Rising CA 125 levels (again)

Hi all,

I hope everyone is as well as can be expected and taking advantage of the nice weather!

I had my Avastin infusion today and blood test results and my CA 125 levels continue to rise - now at 123 from 89 three weeks ago (it was 17 in March). The breast cancer marker is also rising in line with the CA125 . As I've also had breast cancer (twice), I'm getting really concerned that some disease is back. The nurse said that the markers are only one indication and as the scan I had 3 weeks was clear, that I should try not to worry. Ha! This is easier said than done......., however, I am feeling very well, apart from some abdominal bloating and I'm just hoping this rise is due to Avastin........

Has anyone experienced a rise in breast tumour makers in line with CA125?

regards

Juliet

37 Replies

oldestnewest
  • Hi Julie

    I'm on about 14 out of 18 avastin. My ca125 is rising steadily. My oncologist says as long as I'm feeling ok not to worry. But that's easier said than done!

    Also apparently I don't get a scan unless I get symptoms. Thinking about paying for a private one

    Take care

    Judy x

  • Hi Judy

    That's exactly what I've been told too - if I begin to feel unwell , have pains or lose energy then I'm to contact them and perhaps the oncologist might have the next scan, which is scheduled for Sep/Oct, brought forward. As I'm feeling well, I'm hoping to remain this way, and blame the Avastin for this rise in tumour marker levels........

    Take care you too - when is your next blood test?

    Juliet

  • A week on Monday. Seeing consultant that day as well. Avastin on the Tuesday. Will let you know what happens !

    Judy

  • Yes please do an good luck!

    Juliet

  • I had my Avastin today too - feeling well and no symptoms. But my CA125 is rising too - today it was 300 - back in April it was 20. I had a scan showing no disease in June, so I'm going with that and trying not to worry. Will speak to my onc at beginning of August.

  • Hi Harpist,

    Thanks for your response.......it seems like perhaps Avastin is the common denominator here?

    Will you let us know how you get on with oncologist in August?

    Thanks!

    Juliet

  • Will do! it's amazing how just hearing a number changes how you feel - perhaps it's better not to ask! Bit of a psychological game! Have emailed my CNS so will let you know what she says in the meantime.

  • Oh, she's emailed back already - she's a star! Here's whatshe says - 'we are still in new territory with Avastin. we know it has a positive effect on tmours but it does appear in some women to elevate markers. We do rely mainly on symptoms and scans - CA125 is helpful but justa marker and we don't treaat on the basis of CA125 alone. I have some ladies who do not want to know their CA125 results as it just makes them worry.' So basicallly there are unknowns with Avastin. Good answer!

  • Thanks - more or less the same as what I heard!

    We'll just have to keep up the positive attitude and "don't hurry worry!"

    Juliet xx

  • That's right! Went out with some friends for coffee, had an amazing giggle and forgot about CA125. Way to go :)

  • Keep it up!!

  • Have just spoken to onc today when in for BRAC testing - she raised the issue of the rising CA125 and wants another blood test done next week - depending on result they will re-scan me. Gulp.

  • Hi Harpist

    Your oncologist seems to be proactive with this - fingers crossed that scan is clear. Will you let me know what your blood results are next week? I have more bloods on 11th August.

    I'll be thinking of you!

    Juliet x

  • Thanks! Will let you know what happens when I see onc on 1st August. x

  • Everything crossed!

  • My Ca125 is now 600 so they are going to scan within the next 2 weeks to see if anything's going on. Digging deep....

  • I'm thinking of you! I'm on holidays at the moment and I'm due for Avastin and bloods next week. I'll let you know how I get on. In the meantime , try not to stress too much - remember thus could be down to Avastin

  • Thanks Juliet - trying not to stress as we won't know till we see the scan, but did have a meltdown when she mentioned chemo again if there is disease there - it's my first knock back. Will get myself back on track. Enjoy your hols! x

  • Hi Harpist

    Going for Avastin today - I have had a painful leg since for the last 10 days - I'm hoping it's a side effect of Avastin and nothing more sinister. When are you getting results of scan?

    Juliet

  • Hello Juliet

    I was thinking about you having your tests today. I have just received my Ca125 results from yesterday and they have also gone up again to 85. Like Judy I have just had my 14th Avastin. I spoke with the CNS and she has emailed my Oncologist and suggested a scan. I don't know whether I will get one as she did say the Oncologist may want to wait until after avastin unless I have any symptoms. I am also feeling fine apart from a few avastin aches. I should know by next week. I think I will also be positive and blame the avastin. I will let you know

    Ann x

  • Thanks Ann - it seems quite common that CA125 rises with Avastin - I think we just need to hang on in there and be positive!

