CA 125 - range of levels

Wow what flucuations of the CA125.  I was told not to depend to much on the numbers but----   I started out at 1500 in Sept 2015 had 2 carbo/taxil treatments, emergency surgery for blocked small bowel, 12/22 resumed chemo with CA125 at 138.3, last chemo 2/2 with CA125 78.8. Lowest was 2/29. Never got down to the normal range below 35. Had a CScan which showed tumors on liver and lower abdomen.  Started on Gemzar in June.  It continued to rise is now at 151.2.  Oncologist recommends changing to Doxil. I don't like the side effects but we gotta do what we gotta do.  Hopefully this will work.  My prognosis is not a cure just keeping the evil stuff under control and be happy with good quality of life.  Blessings on all of you on this journey

This a very old thread and many of these lovely women are no longer with us.  You should try a new post so you can get a response from current members.  Unfortunately this board is not as active as it was when I joined in 2010.  It was extremely helpful to me.  I wish you well.  Yesterday I had my first infusion for my sixth go round with chemo.

Karen

mukesh kumar said:

hi.im new.my mom is

hi.im new.my mom is diagnoised with OC and her CA125 is 17000 after 20 chemos.is there any problem further.i want to know that can it be cured..anythings to worry..thank u

 

There are so many variables in that question--you have to get with the doctors or his staff to find out more information. I hope she does well. I will put you  and your mom in my prayers.

vj1 said:

CA 125
This is a mystery. I am reading how many of you had very high CA125 at dx. I was dx with stage 3C. My ca125 was 111 (yes I have checked and rechecked the reports) Since chemo which finished last Nov I am holding at 5.2. It drops a bit with each 3 month draw. Anyone have any insight on this? I was told it would go up and down a bit even when NED.
Some of these numbers I am seeing are staggering. I keep dreaming that my initial count was because I did not have stage 3. Some dream huh? There are days I just want to throw the signals, etc out the window.

V

Initially I had 100.25 at the first chemo. But after surgery I think it was 300...don't remember that one. But now it is 8 after 4 chemos. Two more to go.  The only thing i can tell you is that the scans and the CA125 all work together on how a doctor looks at your overall health after the treatments.  I was stage 2. It is all very confusing. The thing to do is to research it a little more. And from what I have heard ca125 don't always mean cancer even  if it is high. A nurse told me that even inflammation can make it go up. It went up after my surgery I guess because of the stress on my body.  With me I am just glad that the numbers keep going down. I don't understand the elevated numbers either. A nurse can explain it to you. 

Andrea, this is an old thread as Karen pointed out a few posts back, but when someone posts it pops it up to the top.  

I have not heard of any of the women having their chemo stopped early because their CA125 has come down they have done it because they have had such a dramatic psychologic/physiologic reaction that was causing issues they decided to discontinue it.  I think everyone has experienced the drop in number during  chemo, so you probably have the two to go.  There are good meds to help with nausea out there though so be sure to ask about those - or increasing those as needed.  Two to go and we are all cheering you on.

Hi there –

Since you have posted in 2 different places, I thought I would just combine your two postings and answer you on this separate link.  - http://csn.cancer.org/node/308316

Loretta

So sorry we are communicating under these circumstances.  I was diagnosed on 12/21/16 with Stage IV.  My DR. suggested we go Chemo first then assess for surgery.  At the start of chemo my CA125 was at 5817.  Last week it was low 400's.  I still have 3 rounds of Chemo to go.  I really don't put too much faith in the counts, but that''s based on the information I've found on the internet.  Praying for us all with this dreaded disease.

Hello again Mary ~

If I were you, I would want a CT now.  Anything 35 and below is considered normal.  And your count doesn’t have to reach the high hundreds or thousands before there is reason to sound the alarm.  Actually, sometimes people go through treatments and the cancer does not respond.  For that reason, my onc always does a CT in the mid of the period of my 6-week regimens to see if the cancer is responding.  Thankfully, the Carbo/Taxol treatment has worked well for me.

However, some here do better on other regimens.  We’re all different.  And while some may have a CA-125 count in the “thousands”, in my case, mine has always been in the lower 100s but am still Stage IV and still have cancer in lots of places.  The aim for me is to have as long a period of “progression free survival” (PFS) as possible.  And so far, even though the treatments have not been pleasant, they have been productive and resulted in lowering my count down to a “new low.” 

I’ve just finished a series (Jan. ’17) and my count is now 32.  It was something like 324 when I started my last regimen in October of 2016.  And each month the count was lower in the range of 30 points or more.  Today it is 32. 

However, in reading other stories here, sometimes a patient has been treated with a “platin-based chemo”, but did not respond to it.  They were found to be “platin resistant” for instance, and responded better to some other kind of chemo.

