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What was your Ca-125 by the end of chemo?

zsazsa1
Posts: 314
Joined: Oct 2018

I'm about to have round 6 of carbo/taxol/herceptin next week.  My Ca-125 was I think in the single digits a few years ago, was about 35 at the time of diagnosis with UPSC/clear cell stage Ia with isolated cells in a sentinel node, or a IIIc1 if they read that node as positive.  It went up further after surgery in early October, because of post-op inflammation.  It's steadily declined since then.  Now, 4.5 months after surgery, and after 5 rounds of chemo, it's 12.  I don't know if it's still that high because of there being cancer still present, or because of lingering post-op inflammation, or if that's a normal level.  I am pretty sure that it's a valid marker for me, because it was low before I had the cancer.  I have read that in those who have elevated Ca-125 at time of diagnosis, 35 is right about the borderline - above that is associated with Stage III or higher.

Anyone remember when their Ca-125 went back down into the single digits, if at all, and if that was a likely relevant prognostic indicator for them?  Is it just too early for my Ca-125 to have gone down into the single digits?

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

I hope that's not high! Mine was 17.3 pre-op, 64 2 weeks post op (shouldn't have been checked then IMO), 16.9 after 1 chemo, 15.3 after second. Since then it varies between 9.1 and 12.0 (I finished chemo 4/3/18, last CA125 on 1/9/19).

pinky104
Posts: 574
Joined: Feb 2013

I had a 7 year remission after my first chemo in 2010.  After chemo, my number was in the 8's, then 7's, and maybe once or twice in the 6's before it jumped back up to 9 something in 2016 then 14 something in early 2017, then 129 something two weeks after my surgery for my recurrence in the spring of 2017.  It's been running in the 14's or 15's this past year, and my last CA-125 was 21 something with the recurrence I am currently having.  I think the fact that it never went down in 2017 to where it went back in 2010 should have been a clue to me that it was still hiding out in there somewhere, and it was going to rear its ugly head again.  My GYN/onc, however, told me he thought it might be gone forever, and that was just a few months ago. Boy, was he wrong. 

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

My CA125 wasn't checked before surgery. After surgery, whenever it was first checked it was 18 and has steadily gone down. It is now usually between 6 and 8. I am almost 2 years out from surgery. Surgery, chemo, external radiation. UPSC 3B with a positive margin.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Mine wasn't checked for the first time until 4 months after surgery and after I'd started chemo. It was 2.6 then. It was checked by my "new" onc last October, which was 8 months post surgery and about a month after chemo ended, and it was 3.

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

For the most part mine has been in the teens.

barnyardgal
Posts: 208
Joined: Oct 2017

Pre op mine was 12. I was 3a so not very accurate for me. In July it was 6, and has been 6 or 7 since then. Since that measure doesn't seem to be accurate for me, my doctor wants me to do a PET scan every October for a few years, just to make sure.

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

Mine was 17 just before surgery, and 9.9 one month after surgery pre-chemo. I have not been tested since then or after chemo. I was 1a UPSC with LVSI. I am NED, last chemo October 2018. 

Denise

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1523
Joined: Jun 2015

Mine has never been in the single digits.  I was at 22 before surgery.  Jumped to the 90s after surgery.  It has been in the high 20s low 30s for the past two years. Not a good marker for me.

I almost wish they wouln't test it. 

It is my understanding that anything under 35 is considered "normal". For whatever normal means these days!

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1337
Joined: Oct 2015

Mine was 14 before surgery, 11 after, 14 three months later and still 14 six months later. After that, they stopped doing it since they said it wasn't an indicator for me. I had UPSC, Stage II (as far as they could tell since they didn't take any lymph nodes).

Love,

Eldri

SF73
Posts: 257
Joined: Oct 2017

My CA125 was 227 at the first chemo (three weeks after the surgery) no idea how high it was before that time. By the last chemo it was 14 which made me upset because, as an overachiever, I wanted to get to single digits because I read somewhere that those who achieve single digit have better prognosis. It has been one year since last chemo. My CA125 fluctuated between 9 and 15 in the last year. For a while I was getting a CA125 test every month/ 3 weeks since nothing else was calming me. I guess my baseline is in double digits. By the way in the last check up, my oncologist did not mention the CA125. So I brought it up how it stayed the same in the last 3 months. She was not impressed. She said for uterine cancer she honestly does not care one way or the other. I hate that she took that security blanket away. I think she was having a bad day because both my husband and I left the office feeling worse than we went in. And when I think about it, there is really no need for us to feel this way. My visit was on Feb 8th and I am only now recovering from it. I wish the oncologists knew how much of our mental well being depend on what we hear when we visit them. 

evolo58
Posts: 293
Joined: Dec 2017

Got real close, but never was. I think the lowest was 11 or 12. It then went up slightly to 17. Then it shot up to 770 four months later because of the trash can fire in my lower right quadrant ... four months after my last CT said I had a possible tiny patch of cancer there, and the onco decided to do a watch and wait.

The doctor I had at the time (as well as my new medical oncologist) and nurses both told me to NOT panic that the number was so high. Apparently, many doctors look at trends, rather than exact numbers, because it apparently doesn't take much to affect a CA-125 result. Well, considering I was 127 at first-line, I think many people would be a bit concerned if it skyrocketed that high at a progression! I was picturing a pack of marauding squatters smashing stuff in my body.

Out of the 770, 260 seemed to NOT be directly related to cancer, but from some sort of IBS or diverticular issues. I went down to 510 at the first infusion, and had no treatment at all for the six weeks between the last CT scan with the 770 and the first infusion. While I was relieved to see the number drop by a third all by itself, 510 is still pretty darn high. It's great being partly right ... means that I'm partly not right, either!

This test just seems to have a high percentage of inaccuracy. Yet, other than imaging tests, it's the best we have. Terrific.

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

After the 6 cycles of chemo mine  dropped to 8 after being in the 50's. One year later it is up to 75...yep disease has progressed but hoping treatment will knock it down. I think for me it is a reliable indicator of active disease but everyone is unique and I think the numbers are unique to each of us. At my facility anything under 35 is considered normal. Hope that helps. xo 

candy546
Posts: 10
Joined: Feb 2019

I'm not sure that the CA125 is a good indicator for whether one has cancer or not or whether its reliable at all.  I trust the Pet/CT Scan more.  My CA-125 was at less than 2 at my first chemo treatment and is now at 3 at my second treatment.  The nurse says she's seen CA-125's in the thousands which is a frightening thought.  I really don't get it.

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

My numbers are sky-high! I was over 600 when finally diagnosed in Oct 2016 with Stage III2C. After hysterectomy, chemo and radiation, it got down to 17, but then, at 6-month checkup was 117. It's gone pretty much up since then, though fluctuated during two clinical trials. Believe it or not, I was at 4,000+ before starting Doxil and Carboplatin in Dec of 2018. It's come down to 1,100 now. Can you believe I'm happy with that number? I guess I'm the outlier; somebody has to be the highest ever heard of! My doc is mostly happy because I feel pretty good, though not quite perfect. But I'm tolerating the chemo well and keep active. 

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

Hi Kat! So glad to see you and hear that you're feeling relatively well. Keep up the good work! Best wishes, B

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

Hanging in there and determined...

SF73
Posts: 257
Joined: Oct 2017

Wishing you all the best KatnHat. Love your profile picture!

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