What is your CA125 level?

My Mum's CA125 level at diagnosis was almost 13,000 and even though I have scrolled through the posts about CA125 levels, I cannot see any posts from ladies who had values anywhere near the tens of thousands like my Mum!

How did your levels change over the course of your treatment because when asked, the medical staff never say anything about expected improvement of the marker number which gets me worried.

12 Replies

oldestnewest
  • Just a quick reply. Don't panic, mine was 20,000+ at diagnosis and dropped to 12 after surgery, chemo etc.

    L4W

  • My reply won't help you I'm afraid!!! My CLA125 level was only 30 when I was diagnosed. It spiked at 83 after surgery then down to 35 after chemo 1. Went down to 17, then 15 and reached 13 at my last chemo, up by 1 to 14 one month post last chemo (end Aug) and it was up again to 21 this week at my 3 month appt. I'm having a CT scan on .Monday but I think I may have a problem with my intestines as I've been having pressure pangs for some time now and that can influence the 125 reading.

    The CLA reading cannot be taken as a stand alone , it gives false negatives (like me) and false positives ie high readings where there is no cancer. It can also be influenced by many other conditions. Mind you I'm following the trend of my results now now and not the actual number.

    I'm sure there are other ladies who had high high readings like your mum. It may be just that your mums 'normal' level iwill be high.

    Take care

    Clare xx

  • Your reply did help me, so thank you! Yes, following the trend of results is better, I've even made a graph which is visually nice to see the slope going down!

  • My mom's was about 3,400 at diagnosis. I don't know what it was after her debulking surgery, but after three weeks of chemo it was down to 95, the following 3 weeks it was 44, then 13, and then 4. At the end of her treatment it was a 3, which I was blown away by. It's been that low for several months, but while on Avastin maintenance it has slowly been creeping up one or two points ever 2 months or so, and is hovering around a 10 now.

    I have read numerous people over the last year who have had very high numbers like your mom, and even higher. I think one time I read someone who had like a 50,000! I think removing the main tumor (and as much other cancer as possible) itself will lead to a big drop in the number, before chemo even begins.

    The CA-125 is usually an indicator of whether treatment is working or not, but it doesn't always drop right away. Sometimes it'll go up a little, then come back down. Try not to worry about the number, as it can drive you crazy (believe me I know).

  • Wow your Mum is doing so well! Good on her! Even though it's crept up a little, it's still within the normal range :)

    Yes I'm trying not to concentrate too much on the values, as apparently considering symptoms is a better indicator of improvement. I could feel myself going crazy haha!

    I'm hoping that there will be a decent reduction after her surgery

  • I was over 8000 on diagnosis and over six chemos it has gone to 212 so still not that low but I face surgery next week so will see after that. I would advise you to not get too stressed about these numbers - easier said obviously, but it also depends on how the whole human feels and how much they get out of each day...

    All the best, Netti

  • My mums was 1,300 then after 3 chemos was down to 77

  • Hi mine was 700 before surgery. After surgery in December 2015 was 47, after 1st chemo was 19.. after 6 chemo's with avastin was 5.. I'm now on just Avastin since July and it's 5... this treatment ends in March.. then a CT scan.. still have twinges and pains which I try to ignore and not stress about! Love Michelle x

  • I was diagnosed 3b and my CA125 was 48. After surgery it was 9. Steady downhill readings and steady at 6.5 at 9 months out.

  • There is a very good article on CA125 in the Autumn newsletter. It put it all into perspective for me and indicated that it is a very rough marker.

    healthunlocked.com/ovacome/...

  • Thank you! I just read it and it did put my mind at ease!

  • Mine was up to 10000 and it reduced by approx 30% per week over my 18 weekly treatments until it got back to normal and I got the all clear. Just quarterly blood tests now.

    Ask the nurse what the CA125 reading is after each blood test but always ask them to test for CA125 as sometimes the lab doesn't do it if not told to.

    Catherine

You may also like...