CA125 on the up

[CookieCake]

Hi, diagnosed 6 years ago with stage 4, had treatment, recurrence 3 1/2 years ago, on olaparib since end of that round of treatment. Bloods every 2 months and ca125 always 5 or 6, in January it was 6 but March up to 11, worried so had it checked this week and now 15. I know still v low and within the limits but as an upward trend I’m now really worried.

I did have a virus 5 weeks ago, has anyone had any experience where their ca125 has risen post virus but when scanned etc were disease free?

[Tracey1207]

hi I’m stage 4 too .. not had surgery but on the oliparib as maintaining I was at 188 13 weeks ago I’m 244 now so getting a CT I’ve had a few infections which is what they thought it might be but it’s still rising so I’m thinking it’s waking up .. wish they’d take it out .. can’t advise but after 6 years I’m impressed you give me hope so continue your regiment it seems to be working .. any tips ?

Take care x

[CookieCake in reply to Tracey1207]

Thank you so much for your reply, and for sharing your situation with me. I hope that you are able to find out what is going on, hoping that all is well x

As for tips, I’m not sure, I do feel extremely lucky all the time, lucky with all the care I’ve received and lucky that chemo has worked for me to get rid of the disease on both previous occasions I’ve always tried to stay positive (very difficult at times) and try to go for a walk daily I also work part time which I think helps

Wishing you well x

[Beatyourself]

Hey CookieCake,

I share your excitement too. I had my surgery year ago after being diagnosed in Jan 23. Am on Niraparib since August and my CA125 was 5-8 ever since surgery. This Jan I had scan and they were not sure if there was no recurrence due to small alterations in abdomen and diaphragm. My CA was 5,9 (lower than in December when it was 8), we repeated the blood check in March and it was 12. First time double digit since March last year … my oncologist was still calm, he said limit is 35 and this just can vary due to different things. Even he would have higher probably now if we measured it. He only wanted to do new blood check in June and CT scan in July. He says if it wasn’t for the medicine he would opt not to do these checks so frequently coz it just gives lot of stress. If I feel good I am good. So i try to think positive as I feel great and strong otherwise but I am also balancing between: be cool but don’t take unnecessary risks. So all in all share your concerns however stay positive and believe in your body ! 6 years further wow !! Gives lots of hope 😘 big hugs,

B

[CookieCake in reply to Beatyourself]

Thank you for your reply. Yes, it’s always a balance with being positive but realistic, I’m certainly hoping that my levels are due to previous virus and it seems that some ladies ca125 is affected by other factors.

I understand about not checking levels too often as can cause stress but I’d always prefer to know, and then know what I’m dealing with x

Wishing you well xxx

[Snooklover]

Hi, I had a similar thing happen but unfortunately it signaled that my cancer had returned. I had a very large mass on my ovary and went in for a full hysterectomy. At that time CA125 was 20 before surgery and 8 after. Pathology said it was grade 1 stage 1 endometrial and ovarian. I had no other treatment than surgery at that time. Similar to you, I was monitored every 3 months and my CA125 was climbing though still “low”. When it got to 15, we did a CT scan, MRI, and liver biopsy in order to find that endometrial cells spread to my liver. I then had 5 rounds of chemo, HIPEC, and 3 more rounds chemo. All this to say, that you should trust your gut and get it checked further. Hopefully it will be for peace of mind, but if there is something, you will catch it quickly. Wishing you all the best! 🙌

[CookieCake in reply to Snooklover]

Thank you for your reply, I’m so sorry to hear what you’re going through, really hope that you get all the treatment that you need.

Best wishes xxx