CA 125 - range of levels

2

Comments

  • rejoycew
    rejoycew Member Posts: 36
    edited August 2016 #22
    CA125

    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
    MELE73 Member Posts: 2
    CA125 COUNT

    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
    kikz Member Posts: 1,345 Member
    This a very old thread and

    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
    Andrea123 Member Posts: 8
    About the CA125

    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
    Andrea123 Member Posts: 8
    edited January 2017 #26

    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

     

    Doctor can only answer that question

    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.

     

  • Andrea123
    Andrea123 Member Posts: 8
    edited January 2017 #27

    Tina....a total bowel
    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

    PET

    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
    Andrea123 Member Posts: 8
    edited January 2017 #28
    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

    Initial CA125

    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. 

     

  • Andrea123
    Andrea123 Member Posts: 8
    edited January 2017 #29
    Belly Bloat

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

    Frustrating to say the least.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Andrea, this is an old thread

    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
    Amiya Member Posts: 2
    CA 125 level

    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
    LorettaMarshall Member Posts: 662 Member
    edited March 2017 #32
    Amiya ~ See my answer to you at link listed below

    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
    Bluerose11765 Member Posts: 1
    edited March 2017 #33
    Mine was at 8800. It then

    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
    sandy70 Member Posts: 1
    CA 125 Levels

    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
    MaryVig Member Posts: 37
    Diagnosis vs week 4 chemo CA 125

    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
    LorettaMarshall Member Posts: 662 Member
    Mary~CA-125 Count doesn't have 2 B N high 100s 4 U 2 B concerned

    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

  • paddison
    paddison Member Posts: 8 Member
    edited September 2017 #37
    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?

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    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

     

    Sep 24, 2016 - 8:50 pm

    In the spirit of our departed friend, Alexandra....oh, how I miss her humor and wisdom!...a little competition.

    Can anyone top a CA125 of 18,300 ?”

            

     

    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 Surprised 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

  • deltapam
    deltapam Member Posts: 1
    deltapam

    Oh Lord, I was diagnsed with Stage 4 OC August of 2015.  Had chemo, then debulking surgery, followed by 3 more monthes of taxol and carboplatin.  I am 63 years old and trying to be optimistic as I go into my 3 month cat scan, CA 125, and dr checkup.  But it is extremely difficult for me toh andle the stress of it all-the fear of a recurrence gnaws at me every single day. Please pass on any advice. 

     

     

     

     

  • Noddy1
    Noddy1 Member Posts: 1
    edited September 2017 #40
    Stage 2 ovarian cancer

    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. 

  • Sarah6rh
    Sarah6rh Member Posts: 3
    Hi!

    My mum is in a very similar situation to you, so i was just interested in how your Cat Scan went and what your doctor told you about in correlation to having such a high CA125 marker compared to your last scan? Thank you & sending you lots of positive energy, Sarah (Tenerife)