CA 125 high but stable: My mom was diagnosed in... - My Ovacome

My Ovacome

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CA 125 high but stable

msuspartan profile image

My mom was diagnosed in October 2019 of OC with symptoms of ascites. Her Ca 125 was 113K (yes that is correct), she went 6 rounds of chemo and last July had her surgery. Post Surgery her CA was around 300. Her KFT were high so could not start any maintenance medicine. Her CA went up to 1500, then she was put on 300 mg of Olaparib, Her latest CA is 209. Her last scan was clear when her count was around 1500. So It looks CA is very subjective and depends on person to person. Is that true, any insight here will be helpful..thanks

13 Replies
OvacomeSupport profile image
OvacomeSupportAdministrator

Hi there msuspartan

I’m sorry you’ve not had any replies to your post yet. I hope some members of the forum community may be able to share their experience with you soon, but in the meantime I wanted share this resource about the role of CA125 which I hope may be useful for you.

The Foundation for Women’s Cancer are a non-for-profit organisation based in the U.S, who support research, education, and public awareness of gynaecological cancers. They published a booklet in 2017 titled ‘CA-125 levels: Your guide’ which explains more about CA-125 and how it is used in a clinical setting. It’s available to view via their website here: foundationforwomenscancer.o...

The booklet explains that whilst CA125 can bring valuable insights, it is a non-specific marker that varies vastly from person to person.

As this is a U.S resource, the organisations listed at the end may not be as relevant for our U.K/ non-U.S members.

If you would like to talk about this further with a member of our support team, you can contact us directly through the forum, via our Support Line 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk, or via the instant chat on our website. We are also available to talk by booking an individual video call on Zoom or Skype if that would work better for you. All our services are available Monday – Friday, 10am – 5pm, U.K time.

Best wishes

Annie – Ovacome support

Annie,

This is very helpful. I will certainly look into these resources.

Really appreciate your time for replying.

Thanks again.

Hello, I have had a high ca125 but nothing on the scan. In my case it was put down to having inflammatory arthritis… any inflammation can send the levels up. My oncologist feels that the trajectory of the ca125 is more indicative than the level. Hope that helps xx

msuspartan profile image
msuspartan in reply to Lyndy

Thanks..Lyndy. this is helpful. How frequently you floor for scan.

Thanks

CA125 levels vary widely from person to person. Mine were only 147 at diagnosis and 12 weeks later at the start of chemo were still just 289. Yet I am stage 4 high grade and inoperable! My oncologist says their movement up or down can be a good indicator for an individual, but that patients are so different and respond so differently to treatments that you cannot compare on person's levels to another. He says he relies on CT scans not CA125 levels. Hope all goes well for your mum x

Really appreciate your perspective, I wish you all the best in your fight. Keep going strong. Best Wishes.

Hello there,I am on Rucaparib which is also a parp & I have been taking this since December 2020. This followed the chemo which finished in October 2020 & was a first recurrence. When I started the parp my CA125 was 18, & it gradually went down to 10, but in March I had the Covid jab & then the second one and since then my CA125 has risen & the last test it was 114. Fortunately I feel really well,but naturally concerned & so my Oncologist sent me for a CT scan,which is clear thankgoodness. My Oncologist has said that sometimes the actual drug can cause inflamation. So for the time being I am just getting on as normal.

I had my booster covid jab on 21 September, & I am due another blood test on 8th October which will be interesting.

My advice would be to listen to the Oncologist as we are all different.

Take care, Caleda

Personally for me I find if my Ca125 number is rising it means something is up

BUT

My doctor relies on the scans and the trends to make determinations

Not just CA125

Hi. Mine is the opposite of your mum’s. It was 8 at diagnosis and 6 at recurrence, so it’s OC no use at all. Just to say it’s extremely variable among individuals!

msuspartan profile image
msuspartan in reply to delia2

Thank you. I wish you well..

Hi I agree with most of the folks who have commented about CA125.

I believe it acts as an indicator of inflammations in many cases but also is not in itself diagnostic.

Its is helpful when used in conjunction with CT scan and/ or MRI.

Also useful to the radiology oncologist if you're receiving proton therapy.

I do not have OC but I do have endometrial serous stage IIIc uterine CA.

My CA 125 was very helpful as an indicator to response to chemo.

Make sure you have a thorough discussion with your oncologist as they can explain it to you as it pertains to your particular treatment plan.

Good luck and best wishes from across the pond in California.

Hello, hope your mum. Is doing OK, my CA125 was not as high as your mums but I had 6 rounds of chemo then surgery then another 3 rounds of chemo, I was able to go onto 600mg olaparib soon after chemo this was about 6 months ago. My CA has gone down from 800 at worst, went down to 500 now it is at 11. As the CA125 count has responded well to chemo op etc they are using that as my tumour marker, however to tell them if I feel any changes etc. Regular blood tests which have been good so far. I am feeling well and had little side effects some days better than others but its only 9 months after op and your body takes a while to adjust to the changes I think. Ca125 can be disrupted by other infections etc so is not always a true indicator but they seem to think it is in my case. However as I said if you dont feel right or ascites seems to start contact your team to talk it through. Ps drink plenty of water to protect your kidneys. I have low magnesium level for which I have infusions. Hooe that's of some help? Take care x linda

Thank you Linda for such a great insight and sharing your experience. I wish you well in your Journey. Regards..Rahul

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