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CA 125 - range of levels

madona
Posts: 3
Joined: Dec 2007

Hi I am new . A stage 4 OC and with 548 CA125 level after first chemo cycle with carbo/taxol .
I am trying to find the highest levels known at the start of chemo .
can someone please give me some pointer .
Thanks a lot .

floridajo
Posts: 485
Joined: Sep 2006

Madona
Welcome to the site,sorry we have to meet under these conditions. Please don't put alot of stock in the ca-125 #. it just means that your disease puts out alot of proteins that the test picks up on. I know of a girl with a ca-125 of 4050,and she was staged a 1c. For me my cancer doesn't put out alot of proteins, but I'm having a recurrence right now with a ca-125 of 54. It's a tricky little test to understand, but the numbers sometimes have very little to do with the volume of disease present. Good luck...and again welcome..(((hugz)))...Joanne

curlee8661's picture
curlee8661
Posts: 57
Joined: May 2007

Hi Madona,
Welcome! I'm sorry you have the need to be here, but this is a great place to get answers and find support. My oncologist seemed concerned with my numbers not dropping much after the first chemo, but after the second treatment there was a BIG change. I asked him some questions based on my initial numbers, and he ended up telling me that he has seen them go above 5,000. But, like Joanne said, these numbers are just a guesstimate at best. They do NOT necessarily reflect the amount of cancer remaining. Try not to worry too much! Just focus on getting through treatment for now!

(((HUGS)))
~Marianna~

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

Welcome to this site. It has helped me in everyway. I am Stage IV also, diagnosed March 2, 2007. I had 3 liver tumors which put me in the 4th stage. Am considered tumor free and in remission now after 8 chemos, debulking surgery and radio freq. ablation of the liver tumors. I started with a CA-125 of 2988 and am now at a 5 but my oncologist thinks it is a good indicator for my cancer cells, but not everyone's. E mail me if you have any questions. Saundra

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kris43
Posts: 277
Joined: Sep 2007

I am Stage IIIc, I was 1632 at the time of surgery and as of 2 weeks ago was 6.9

Your CA 125 is your "marker" -you watch it go down with each treatment cycle and the norms are from 0-35 or 0-21,depending on what your doctor uses.

Best of luck with your treatments and keep posting. You'll get a lot of support here. Take care.
Kris

Angelasmom2
Posts: 146
Joined: Jul 2010

My daughter has 3c ovarian cancer and started out with almost 6000 CA 125 count. After two rounds of chemo, her CA 125 showed 167.

leesag's picture
leesag
Posts: 626
Joined: Jan 2010

My CA125 was 9824 at diagnosis and is currently 12 4 months after chemo.

;)

Angelasmom2
Posts: 146
Joined: Jul 2010

Love the news!

catcan
Posts: 122
Joined: Feb 2010

I was and am still stage 4 OC diagnosed 4/09. My CA125 was 2300 and now at 1150 after 3 different chemos. I'm getting ready to finish Topotekan and will be going to Gemcarz (sp)Hanging in there. Don't rely much on the CA125 stick to the cat scan

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I think it must be a good marker for me. Before surgery, it was 4,000 and my nadir, about 60 days after I finished the Carbo/Taxol regimen, was 3.8

It has stayed pretty stable for the last 3 months, just below 7. But I am still getting Taxol (monthly) as maintenance, so that may be keeping the CA125 down.

I am still getting monthly blood draws but after I finish the maintenance, my doctor's protocol is every 3 months. I am going to ask him to leave me on monthly checks, and maybe he will compromise at every 60 days.

Carlene

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am the other way round. My CT scan showed little change from when I finished treatment and my CA125 was 34 at it's lowest. But now my Current CA125 is 1,280.

Tina

vj1's picture
vj1
Posts: 151
Joined: Jun 2010

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

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Unfortunately, the CA125 count has nothing to do with staging. Or maybe I should say fortunately, since mine was 4,000.

The CA125 is your body's response to an enzyme produced by the Cancer. Some people react very strongly and some don't. Also, infections, bowel obstructions, etc can cause a jump in the numbers.

Mine has bounced, roughly, between 4 and 7 for the last 7 months.

Carlene

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I was interested to read your views on CA125. Not sure if you've read any of my posts but my recent CA 125 has jumped from 71 to 1,280 in 2 months. However my CT scan looks relatively unchanged??? I am having bloating which I now realise is wind as my bowle movements are more frequent and smaller amounts are passed. My onc was unable to tell me exactly why the jump was so high yet the scan did not match and has put me on Caelyx (which I beleive is Doxil)

Do you think I may have a partial bowel obstruction? I am going mad here - it is very difficult to get hold of my onc as they are so busy. If so would that resolve itself once chemo starts? I know I should speak to my onc but I left a message last week and still not heard anything.

Thanks Tina x

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Tina....a total bowel obstruction (and I speak from experience here) is very painful; you would definitely know if you had one.

I really think a BO would have shown up on your CT. Mine was diagnosed via a plain old xray.