That is a reason for a CT scan to be performed.  If I were you, I would not wait until it got to be in the high hundreds or thousands before I had the benefit of a CT or a PET/CT scan. 

I am on a Coumadin regimen that requires a weekly INR check to ascertain that my blood level is where it should be—between a 2 & a 3!  So I’m at the oncology lab once weekly.  Every 3^rd week, I get a complete blood count (CBC) and a CA-125 count.  Then that information is on file when I go in on the 4^th week for my monthly consultation.  This way he keeps up with my tumor markers.  If it is rising “consistently” he orders a PET/CT or a CT, depending on my symptoms.

Now “vacillation” for me would mean varying by just a few points one way or another.  However, I would be concerned about a consistent increase of 10 or more each time I was checked.  My oncologist always says, “I’m counting on you to tell me how you feel.  Your input is valuable to me!” 

Sure hope you don’t have an oncologist who operates under the “sit-down & shut-up—I’m the doc here” plan.    He’s not paying the bill is he?

Just saying!

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

paddison said:

I have been reading these

I have been reading these posts and I haven't seen anyone with CA125 numbers as high as mine.  On July 25,2016, I was diagnosed with stage 3-4 ovarian cancer.  My CA125 was 16,000.  I did 3 rounds of taxil/carbo, then had a total hysterectomy including my omentum and even my appendix.  Then 3 more rounds of chemo.  I finished on January 25, 2017.  My CA125 was down to 12 in May.  The beginning of August I had a CA125 done.  It was 295.  I had another test and a CT scan 4 days later.  The number was 460, but nothing showed on the scan.  

Last Tuesday I had another CA125 done....it is 2645.  To me, the only thing that would make the number so high is a recurrance of the cancer.  I am having a PET scan on Saturday.  I am very anxious about this.  I try not to think about it, but it is hard.  

Has anyone had their numbers go this high?

Paddison~Reference "Wholfmeister"-She had CA-125 of 18,300!

Hello Paddison – It’s Loretta again. 

Today you’re having cataract surgery, so you probably won’t be checking this site.  I had cataract surgery a year ago.  It was short and painless.  But keeping track of “what drop to put in when” was more difficult.  However, now in the last 4 months I have developed “floaters” in my right eye.  At first I was swatting at what I thought was a small gnat buzzing by, but then I realized it was something in my line of vision that really “wasn’t there.”  A trip to my ophthalmologist resulted in this diagnosis:  “You don’t have a detached retina and that is what would be troubling.  Your brain will get used to the floaters.  So keep your eyes moistened with an eye refresher.  We’ll recheck you again in 4 months just to keep a check on you!”

So hope all goes well for you and doesn’t result in any floaters.  However, I’ve spoken to more than one person who has had cataract surgery, and they tell me that they have experienced the “floater” problem too.  Well you know my answer to coping with those kind of problems, “WELL IT AIN’T CANCER!”  Every other problem has to “get in line” beneath the big “C”!

Now about your alarm at seeing a high CA-125 count.   

Here is a link that will tell you that more than one person has had CA-125 numbers much higher than yours—not that it is any comfort to you.  We don’t like numbers that exceed “35” now do we?  But I was flabbergasted when “Wholfmeister” wrote that her numbers were now up to 18,300.  Incidentally, she was on Doxil at one time too.

_____________________________________________ 

https://csn.cancer.org/node/305534

A Little Gallows Humor

On August 30, 2014, she had started her first dose of Doxil.  Fast forward to last September of 2016.  September 24. 2016 her CA-125 count was 18,300.  Obviously DOXIL isn’t what it’s all “cracked up to be”.   

_____________________________________________________ 

https://csn.cancer.org/node/306470

November 12, 2016 -- She writes that she is checking into hospice.

_____________________________________________________ 

 She was last online on November 17, 2016.  Now I haven’t been on this site as long as some others, so several ladies were in touch with “Wholfmeister” after she signed on December 11, 2012.  So they have had more conversations with her and are better acquainted with her ordeal than do I.  But to my recollection, I’ve not seen another person with such a high count as "Wholfmeister" although there are others with a much higher count than you are now experiencing.  But as for DOXIL, based on what I’ve read here, when my oncologist suggested to me again last Thursday that I could “consider” DOXIL, I immediately gasped and said, “Oh no thank you!”

I’d rather go with the devil that I know, Carboplatin and Paclitaxel (Taxol) than the one I don’t know (that being Doxil.)  So far I haven’t read any rave reviews!

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV since Nov. 2012

The one thing you ask yourself after the inital shock.

How long will I have? Im 56, required a full hysterectomy.  6 rounds of chemo.

I was hoping stage 2b was bettethan obviously 3 or 4 for survival? Grim conversation but its in my head.