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Any survivors with Nadir CA125 in two digits?

SF73
Posts: 277
Joined: Oct 2017

Hello all,

Hope everyone is doing well. Happy Valentine's Day! Yesterday I had my last chemo treatment (Carbo/Taxol) with mixed feelings. On one hand I do feel accomplished.  I am grateful that I was able to tolerate the treatment well. After the 3rd infusion CT Scan showed no evidence of the disease anywhere. The only concern raised by the CT Scan was a granulation tissue (more likely) or a remnant ovary syndrome (less likely) close to where my right ovary used to be (My right ovary had a 7 cm mass attached to it.) But both my original onc gyn and the medical oncologist from UCSF are not concerned. I took a bunch of blood tests to see if there is any remaining ovary functionality and all my hormones are very low. I was given the option to take a PET scan but did not want to expose myself to unnecessary radiation. The oncologist at UCSF seems to think MRI would be as informative anyways. I should know more about this soon. 

The only other piece of info about whether things are moving in the right direction is the CA125 measurements. Like most of you I don't have a baseline value. I don't know what my normal is prior to the cancer diagnosis. I don't even know what the value was after the diagnosis and prior to the surgery because the surgeon did not suspect it would be a good marker for me. (Not sure why they don't just order it and then decide whether or not it is a good marker for the patient) 

My CA125 numbers are (all from prior to a chemo session): 224, 74.9, 42.6, 18.5, 16.9, and 15. As you can see I plateaued after the third chemo session. I noticed that many of the people on the ovarian cancer board and here achieved a single digit CA125 at the end of their treatment. There are some papers that use nadir CA125 levels to predict survival though it does not seem like there is consensus on what the threshold should be. I was wondering if we have any survivors who ended chemotherapy with a CA125 level greater than say 10 and still enjoyed long periods of remission. 

Thanks!

takingcontrol58
Posts: 244
Joined: Jan 2016

SF73,
My CA125 levels have never been lower than 12. They average 12 -14. 

I went into almost complete remission in March 2015 after 3 chemo sessions and one month
on metformin (from 34cm to 4cm of tumors).
My CA125 had dropped from 280 to 20. In June, after my 6th chemo session, I was down to 2cm of tumors
and my CA125 was 17. My last chemotherapy was the end of May 2015.

I was completely cancer free in total remission two months later, in August. My CA125 was down to 13.
I have remained in total remission every since. 

CA125 levels can move due to many things. I had fibroids for almost 20 years before I was diagnosed
with cancer. I remember my CA125 was higher when I had fibroids than it is today.

I also get my HE4 levels tested every 3 months along with the CA125.  It is a better marker for recurrence.

Looking at trends over time is important so you know what levels are normal for you. 

Takingcontrol58

 

 

 

SF73
Posts: 277
Joined: Oct 2017

I am so glad that I asked this question. You never fail to give some hope, takingcontrol58 :) Thank you, thank you for your response. I remember the article you have shared about HE4. I asked both oncologists and shared with them the articles suggesting the use of HE4 together with CA125 increases the specifity and sensitivity of testings. They were both not familiar with the HE4 test and refused to order:(

Wannabeatit
Posts: 97
Joined: Dec 2017

My ca125 was 22 before my hysterectomy and 29 after. I will be getting another test on Friday just before my 3rd session. Hope it doesn’t go up anymore. I thought the operation would bring it down... These tests can be a little inaccurate 

SF73
Posts: 277
Joined: Oct 2017

Surgery causes inflammation and that must be the reason for the increase in CA125. I wouldn't worry too much about it. Good luck with your test on Friday!

evolo58
Posts: 293
Joined: Dec 2017

I know many sites recommend waiting at least three weeks because of that reason ... surgical trauma can affect the results. I'm almost four weeks out.

I'm going back for my last three chemos starting tomorrow (for those who are new, I'm on neoadjuvant therapy ... three chemos before, surgery, three chemos after), and just got my fourth CA-125 test done today. To say I'm nervous is an understatment. But I figure as long as it's within normal range, the gyno onco isn't worried about it, and ... BIG and ... after the sessions are done, the number is down (so that would exclude surgical trauma), I'm good. Nevertheless, I was 13 before the surgery, and am VERY nervous what the number is now. I probably will always be whenever I have this test. I guess I need to get used to it ... part of the package.

(CA-125 results before ... 121.6 baseline, 43.7 post 1st-Chemo, 19.2. post-second, 13.0 post-third.)

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

Regarding the post op effect on Ca 125. Mine was 16.3 pre-op (with stage 3a involving almost the whole uterus, and met to left ovary), so not a good marker for me. For some reason, she ordered again post op, and it was 64 (15  days post op). Even though I knew surgery could increase it - a little stressful! After chemo 1, 2, and 3, it was 16.9, 15.3, and 9.7. I think it drops with menopause (surgically induced in this case).

MAbound
Posts: 891
Joined: Jun 2016

Congratulations on finishing chemo!  Ding! Ding! Ding! I know! I know! I had mixed emotions about celebrating then, too, especially when you still have to get through the side effects of the latest infusion, but it's still a big deal so....Congratulations!

