I have been able to find.  Thank you.  The internet is confusing to me on this issue.   I think I will ask to have both AFP and CA19-9 ran, just for good measure, in addition to comparing with the scans over time.  Right now my CA19-9 is 134, which seems high but I guess we'll see over the next few months if that's high for me or what.  Thanks again for the explanation.

- Suzanne

Re: CA19-9 levels

Just adding to the Ca19-9 info. This marker is non specific and can be elevated when there are blockages and abnormal LFTs and is only a guide. When I had very bad blockage it was in the high hundreds and when I was originally diagnosed with gall bladder cancer it was negative. Don't rely on the marker too much to indicate progress.
My Ca19-9 is sitting around 180 at the moment but fluctuates depending on how blocked I am.
Judy

Re: CA19-9 levels

Hi  - I am also a new user to this website.  My father was recently diagnoised with bile duct cancer which is considered a very rare cancer. He is 79 years old.  He was sent to Piedmont Hospital in Atlanta, GA and seen by Dr. Roshan Shrestha who performed a ERCP test using a new system called a Spyglass Visualization system.  We were told that his CA19-9 was 1427 and the tumor is in the common bile duct, it is in the final stage, surgery is not an option, chemo will probably not have any affect, and radiation might.  That he should get his affairs in order and hospice would be available when the time comes. I can not imagine what my father felt when we were told this.  I know that as his daughter is was very devastating to all who was present. 
However, he started radiation treatments yesterday in Rome, GA - will be taking 25 treatments.  At the same time he is starting oral chemo treatments using the drug, Xeloda. All this is new to our family and we would appreciate any feedback on this.
We do know that prayer does make a difference.

Donna

Re: CA19-9 levels

Donna,
Sorry you have had to make our acquaintance at this site.  My husband was diagnosed a year ago and was told he had only months to live, but thankfully he is still here -  so please do not be discouraged.  You will find many different stories and suggestions on this wonderful site.  Prayers for your Dad and family.
Karen

Wishing all God's blessings!

14 (edited by marions Sat, 11 Oct 2008 12:50:52)

Re: CA19-9 levels

Hello Donna

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: CA19-9 levels

Karen, I also live in New Jersey and am the wife of a cc patient. 
How is your husband doing.  Can you tell me a little about his treatment, has it helped? 
Forgive me for being nosy but I am just trying to get as much info as possible. 
We may be changing oncologist to someone who specializes in these types of cancer....not sure it will make a difference, but not happy with current doc.
Do you use the hospitals and docs in NY or did you find someone great in jersey?
Thanks
Lulu

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

16 (edited by Karen Sat, 25 Oct 2008 13:03:26)

Re: CA19-9 levels

Hi Lulu,
Sorry you have had to look and find this site.  We are a bit discouraged at present.  After intensive research and letter writting to different doctors Rob had Cyberknife treatment in Boston as Beth Isreal Deaconess Hospital in January 2008 treating 3 tumors in the liver.  In July of 2008 he was again treated for a new small liver in the tumor and a mets tumor in the spine.  We just came back from a follow up scan in Boston and the good news is all treated tumors appear "dead", no cancer cells showing.  The bad news there is a new tumor in the liver.  Our doctor has decided to have a tumor conference with other doctors to see what the best course of action is. So I do not have any "positive" news to offer.  How I pray that I did.  It seems no matter how hard we try to zap off these tumors they just keep developing.  I pray for all devastated with cancer.  It is such a waste of wonderful people.
Karen

Wishing all God's blessings!

Re: CA19-9 levels

Karen, great news about the dead tumors.  I'm so sorry about the new tumor.  Charlie also has numerous tumors in his liver.  We were told his tumors are too big for Cyberknife and also wrapped around the bile ducts.  I'm glad Rob was able to have Cyberknife.  Charlie's doctors are also presenting his case to the tumor board.  We're always waiting to hear about something, aren't we?  We're anxiously waiting insurance approval for SIRspheres treatment.  The cancer does seem relentless sometimes, doesn't it? Take care of yourself and keep us posted on the tumor conference.

Carol

Re: CA19-9 levels

Glad to hear from you Karen and glad I did find this site.  I wake up every morning hoping it was all a dream and this wan't happening to my wonderful family.

