CA125 LEVELS

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the fella
the fella Member Posts: 2
in Ovarian Cancer #1
Hi, I am writing from England and thought i would pick the brains of you guys in the states. My wife has stage 3c Ovarian Cancer, she has had the surgery, full hyster etc etc, has had 3 (of 6) lots of chemo (carbo/taxol)and i have concerns regarding her CA125 levels.

Pre-op her levels were 1300 plus, since then they have gone to 580 then 610 and just before her 3rd session 520. So the trend is downward, just not fast enough. As the levels should be 0 - 35....we are a big way from that.

So i guess my questions are....

1: How normal is it for the levels not to drop quickly
2: Does that signify anything...in anyones experience

My concerns obviously are that the chemo isnt doing its job, well not properly anyway. Does she need a new chemo regime????? currently its every 3 weeks.

On the positive side, apart from losing her hair, she is tolerating the chemo like a little soldier and i am so proud of her but equally so scared of losing her.

Any input is welcome and i thank everyone in advance for taking the time to read this.

Take care

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
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    Hi fella
    I too am from the UK and eventhough I have Primary Peritoneal Cancer (which is the same tissue as Ovarian and it treated the same) my experiences and CA125 levels were similar to your wife (1280)I couldn't have surgery but after my 1st carbo/taxol treatment my numbers had dropped to 499. After treatment 4 I too had a rise (from 161 to 389) and was really upset. However my next CA125 was down to 220. My oncologist was very puzzled and could not explain the rise (as my CT scan showed a reduction of cells everywhere) I then spoke to my chemo nurse who suggested it was quite normal for numbers to go up near to the end of treatment and we should not be too worried as long as the trend was downward.

    I too am able to tolerate it reasonably well and I had my final one last week and am looking forward to my hair growing back.

    I hope this has helped and keep in touch with how your wife is.

    Love Tina xx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #3
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    Hi fella!!!
    I am in the uk
    Hi fella!!!

    I am in the uk to, where abouts are you?
    I am not sure why this could be, although it is good that the number dropped by roughly half after the first chemo, way to go!
    My mums ca125 was within normal limits when she finished her chemo, we thought we were out of the woods, however when she had her baseline scan at the end of treatment, the cancer was starting to grow back , Her ca125 levels dropped all the way through chemo and finished on about 8 if I remember rightly.
    I don't want to scare you by putting this, I am just telling you about my mums experience.
    However most women do achieve remission from their first line treatment, I think about 10 % don't and for those few who don't there are lots of other drugs to try.
    Ca125 levels can jump for all sorts of reasons, hopefully it is just a blip, and I am sure if the chemo wasn't working it would have continued to rise and not gone back down again.
    Praying for you , and your partner, it's bloody tough going through this. Let us know the outcome and I hope some of the other ladies can shed a bit more light on it for you.

    Liz.
  • the fella
    the fella Member Posts: 2
    #4
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    Mum2bellaandwilliam said:

    Hi fella!!!
    I am in the uk
    Hi fella!!!

    I am in the uk to, where abouts are you?
    I am not sure why this could be, although it is good that the number dropped by roughly half after the first chemo, way to go!
    My mums ca125 was within normal limits when she finished her chemo, we thought we were out of the woods, however when she had her baseline scan at the end of treatment, the cancer was starting to grow back , Her ca125 levels dropped all the way through chemo and finished on about 8 if I remember rightly.
    I don't want to scare you by putting this, I am just telling you about my mums experience.
    However most women do achieve remission from their first line treatment, I think about 10 % don't and for those few who don't there are lots of other drugs to try.
    Ca125 levels can jump for all sorts of reasons, hopefully it is just a blip, and I am sure if the chemo wasn't working it would have continued to rise and not gone back down again.
    Praying for you , and your partner, it's bloody tough going through this. Let us know the outcome and I hope some of the other ladies can shed a bit more light on it for you.

    Liz.

    Thanks........
    ....for your responses. Its strange cos for every article i might read which says 'watch the CA125 levels', i can find one that says it isnt vitally important - always.