Will your doctors consider doing a PET scan? They might get something to light up on a PET scan that the CT scan is just not seeing.

I think your doctor has done the right thing by putting you back on chemo. That's very proactive of him, considering that your CT scan was clear. He is evidently thinking that the Cancer is active again, but very early and just not showing up yet on the scan.

Was 71 your nadir (lowest) CA125?

Carlene

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hi Carlene

I have quite alot of gas and bloating. The noises that the gas make are quite loud and bubbly and when I need to use the bathroom I have to go quick. But I don't always pass alot & I may have to go 2 or 3 times in quick succession & then I'm alright. This often happens shortly after I've eaten.

After chemo ended my CA125 went like this: 70, 34, 71, 1,280 - present reading.

Thanks Carlene

Andrea123
Posts: 8
Joined: Oct 2016

I can't for remember what a PET scan is and does. Sorry to sound ignorant. I have had all kinds of scans but not that one.

God Bless

Andrea123
Posts: 8
Joined: Oct 2016

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. 

 

lillin20
Posts: 8
Joined: Mar 2010

my grandma's initial levels were 458

mukesh kumar
Posts: 1
Joined: Aug 2016

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

 

Andrea123
Posts: 8
Joined: Oct 2016

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.

 

Jodisgoing180
Posts: 98
Joined: Feb 2016

My CA-125 was 308 when diagnosed, stage 4.  I just finished treatment 8 weeks ago and it never went below 90.  I am scheduled for a PET Scan to rule out anything that chemo missed.

I don't have any symptoms of cancer (at least I don't think I do), my bowels are normal, no painful gas, normal pee.  The only thing that really concerns me is that I had a pleural effusion, and there is pressure where the injection site was for my thoracentesis.  Other than that, I have no issues with breathing, I am running C25K, and have really good energy levels (for having been through 18 rounds of chemo-- weekly).

azgrandma's picture
azgrandma
Posts: 596
Joined: Feb 2010

mine was 4500

rejoycew
Posts: 18
Joined: Mar 2016

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

MELE73
Posts: 2
Joined: Nov 2016

HI I'M MELE   MARCH 2015 MY COUNT WAS 59870  STAGE 4 OVARIAN CANCER     NOW 43 TREATMENT AND MAJOR SURGERY  MY COUNT IS 40  THEY MISSED A SPOT IN SURGERY AND DON'T WANT TO GO BACK   IT'S REAK SMALL BUT REQUIRES TREATMENTS

kikz's picture
kikz
Posts: 1343
Joined: Jun 2010

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

Andrea123
Posts: 8
Joined: Oct 2016

I wondered if anyone has ever had a doctor lessen their treatment if their numbers are looking good. My CA125 is at an 8 now. And I have two more chemos to go. I wondered if anyone has had the doctor say Oh ok. We are where we are supposed to be -you are done. (I realize I am probably dreaming right now) But chemo really hurts my legs and I have nausea. Can't do much of anything but work on getting through my side effects. Oh well I can only hope. Or just be glad that the treatments are almost over.

 

Andrea123
Posts: 8
Joined: Oct 2016

If you have had belly bloat during chemo--after it is done will it go down?

Frustrating to say the least.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1653
Joined: Mar 2013

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.

Amiya
Posts: 2
Joined: Mar 2017

Hi......My CA 125 is 135....and i am diagnosed with endometriotic cyst in my left overy just 3 days back....is this much high level is just due to cyst or there may be chances of OC....???plz suggest me......

LorettaMarshall's picture
LorettaMarshall
Posts: 369
Joined: Sep 2012

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

 

Bluerose11765
Posts: 1
Joined: Mar 2017

Mine was at 8800. It then dropped to the 200 range During chemo.   I was diagnosed in 2012.  After the chemo my ca125 dropped down to 17 25 32.  recently it was gone up and down between 53 to (right now) 92.  I'm in remission but have a maintenance every 3 weeks of avastin. That treatment varies due to protein level. If too high I don't get treatments- but it's the avastin that causes the high protein levels.  My oncologist said my scans are good and even if the levels are above 35, he won't be too concerned unless it goes over 150

  

sandy70's picture
sandy70
Posts: 1
Joined: Mar 2017

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.

MaryVig
Posts: 35
Joined: Feb 2017

when I was diagnosed with OCCC (clear cell) my CA125 was 9. Before starting round 2 (week4) chemo, by CA125 increased to 130. I was a bit freaked by the increase, but Oncologist seems to think while on chemo it will vasilat. He Sid if it jumped unto the upper hundreds or thousands than he would order a CT. Anyone else with this situation?

my Dr is in a system that uses electronic charting so I see all of the test results, and in this case I saw the results before the Dr apt which was day after the blood draw.

LorettaMarshall's picture
LorettaMarshall
Posts: 369
Joined: Sep 2012

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. Smile

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 3rd 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 4th 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.  Sealed Yell He’s not paying the bill is he?

Just saying!

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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