Lynpraza and brca1 positive

[Roulasim]

I am on Lynpraza 13 months now-so far so good…my ca125 was 2,8 and next month(because we check it every month) it went 4,9 should I worry?..it has been 4,9 in January 5 months after I had started Lynpraza and it fell down again to 2,8 in August-I had my COVID vaccine in June and I also had to mention that in August I had a serious back pain-an inflammation actually and took some pills to help me handle it…Do you think I should worry with this rise of my Ca125?..because I’m pretty worried actually

[Lyndy]

Hello, I am also BRCA 1 on Lynparza. My ca125 is 17 but steady. I suspect the movement up then down then back to where it was before may well be due to the vaccine and your back problems. That kind of thing has happened to me. It’s always in the back of my mind, what if it goes up and it’s back? I think we may have to accept we live with uncertainty. Maybe see what next month brings and raise your anxiety with your oncologist or CNS if you are worried? Sending you a big hug..the anxiety is just horrible xx

[Roulasim in reply to Lyndy]

Thanks a lot for your reply!I wish you the best in your life!

[Cumbrianlass5]

My CA125 is all over the place, depending on whether I have had a virus, covid injection or cough. Infections and inflamations affect it a lot. But my scans are all good. Onc says it is a good indicator for some women but not others. He relies on scans and says not to pay too much attention to CA125 levels. Your covid injection and back inflamation will have certainly played a big part in rising level but try to remember it is still not high. Best wishes x

[Roulasim in reply to Cumbrianlass5]

Thanks a lot-the truth is I’m quite terrified but I try to have positive thoughts

[Cumbrianlass5 in reply to Roulasim]

I think we are all often terrified. Every ache and pain can send your brain into a spin. We read too much into everything. It is not always easy to be positive, so be kind on yourself. Have a panic if you need to, then try to get busy with something to take your mind off this crazy wretched roller-coaster we are on. All best wishes x

[OvacomeSupport Partner My Ovacome Team]

Hi Roulasim

I’m so sorry to hear that you’ve been feeling so worried. I can see you’ve received some informative responses to your post but wanted to share this resource about the role of CA125 which I hope may be helpful 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 does vary greatly from person to person. This information highlights that CA125 can fluctuate or become raised for several reasons and is not necessarily cause for concern. Please consider discussing this with your clinical team who will be able to give you tailored guidance based on your own individual circumstances.

If you would like to talk about this with a member of our support team, please give us a call on 0800 008 7054. We’re here to chat through anything that may be on your mind, Monday – Friday, 10am – 5pm. If you’re based overseas but are interested in connecting, we can also schedule 1-1 video calls if that may work better for you.

Best wishes

Annie

Ovacome support