Stage 3c OC, ca125 rising slowly

[Vanessa1993]

Hello, this is my first time posting here. My mother was diagnosed with stage 3c ovarian cancer in 2017, she had a very long debunking surgery from 9am to 7pm, then she had weekly infusions of carbo/taxol from December 2017 to April 2018. Treatments were stopped although her scans were never completely clear. She went without any problems for 6months until cancer started growing again in November 2018. She started a clinical trial of a parp inhibitor and an immunotherapy Avelumab. She has been on it for almost two years; her scans today showed NED for the first time, everything was clear but her ca125 is slowly rising now. From April 2020 to now, it went from 4 to 6 to 7 to 8 and today it is 10 although her scan is clear for the first time ever. Has anyone ever experienced that? The doctors are saying That she shouldn’t worry at all. But I’m a bit scared because the numbers keep going up.

[Archeveritas]

Many things can effect the ca125. Normal is 0-30, so your mom is still at a great number. My number bounces around between 3-10. Every person is different. My ca125 before surgery was 1600. Kind of puts things in perspective. That is so great that your mom is doing well. Take the gift each day has to offer. My mom has been gone for 7 years and I miss her every day.

[Vanessa1993 in reply to Archeveritas]

Thank you so much!!

[stanner58]

I had surgery in September 2019 for Oc 3c. I finished carbo/taxol in January. My ca 125 was at 42. I had a ct scan & it showed I was clear. When I went for a one month check up it was rising. After having 1 ct scans & a pet scan they found it went to my lymph nodes in upper abdomen. The ct scans did not detect it since it was small, but the pet scan did. After maybe 6 weeks they started me on Doxil-/mvasi. My numbers kept rising. One month ago it was 586. Then the next 2 weeks it finally went down to 563. I have been on this since April. I’m waiting for my ca 125 results from the last Wednesday. Analyzer broke so I have to wait till Monday to get results. I pray that it went down again.

[Archeveritas in reply to stanner58]

Was there any suggestion to have radiation on the abdominal lymph nodes? That is what I had done. I pray your numbers go down again.

[Vanessa1993 in reply to stanner58]

I pray it goes down!!

[Vanessa1993 in reply to stanner58]

Also talk to them about clinical trials! My mom is currently on a parp inhibitor and immunotherapy

[Salavie in reply to Vanessa1993]

I have been an a part inhibitor as well Zejula. worked for about a year now my numbers are rising into the 600 range find out more at the end of the week

[stanner58 in reply to stanner58]

Well I finally got my ca125 report from last Wednesday. It is up to 926 now😢 I will be starting carbo/ gemzar next Wednesday.

[Zand]

My first time posting as well! There are so many similarities in your mother’s experience to my own. Also diagnosed in 2017, ovarian cancer 3C. Debunking and 19 weeks weekly chemo followed by a parp inhibitor. I want to assure you that it’s normal for ca125 numbers to fluctuate, but please track them so if they continue to rise keep keep voicing your concerns to the oncologist. I’ve had really good care but I do believe that you have to keep advocating for yourself and your loved ones. Your mother is so lucky to have such a caring daughter.

[Vanessa1993 in reply to Zand]

Thank you so much!! Her next appointment is in 2 weeks so we will see what her numbers are

[Canoer]

Aloha! My numbers jumped around from 7-11. When you have a doubling from one blood test to the next, so say 11 to 22 then I'd definitely recommend getting another scan.