CA 19-9?
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My current (second) onc doesn’t pay any attention to CA19-9. He only pays attention to C scan data. I believe based on my own data the relative movement (increase/decrease) can provide useful information.
Duke
If my level is 9 what does that mean. Is that good or bad. I just recently had the test done so I don’t know what my number was before I did chemo and radiation. My oncologist doesn’t believe in worrying or doing this test. It was my surgeon there did the test. My alk phos levels were really high though something like 220.
Lauren, thanks for the beautiful picture as San Francisco happen to be my favorite place as well.
Did you ever eat at Aliotos on the Wharf? The owner is a cousin to my Teddy!.Lauren…. On it’s own the number does not mean much however; the trend up or down can be indicative of response to treatment. It is for that reason that it is used as baseline at onset of treatment and then continuously watched over time.
Beautiful picture, Lauren. I live near San Francisco and cross the Golden Gate Bridge or Bay Bridge regularly. Always I am amazed at how truly beautiful the City is.
Hugs,I ike what your ONC said , Karen. C-19-9 is just an indicator. My husband is also stage 4 CC but he opted not to have chemo which is really not effective. He decided instead to try CBD. If you would like to learn more about it, you can go to greenbridgemed.com and find out. Dr. Frankel said that when cancer cells die they produce energy just as they do when they grow.
My husbands tumors can’t be seen on a PET scan anymore, but his CA-19 is still rising. The doctor said they would continue to go up for a while and then fall. We are cautiously optimistic.
I wish you great luck!!
JeanThanks everyone. Perhaps when I start treatment, the number will prove more predictive. My mind can try to take in that a super high number may not necessarily be indicative of something/anything but I’ll sure feel better when I can understand what the number means for me (if/when that happens).
Many thanks to all!
KarenHi Karen,
My husband was diagnosed with ICC in November 2010. In his case, CA19-9 has been very predictive in terms of his response to treatment or disease status. Our oncologist told us the ‘trend” of CA19-9 (either down or up) is more important than just a number from any particular test. Also CA19-9 can increase under other circumstances (e.g. infection).
Hang in there!
LeeKaren…..we like things clearly defined and numbers happen to do that. And, yes those with positive Lewis antigen, these numbers can mean something when combined with other reports as well as taking in account the overall wellbeing of the patients. The main purpose for CA 19-9 is to evaluate patient response to treatment, hence they watch the “trend” up or down.
CA 19-9 can be evaluated for other reasons as well. I would ask the physician to clarify her response. It may allow you to relax a bit.
Hugs,
MarionFor some ca19 does not help as an indicator. Mom has been between 42 an d 47 since DX. Also, some have warned here on the board that levels may rise when treatment is working since more of the cancerous cells are being sloughed off into the blood from the tumor.
My CA19-9 started at 636 before treatment, dropped to low 50’s after 8 rounds of carbo/gem and 2 rounds of gem only. Since then it’s climbed to 220. Those roughly correlate to the tumor size in my liver.
Interesting is that with the clinical trial I am trying to get into, they aren’t even testing for CA19-9. They put everything into CT scans every 8 weeks.
Duke
Dear Sherri, I don’t believe the CA19 is looked at alone. I think that high number has to be combined with other equations. Not sure as mu husband’s CC was never about the CA. You might try our search engine at the top and type in ca19 and a ton of posts should appear on the subject. Unfortunately with the holiday weekend I guess everyone is busy and that is a good thing, however, I am sure you will have more answers tonight or tomorrow. Like Karen said, keep up a stead fight and get other opinions which is extremely important. We have had patients with Stage IV DX and told they have months to live and got another opinion and are still here after years. Some even were able to have surgery. So we do have a lot of HOPE and Miracles DO happen.
Karen,
I’m new to this group too but I can tell you that they got me moving in the right direction. I found a new onc and he has started a new chemo treatment and has sent my biopsy slides to Foundation One to find a targetable mutation. I will also find out hopefully tomorrow when I will be going to MD Anderson to see their doctors and get other opinions. I am stage IV with my cc.Keep moving and fighting
SherriThanks Sherri. I think the thing that freaks me out about the numbers is that the top of the “normal” range is less than 100 somewhere. It’s kinda hard not to get stuck on numbers when they are so extraordinarily high.
Thanks for chiming in….that’s one of the things that I appreciate about this forum. It gives us a chance to truly see that we are not alone.
Hi Karen,
I understand your confusion about ca 19-9. Mine are high and they keep telling me not to put so much into them. I do know that my gem/cis didn’t work and my cancer spread and my numbers increased. Everyone seems to have a different opinion about those numbers so I’m hoping they don’t mean we can’t still fight this fight. I have tried to stop thinking about them and put the engergy to finding a treatment that will give me more time.I know I didn’t give you answers but I wanted you to know you weren’t the only one confused about them.
Sherri
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