CA125 rising

I was diagnosed with OC 3c in September 2016. My CA125 was over 9000 at that point and rose to over 11000 as I started chemo (weekly paclitaxel and 3 weekly avastin and carboplatin). I had surgery in January 2017 and have had 7 weeks more chemo since. I have two more weekly sessions of paclitaxel to go then nine months of three weekly avastin. My CA125 dropped to 124 three weeks ago but I was upset to find that it had gone up to 130 this morning. I was seen by a different oncologist today who didn't seem to understand why I was upset. Even if my CA125 had stayed the same it would be much higher than it should be. I certainly don't want it to start rising. I know that 6 is not a lot but 130 is still high and I've nearly finished my chemo.

I know that I should feel grateful that my CA125 is not still in the thousands and that CA125 is only one of the cancer indicators but I am really struggling to stay positive at the moment. Has anyone else been left with such a high CA125 after chemo and surgery? is it a sign that the cancer hasn't gone away?

20 Replies

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  • It can change by a few points ether way , if tested in different labs . I was left with some stranding after finishing carbo/ taxol but the Avastin got rid of that. Good luck. X

  • Thank you Debonair. I'm glad the Avastin was so successful for you. I have quite a lot of that to come so hopefully it will do the same for me. Wishing you a happy Easter weekend x

  • Hi

    Can totally understand how you are feeling I am obsessed with my CA125 and when it went up after surgery was devastated.

    Hang on in there , just think about how low it is now compared to where you started. I was told it was the overall trend that was important . This is likely to be just a blip as you know the CA125 can be affected by all sorts! The good news is you have been so responsive so far and as you say your chemo isn't finished yet . Take a deep breath and , stay strong for the rest of your treatment . Your team have done a good job so far so keep the faith .

    Best wishes and hope you feel well enough to enjoy the Easter weekend . Love Kim x

  • Hi Purple-Iris

    Thank you for replying to my post. I'm glad that I'm not the only one obsessed by the numbers but I agree it could be a blip. I really hope so. You are right, my team has done a good job so far. I'm just having a bit of a wobble I think. I must try to stay more positive.

    I hope you have a lovely Easter weekend too xx

  • Hi Kim

    My ca125 fell further on Avastin...so with any luck yours may do the same. Mine has never been ultra low and I'm not sure it was under 35 at the end of chemo...so maybe the Onc is right and you shouldn't worry? (Haha ...I know that's a sick joke for us ladies but maybe don't worry as much?)

    L xx

  • Your story is very similar to mine. Op in Jan. Chemo delayed due to complications.

    My numbers were 119 post surgery. 12 weeks later 129.

    I've only two more chemo's and they've withdrawn Avastin.

    But I'm keeping positive this is MY pathway, that I will get there.

    We are all so unique, no two diseases respond the same. Drugs seem so varied,

    So much more research needed!!!!!

    Air your worries, this is your life and no one is going to look after you like your own self. Xxx

  • Thank you Jessica-Diane for taking the time to reply to my post.There is certainly a need for more research, you are right. I'm sorry that they've withdrawn your avastin but you're right we must continue to face this horrible disease with positivity. It mustn't win xx

  • Welshand, My doctor changed labs and my CA went up 5 points!!!! Then I had bloods done by ANOTHER lab and my CA went down by 6 points. I have had variations within the SAME lab when they installed NEW equipment. I then had another CA change when the range they measure went from 0-34 as normal to a new range of 0-38 as normal.

    So, there can be lab variables at play here. Your CA has dropped more than 10 fold. You're headed in the right direction. I have sat in the infusion suite (US) next to women whose CA NEVER comes near normal range. The dear woman next to me was finishing her first line of chemo and her CA was 3600. So, hopefully, the avastin will kill the rest of your cancer. Tesla

  • Thanks Tesla. That is really interesting to hear the variation between different lab reports. I hadn't even considered that as a possibility. It's also encouraging to hear of people fighting this horrible disease with CA well out of normal range. I just sometimes feel like the only one with high levels when I speak to other warriors.xx

  • Stop. Breathe. It will be ok. You know that treatment worked for you. Understandibly everything in your body feels like "the cancer". But it's not, but it's normal to feel like you do at the moment. Time makes it easier x

  • Thank you Ruby for your support. It is really appreciated xx

  • My team have always said it's the trend that matters and that's a very small rise compared to where you were. It often continues to come down a bit after treatment. You'll presumably have a CT scan when you've finished and that will give you much clearer results. Try not to worry though we all know how hard that is xx

  • Thank you for your words of support Lesley. Yes I will have a scan in a few weeks time. That will give more information and hopefully allay some of my worry xx

  • Hi lovely,

    My special person is obsessed by her CA125 as am I, she's gone from 10.8 to 1000 in 3 months her highest yet we couldn't compute why it has risen so much in a short space of time as she's showing none of her normal symptoms and the pain she is getting she said it feels like an infection however a urine test said no so we're obviously back on the chemo train 🚂 soon however as we've said until we get scan results we don't know what's going on. We're hoping it was someone else's results but we very much doubt it. It's all part of the great Teal journey and we'll take it as it comes.

    As everyone has to. Please don't worry about your CA125 rising a little bit with more treatment it will likely drop xx

  • Thank you Lovely

    I really appreciate your words of encouragement and support. I'm sorry that your special person is having such a bad time at the moment. I too send best wishes and hugs xxx

  • The chemo will still keep working away when you are finished so dont be alarmed just yet. If your consultant was happy you should go along with that best wishes

  • Suzuki, you mention an important point. My CA continued to go DOWN 3-4 months after chemo ended. I had not thought about that until just now!

  • Thank you Suzuki x

  • Hello Welsh......My CA125 has fluctuated by 40 points at times. But, my doctor said it is the trend they look at. There are many factors that impact the test results, so try not to worry.....easier said than done, I know. It is only one of the indicators, so be mindful of how you feel, and then they'll look at your scans as well. We're all in the same boat!

    Thinking of you........JudyV

  • Thank you Judy.

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