    Juliet

  • Hi Ladies ye seem to have a common denomination, Avastin? I am beginning to wonder does it do what its says on the tin? I am stable at the moment and in May was told my 125 was okay. What okay is I dont know. I feel well at the moment more energy and no aches apart from my hip. I had xrays and mri which showed inflamation but I know I really need to see my gp to get full picture. The Onc got reports of xrays and it wasnt anything to do with OC.

  • Thanks Suzuki - it seems that too many of us are experiencing the same - so I think I'm going to stop worrying and blame Avastin!

    Juliet

  • Hi juliet - god these makers are buggers aren't they! !

    Just wanted to say that prior to my debulking op 2014 I had every tumour marker done known to man! One of the most common breast marker was raised ( ca something or other ) so was immediately dispatched off to breast clinic which I found more terrifying than anything tbh! All was fine and had my op - repeat bloods then showed my breast marker was normal!

    I was then told that breast markers are often raised in 75% of ladies with OC so I guess I'm trying to say hang in there and hopefully that'll be the same scenario for you! Wishing you all good luck and love xxx

  • Thanks Maz - it's a relief to hear that breast cancer markers are often raised - when I asked the nurse yesterday she just said that there is a correlation with OC and breast cancer which really didn't explain anything!

    Right back at you with good wishes!

    Juliet

  • Hi Julie. I have been on Avastin since Jan 2015. Saw oncologist today for review before next treatment due on Monday, and my ca125 has gone up to 290 - it has been creeping up since before Christmas 2015. She echoes what others have said in that she is not concerned as its a gradual rise and would only request a scan if I develop symptoms - I am currently feeling well and symptom free (apart from knee problems which are not related). So I'll join the rest of you in trying not to worry and keep everything crossed for all of us. Take care. Ali xx

  • Thanks Ali - we are in the same boat as lots of other ladies it seems!

    So............let's all be positive!

    Juliet

  • Hello ladies,

    Im also on Avastin and blasted CA125 has been steadily raising. I have to be honest I have been stressing, however this post has made me realize that maybe just maybe it is due to the Avastin. Am feeling hopeful now for my scan results on wed.

    Wishing you all the best xxx

  • Hi Asma

    Good luck on Wednesday and let us know the results !

    Juliet

  • Hi, So just had a call from my oncologist who said that my scan was clear :) Sigh of relief!

    She will however continue to monitor the levels and we will discuss it in more detail tomorrow.

    hope this helps you to relax and enjoy the weather x

  • Great news! And thanks for letting me know ....it really does help!

  • it has gone up again :( was 181 today from 151 3 weeks ago. my oncologist said at my appointment yesterday that there is no research to show avastin having this affect on people and it may be microscopic cells of cancer returning! i questioned why i was still on the avastin if it wasnt working for me and she didnt really have an answer. this has left me a little dejected as i suppose i expect her to know all the answers and unfortunately she does't.

  • Hi

    I can totally understand your dejection - my last scan was clear also and the nurse agreed with me when I suggested that there could be microscopic cancer cells. I'm not exactly sure what microscopic cells can mean - does it always mean that cancer is returning or are they just something that might not develop in to full blown cancer? Can anyone on the site here enlighten us ? I'm beginning to feel discomfort around my abdomen and I'm bloated and more tired than normal, but I honestly don't know if this is my imagination running away with me as a result of worrying! I am known as a very positive person, but I struggle sometimes with this blasted CA125 rise.

    On the other hand - our scans are not showing any disease - so we need to focus on that!

    Take care

    Juliet x

  • Hi Asma

    I downloaded this link about CA125 you might be interested to read- it's very informative and states that biologic therapies like Avastin can raise CA125.........http://www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf

  • Thank you soo much for that, i needed to read it :)

    I also spoke to the nurses on the ward today and they said they often see an increase in tumour markers with certain medication. Avastin effects kidney function and also the bowel lining and abdomen lining all of which can cause a raise in CA125.

    As my hubby says stop stressing about the what ifs!

    so Im going to try and enjoy my time now and start worrying again in 3 weeks time when i have another blood test!

    lots of love Asma x

  • Hello Ladies

    Just to add to the throng I have just had Avastin no. 15 and my CA125 has been creeping up in slow steps but the same score for the last three. I have also just had a scan, my last one was in January as I have had bad sciatica and worried that it could in some way be connected to the baddies. Results next week. I saw a professor in London recently and he said that Avastin possibly causes CA 125 levels to rise, so I think we should all try and stop worrying. Best wishes to all you lovely brave warriors . Sophia

  • Hi,

    After reading all the posts from ladies in the same situation I have decided that I am not going to worry - this site is a fantastic resource for support !

    Juliet

You may also like...