SF73
Posts: 277
Joined: Oct 2017

You are so sweet, MAbound. Thank you! It is so wonderful to have you wonderful ladies who can decipher all the mixed emotions we experience during this tough journey. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

SF73, Congrats on finishing chemo. Major Milestone!!! yippee....

My CA125 was 22 PRIOR to my surgery. It dropped down to 13 for a short while during chemo.  But mostly, mine stays around the 25 to 28 these days and I'm 2 years post treatment.  My doctor is not concerned at all with my levels.  They say anything under 35 is considered normal.  

Hope this helps you feel better.

Love and Hugs,

Cindi

SF73
Posts: 277
Joined: Oct 2017

This does make me feel better. Thank you so much for sharing, Cindi. And congrats to you for being 2 years post treatment. Look forward to getting that major milestone :)

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

My first CA125 was in the 600's and was in the low 400's when I had my hysterectomy in Nov 2016.

It went down to 12.1 after chemo (late April 2017) but started to climb in to the 20's over the summer--but we knew I had two lymph glands in my neck that look like they had cancer and it turns out they did. After radiation to my neck my level went back down to 13.3

I have my next CA125 in a month...very curious to see how it is...

Congrats on finishing chemo...it's all a rollercoaster...

SF73
Posts: 277
Joined: Oct 2017

Thanks, ckdgedmom. I guess we all have different baselines. 

pinky104
Posts: 574
Joined: Feb 2013

My CA-125 was 92 when I was first diagnosed, yet I had the highest stage of UPSC possible, IVb.  After surgery and chemo, I was in the 7's and then the 6's for several years.  Then one year it went up into the 9's, but I was assured I was fine.  Eight months later, it had gone up to 14.2.  My oncologist said it was fine again, in normal range, but I was really worried then.  A couple of months after that, it went up to 129.  Two weeks before that reading, I'd had to have emergency surgery as i'd had a hemoccult test which found rectal bleeding.  A colonoscopy found a mass wrapped around my ascending colon which was also in my peritoneum and paracolic gutter (the last two places were found by a CT scan and a PET scan before surgery).  My next reading was down to 35, and the most recent one was 9 something.  I'm due to find out tomorrow if it has changed from that reading.  I'm now almost 8 years out from my first sugery. By the way, I'd had pain in 2014 and a tiny mass was found then, but after 4 scans during the course of a year, my GYN/onc. said he didn't know what it was, and he said it was too small to find to biopsy, but it wasn't cancer as it hadn't grown. But then 3 years later, it grew like crazy in just a couple of months.  So I guess what it comes down to is that those two digit numbers can mean just about anything. 

pinky104
Posts: 574
Joined: Feb 2013

My CA-125 was 9.1 today, so I was happy it hadn't gone up.  I think it was down a few tenths of a point.

SF73
Posts: 277
Joined: Oct 2017

That's an awesome test result! Congrats on your continued remission, Pinky!

evolo58
Posts: 293
Joined: Dec 2017

I didn't see this. Congrats! May it stay around there for a very, very long time.

And SF73, congrats on finishing chemo as well, albeit belated congrats. I'm saying to my family that a couple of weeks later, one should REALLY celebrate ... go somewhere nice, dance in the streets, etc. Some infusion centers actually make a bit of a big deal of it after chemo or radiology sessions ... a balloon, certificate or a card. After the hell these treatments put us through, I think there IS cause to celebrate! Break out the bubbly or other beverage of your choice! And may you also stay NED. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I was thrilled to finish the 6 rounds of Carboplatin/Taxol but also felt frightened that my safety net came to an end. I didn’t have a CA-125 assay test done until after my hysterectomy in Oct 2013. Since then I’ve had 13 CA-125 tests and my numbers ranged from 8 to 12 with 10 being the most frequent result. My last test in Oct 2017 was a 9. Not sure if this test is a good marker for me or not. I remain NED from stage 3a UPSC. Radiation was not recommended for me.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I was thrilled to finish the 6 rounds of Carboplatin/Taxol but also felt frightened that my safety net came to an end. I didn’t have a CA-125 assay test done until after my hysterectomy in Oct 2013. Since then I’ve had 13 CA-125 tests and my numbers ranged from 8 to 12 with 10 being the most frequent result. My last test in Oct 2017 was a 9. Not sure if this test is a good marker for me or not. I remain NED from stage 3a UPSC. Radiation was not recommended for me.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2615
Joined: Mar 2013

I know exactly what you mean by "safety net".  I call it jumping off a cliff.  The 3 month follow ups gave me a new sense of a 'safety net' only to be thrown off again when I went to every 6 months and then, again, just annual. 

As I am hearing from some of you, I don't know if it is a good marker for me or not, but I still hang a lot on the number when I get the test.

 

SF73
Posts: 277
Joined: Oct 2017

Thanks, Abby. Those are some awesome CA125 numbers. Wishing you continued success in remaining NED! 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

My CA-125 results were 14.4 after my positive biopsy but prior to surgery, then 11.3, 12.2 and 14.4 each month after.  The last one taken, I also had a UTI.  After that my oncologist/gynecologist discontinued them as being unreliable as an indicator for me.  I've had No Evidence of Disease since my surgery back in September of 2015 (knock on wood).

Love,

Eldri

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