So happy that some of those damn tumors are dead.  Please tell me about his bile duct tumor...did you husband have a resection?
My husband's whipple was aborted because of two small spots on liver.

My hubby has been doing chemo since mid June...so far not working. 
I don't understand why they won't try cyberknife on him.  I am getting so frustrated because I don't like the answer. 

Karen have you tried some alternative stuff to build his immunity so maybe it will prevent new tumors from poping up? He is so fortunate that he is responding to treatment--now finding a way to keep new ones from appearing. I've read a lot about supplements, vitamin c IV therapy, etc...I think it's worth a try.   

Why the letter writing, what were you asking for from the doctors? 
Maybe I should write letters to find someone to try cyberknife on him?

You are so right about the wonderful people afflicted with cancer. 
I pray everyday that god does not take my husband from me, he is too young.  We have so much life to live.....I need him to be here to see our kids graduate from college soon.  I need him to grow old with. 

I thank god for finding this site, it's great to be able to talk to people who are unfortunately going through the some thing.

Thanks for listening.

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

Re: CA19-9 levels

Lulu....how sad that we have to awake everyday with pain in our hearts for our loved ones.   The reason for the letter writing was Rob refused to take chemo for palliative purposes only.  We could not find a doctor willing to operate...Rob had indicated he would rather die on the table trying to rid his body of this cancer.  I sought alternative methods to operating.  The Cyberknife doctors did indicate that their method was only palliative also and obviously they are right.  How I wish somebody would use the word curative!
Carol...Thanks so much for the words of support.  Please let us know how the SIR-spheres works.  I know waiting on insurance approval is nerve wracking.  Prayers to Charlie and you.
Prayers to each and everyone.
Karen

Wishing all God's blessings!

Re: CA19-9 levels

Hi to all,

I really can't add much to this thread as my experience did not include most of the things all of you are going through, however, I do want to say that I cringed every time I heard the word pallative!  I agree with Karen, I would rather have heard curative. You would think they could come up with something better!!!!!! I will be thinking of all of you & praying that tomorrow will bring better news. I too would rather wake up to more positives & less sadness & negatives, but that appears to be the nature of our situations. Atleast we are all here to help, support & encourage each other.  Good luck to all of you. You are all in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: CA19-9 levels

Karen and Darla, I know what you mean.  The word palliative - not what we want to hear.  We want a cure!  Also, the talk of quantity of life versus quality of life sometimes feels like a death sentence.  But we keep fighting.

Carol

Re: CA19-9 levels

I know it is hard trying to sort it all out. From my experience, the best advice I can give is to make the most of every moment. I wish I had been given the chance to take my own advice, unfortunately in our case it all happened so fast we didn't know what we were fighting & once we did I was so busy trying to understand what was happening & trying to get answers that I feel so much was left undone & unsaid. I am now left with trying to learning to live with & sort out all of my feelings & regrets. Finding this site & all of the wonderful people here has really been a God send for me. The knowledge & support I have gained is unmeasurable & priceless. Again, I wish all of you good luck & no matter what is to come, know there are people here who care and can help & support you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: CA19-9 levels

Hi Donna,

Sorry I did not see your post until today.

I am seeing Dr. Kaugh at Emory Winship Cancer Institute.   I'm sorry to hear about your father.   I know this is very hard for you.
My cancer has not affected my bile ducts yet.  I'm working hard with chemo to try to keep that from happening.

Where in Rome is he getting radiation treatments?  Isn't Tallapoosa in west GA?  I'm in Canton.    Let's keep comparing notes.  I know it would help me.

- Suzanne

Re: CA19-9 levels

Hi everyone,
   I have only posted once. I don't look spend much time on the computer. I have two kids, and spend most time and energy focused on them. And I tend to get down after reading to much.

I am very interested in the tumor markers, I guess because mine seem so high.  You would think that I would be unable to function, but other than some controled pain and a little nausea I feel pretty good. I don't have the latest markers, but should find them out next week after my visit to the Dr. but these are mine over the summer. (June - 5,000. July - 10,000. August 4 - 17,000. Aug 22 - 28,000)  I started a clinical trial in September,so I find out Monday how it is working, or else I will change to do regular chemo. Hopefully this new drug AZD6244 will offer some hope.

Jenn