Hi Everyone..... Sorry to be posting yet again but need some advice and possibly reassurance. Please don't be scared to give me the truth !!

Today at hospital my ca125 had gone up again ..always in 2some. now 28 from 20. I'm due my 5th chemo tomorrow but my platelets too low again so waiting for bloods taken today to see if any change.

My question is why is my ca125 going up whilst having chemo. I'm so scared it's not working. The doctor just said it's nothing to worry about. but it is !!!! My appointment for my 3rd cycle scan apparently got list so they are organising another . They said we can go to Cornwall on the 20rh and Greece in mid July. But is there a possibility the cancer is back? . From all your past experiences what do you think? I just need to know the odds I'm going mad inside my head. Please can anyone tell me their thoughts matter what.... Thank you xxxx

16 Replies

  • Hi I had carbo only and only ever once did they tell me my ca result! I cannot believe its back, your ca is still low but I know it can rise for all sorts of reasons ie infection. Easier said than done but do try not to panic, just aim at going on those holidays, I am sure you will. xx

  • Just to say, I had to ask for it every time it was never offered. There was a month's delay in getting the result as I had to wait for next appointment. However, i found a way round the delay as my GP said give it a few days to get onto system, then ring him for result. Depends on your GP of course!

    Hope all going well xx

  • I think the CA125 was invented to stress us out 😩 However it's been a guide for me. When I had chemo last year they 'forgot' to test me until after number 3. It had risen from 18 to 27. It then fiddled about for a few months then started the rise. Don't waste your well time worrying it changes nothing. Enjoy your holidays and making memories.

    Is it back? I don't believe it ever really goes, just sleeps and you know what they tell you to do with sleeping dogs. I'm going to put a blanket over mine lol

    You could ask for HE4 bloods if it'd help

    LA xx

  • I can sympathize with the fear. Its enough to drive me into total meltdown as the Same thing happened to me. 3 small increases in a row. I don't know much but do know this- different labs will provide a modestly different result. Hard to know if they simply ran test on different lab or machine. Mine went up by small amounts 😳 Mostly during an unfortunate and unscheduled 4 week hiatus from chemo 😰 (i had blood issues and got pulled several weeks in a row). I did just finish my 3rd cycle and it did just go back down. ☺️ <deep sigh>. The nurses look at me like I'm nuts for carrying on about it. And bring up the need for therapy. 😵 That may be, but that CA-125 messes with my head. They all seem to look at big trends not a small movement. While I may not have made you feel totally at ease, take comfort in knowing myself and others are going mad over the numbers. 😩 Misery loves company? I suspect yours will come back down like mine did. The fact we both had blood issues may also not be a coincidence. Hopefully you'll get the drop and can breathe again. Even if it's just due to a different lab running the test. 🙄

    Sorry you are going through the angst but its so nice to have others who know exactly how it feels. 💜💜💜

  • Hi . Can understand why you are worried . Any CA - level under 35 is considered normal . In any woman with ovarian cancer they could have the same levels as you . All blood tests change in minimal amounts , it's wether they are considered to be within the parameters . Try not to worry and I hope your next test shows a decrease .

  • Hi.

    I finished carbo in January. Just on avastin now.

    My CA125 was 16, 18, 19' 20 and last time 29. I was worried but was told it's still in normal range. Im having avastin again on Thursday and am concerned it will have gone up again.

    It's natural to worry. Xxxx

  • My results were around 30 rising to 34 after my final carboplatin. My oncologist is totally unconcerned by this and does not even propose to retest when I see him in 3 months. Take care x

  • I'm due chemo my final chemo, 1st line. Mine is still 121 and rose to 129 during this period. I'm finding out what it is today!! I've put it to the back of my mind because until the day I'm told any different I have to. It's an understandable worry, the fact your consultant says you can go abroad is fab! Keep positive xxx

  • Yes, your bloods have gone up again but they care still within normal limits. I think I read on here once that if they were taken twice on the same day you'd get different results. Please try not to worry. You've still got chemo 5 and 6 to get.

    With regards your wbc count, I was delayed all the time because mine WS low, one time a 7 week delay, another 8 weeks and the odd one or two weeks too. As one Registrar said to me, if the chemo is having this effect on your blood, its bound to be working on the cancer!

    Try to stop worrying, just get through the. Chemo and the scan about 2 weeks After its finished will let your team and you know how your tumours have reacted to the treatment. Staying positive is the best Advice I can give you. Ann xx

  • Hi, I found blackpudding helped get the bloods back up if the platelets were low before Chemo. Also the CA125 rising is probs due to the chemo, so I wouldn't worry to much and focus on getting the chemo out the way and aim for the holidays!! I had a post op holiday, a post chemo holiday and three months later....a real holiday. You'll find your bloods will all go up and down like a yo yo during chemo and as I said just focus on getting the chemo out the window and concentrate on your holidays.xx

  • I read that the cancer cells send off CA125 as they die off so I don't think you need to worry.

  • CA 125 is a marker and not definitive. Many factors affect the test, elevating the outcome. In fact, anything under 35 is great. Having said that and having been there, your apprehension and worry is perfectly normal.

    After my 6th Carbo treatment my platelets took a nosedive, and so did my red and white cells. I was due to get on a plane, going to Spain (i live in the US) to celebrate and after a shot of Neulasta and a blood transfusion I made it. My oncologist assured me, after new bloodwork, that my platelets were coming back up and once they start they come roaring back. I had one bad day 4 days later and I have been great ever since. Although I still wake up at night with those same old feelings. You will get through this just fine.

  • I'm just going to echo what everyone else has said. Carboplatin actually causes some inflammation, so this elevation isn't surprising. It could also mean that your resting CA 125 is somewhere in the 20s. Try not to fret---I know, easier said than done :)



  • I know everyone is different but I would jump for joy if my reading was 35! This was my lowest reading after first round of taxol/ carbo finished ( on diagnosis it was over 3000!!) . I know other ladies have even higher readings than that..... it feels as if it's all a game as many wind us up and it does....

    even with avastin ( now stopped) it was doubling at each testing and I have yet to find what he latest is after 300 3 weeks ago....

    Fret not as everyone says it changes nothing....🌈


  • Hi Ricky......AS all the ladies said, try not to worry. There are many reasons for the CA125 to rise, and yours is still in normal range, so I think you're in good shape.

    Good luck with the rest of your chemo, and I hope you have a wonderful vacation!

    Wish I could send some platelets your way, but will have to settle on positive thoughts! JudyV

  • I'm on second line treatment with carbo only. I can only echo what others have said - yours seems a fairly minor change within normal range, and probably within the range of natural or testing variation. (My onc says if you change labs for your test you will get a different result!) Your team is monitoring you and the treatment is ongoing, so try and focus on your forthcoming holidays and let your medical team do the worrying for you!.

    Sending lots of best wishes Dawn

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