    We are down in Sussex and i cant fault the care my wife is getting, i just thought i would come onto the US site to see if any US views/experiences give food for thought.

    She has her 4th chemo soon so fingers crossed that the levels drop...i will of course update as and when and once again thanks for the feedback and best wishes for one and all.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #5
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    the fella said:

    Thanks........
    ....for your responses. Its strange cos for every article i might read which says 'watch the CA125 levels', i can find one that says it isnt vitally important - always.

    We are down in Sussex and i cant fault the care my wife is getting, i just thought i would come onto the US site to see if any US views/experiences give food for thought.

    She has her 4th chemo soon so fingers crossed that the levels drop...i will of course update as and when and once again thanks for the feedback and best wishes for one and all.

    I am sure the ladies from
    I am sure the ladies from the states will pipe up soon!!!
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #6
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    Mum2bellaandwilliam said:

    I am sure the ladies from
    I am sure the ladies from the states will pipe up soon!!!

    My numbers went up
    when I started my second line chemo(carbo/taxol) in January, after the first infusion my CA125 actually went up from about 1500 to over 2000. After the 2nd infusion it halved to 1000 and after the third one 2 weeks ago it halved again to 500 but has since gone up to 650. The oncs tell me it's nothing to worry about as long as the general trend is down.

    When I had my first line chemo nearly 2 years ago now it didn't happen. My numbers just went down steadily from 2500 to 9. They don't seem to know why it was different second time round, but don't seem too bothered by it. Perhaps because it's not happening to them!
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #7
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    sarahb74 said:

    My numbers went up
    when I started my second line chemo(carbo/taxol) in January, after the first infusion my CA125 actually went up from about 1500 to over 2000. After the 2nd infusion it halved to 1000 and after the third one 2 weeks ago it halved again to 500 but has since gone up to 650. The oncs tell me it's nothing to worry about as long as the general trend is down.

    When I had my first line chemo nearly 2 years ago now it didn't happen. My numbers just went down steadily from 2500 to 9. They don't seem to know why it was different second time round, but don't seem too bothered by it. Perhaps because it's not happening to them!

    Welcome Sussex fella & survivor
    Sorry we have to meet here. You can click on my name or the picture to learn more about my story. I'm in the Midwest USA.

    The CA-125 is not just a marker for ovarian cancer, it is also a marker of inflammation. It is confusing try to sort out what is going on during treatment when the CA-125 is bouncing around. There is inflammation happening as the chemo does its job and your wife is not finished with her treatment yet.

    The CA-125 levels that were done on me after chemo never did show a rise--however, the blood test was only done once a month or maybe even less than that. It's possible that the level went up and down and it was never recorded when it was up.

    Make sure you take good care of yourself in the process of taking care of your beloved wife. Her chances of going into remission are very good.

    Best wishes to both of you.
  • kikz
    kikz Member Posts: 1,345 Member
    #8
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    LaundryQueen said:

    Welcome Sussex fella & survivor
    Sorry we have to meet here. You can click on my name or the picture to learn more about my story. I'm in the Midwest USA.

    The CA-125 is not just a marker for ovarian cancer, it is also a marker of inflammation. It is confusing try to sort out what is going on during treatment when the CA-125 is bouncing around. There is inflammation happening as the chemo does its job and your wife is not finished with her treatment yet.

    The CA-125 levels that were done on me after chemo never did show a rise--however, the blood test was only done once a month or maybe even less than that. It's possible that the level went up and down and it was never recorded when it was up.

    Make sure you take good care of yourself in the process of taking care of your beloved wife. Her chances of going into remission are very good.

    Best wishes to both of you.

    My initial CA125
    was 6900 and went up to 9000 prior to my first chemo. It went down steadily until it reached 800 right before surgery. The day of the surgery, the surgeon told me my reading was 1600. I asked why it had increased and he said he hadn't noticed that and didn't know why. After surgery it was 13, then was 7 the next three tests. In January it was 5. I am due for one in a couple of weeks and am hoping it is still down.

    Karen

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