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OC stage 3c Clinical trial may not be working anymore

Vanessa1993 profile image
3 Replies

Hello all,

So my mom had another blood test today and her ca125 went up to 13. Her last blood work was 2 weeks ago and it was 10 so in two weeks it went from 10 to 13. Her oncologist said the clinical trials may not be working as well as in the beginning but they will continue to monitor her closely and not change anything. She is currently on a parp inhibitor and immunotherapy and has been on for 17 months. Her Ca125 went from 4 in March to 13 in July. The doctor is saying if it keeps rising in the next 4 months then her treatment will have to be changed. Her last CT scan was 3 weeks ago but everything was clear. I just feel like something is brewing but we are not sure what. Has anyone experienced that before? If a clinical trial stops working what’s the next set of action. The oncologist said she may start on a chemo or go on another clinical trial if ca125 continues to rise. Has anyone ever experienced this? Anything will help

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Vanessa1993
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Cjbloomq profile image
Cjbloomq

Hi Vanessa, I have OC3c since 2013. Went thru all treatments and now have been on parp inhibitor Zejula since 2018. My ca125 goes up and down and cat scan is clear outside of a spot I've had for some time but it's shrinking. Doc says not to worry about numbers I'm still below the 32 mark . Mine as gone from 7 to 10 to 15 to 17 to 22 to 17. I think stress in my case can make it go up and down and possibly inflammation somewhere. I know everyone responds differently on any medication but I've been fine on Zejula. It's hard to not worry about whats next but keep the faith and keep living as best as you can.

Vanessa1993 profile image
Vanessa1993 in reply to Cjbloomq

Thank you so much! My mom is taking a parp inhibitor called Talazoparib as well as an infusion of an immunotherapy. We are going to continue keeping faith and praying. I just talked to a woman at the hospital who 16 years NED and she said she’s had lots of ups and downs and it happens all the town. I’m just so anxious about everything. Thank you so much again!

lovemy3dogs profile image
lovemy3dogs

I was told by my oncologist that the numbers can vary plus or minus due to other factors and as long as it is in the acceptable range, you're ok, especially if her CT scan is clear. The CT scan is a much better indicator than the CA125 which can react to inflamation in the body. My CA125 has not gone below 11 since I finished treatment and was NED. It has gone as high as 15. I am on Lynparza. My CA125 was over 4000 when I was diagnosed in 3/2019. I was Stage 3B.

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