anyone have Ca 125 stop being reliable indicator?

nancygt
nancygt Member Posts: 86
in Uterine/Endometrial Cancer #1
At original diagnosis and 2 subsequent recurrences, my CA 125 seemed to be reliable indicator and early warning system - doubled or tripled before anything even showed up on scans. For last three tests had hovered around 30-34 after grueling six months of Cisplatin and Adriamycin had shrunk exisiting tumors 30% .So when I got good CA 125 reading, I got positively giddy with the thought of living 3 months with cancer in the background. But lo and behold when I went in to get CT scan results the tumors in my lower lobes of my lungs are growing and there are new tumors in upper lobes. My doc was also surprised,took another CA 125 two days ago and it was still 35. It can sound so petty but I got really angry at my body, God, science, whoever that I had gotten so excited about a 3 month reprieve (I know I can't be cured) and then got dashed down. I am wandering around like one of those cows in the slaughterhouse they hit in the head with a rubber mallet.I do know not all women get a change in CA 125 but just wondered if anyone else had had it quit rising after 3-4 consistent patterns (actually got down to 9 after first chemo several years and each recurrence has gone up significantly until now).

Comments

  • sleem
    sleem Member Posts: 92
    #2
    CA 125 for Ovarian
    http://www.medicinenet.com/ca_125/page2.htm

    I have had 2 doctors tell me that CA 125 was used for ovarian primarily. My GYN/Onc when asked that question told me yes it was more known for ovarian, but CA 125 was all that was available at this time in her strategies for UPSC.
    This link deals with Ovarian CA 125 and might give some insight. My CA 125 # changed with my doctor's hospital changed the methodology of their CA 125. Mine went up with this change from a 14 to 21. Six months later, my next CA 125 for 21 again. So this is now my new baseline (21 with 35 as cut of for 'nomal') with the new methodology. Had another CA 125 with different methodology with cut off of 21 as normal during this 6 months and my CA 125 was 16. Which was normal. It is hard to figure it all out.

    I tested this link & it did go to this sight.

    I try not to live by the numbers. My CA 125 was 14.5, scans clear, and still I was diagnosed with UPSC. There is some research going on with what does it mean to have a steady rising CA125 that is still in the 'normal range'. You might check that out.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #3
    sleem said:

    CA 125 for Ovarian
    http://www.medicinenet.com/ca_125/page2.htm

    I have had 2 doctors tell me that CA 125 was used for ovarian primarily. My GYN/Onc when asked that question told me yes it was more known for ovarian, but CA 125 was all that was available at this time in her strategies for UPSC.
    This link deals with Ovarian CA 125 and might give some insight. My CA 125 # changed with my doctor's hospital changed the methodology of their CA 125. Mine went up with this change from a 14 to 21. Six months later, my next CA 125 for 21 again. So this is now my new baseline (21 with 35 as cut of for 'nomal') with the new methodology. Had another CA 125 with different methodology with cut off of 21 as normal during this 6 months and my CA 125 was 16. Which was normal. It is hard to figure it all out.

    I tested this link & it did go to this sight.

    I try not to live by the numbers. My CA 125 was 14.5, scans clear, and still I was diagnosed with UPSC. There is some research going on with what does it mean to have a steady rising CA125 that is still in the 'normal range'. You might check that out.

    Ca 125 not such a good marker for me
    Have stage IV b grade III since July 2010. Pre surgery ca 125 was 95, post 85. then after six rounds carbo and taxol and two doxi it hung around 7-8. Was ecstatic till I felt constipation over day which reacted ok to enemas etc. Had PET/CT found 8cm tumor.Blood tests all fine! Had surgery three weeks ago, tumor gone, colon resected. recuperating just started new Chemo, Gemzar Carboplatin. Thursday slept three days straight! Haven't gotten ca 125 back yet.
    So yes Ca 125 not accurate marker for me!
    Now docs say they will up CTs
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #4
    sleem said:

    CA 125 for Ovarian
    http://www.medicinenet.com/ca_125/page2.htm

    I have had 2 doctors tell me that CA 125 was used for ovarian primarily. My GYN/Onc when asked that question told me yes it was more known for ovarian, but CA 125 was all that was available at this time in her strategies for UPSC.
    This link deals with Ovarian CA 125 and might give some insight. My CA 125 # changed with my doctor's hospital changed the methodology of their CA 125. Mine went up with this change from a 14 to 21. Six months later, my next CA 125 for 21 again. So this is now my new baseline (21 with 35 as cut of for 'nomal') with the new methodology. Had another CA 125 with different methodology with cut off of 21 as normal during this 6 months and my CA 125 was 16. Which was normal. It is hard to figure it all out.

    I tested this link & it did go to this sight.

    I try not to live by the numbers. My CA 125 was 14.5, scans clear, and still I was diagnosed with UPSC. There is some research going on with what does it mean to have a steady rising CA125 that is still in the 'normal range'. You might check that out.

    Ca 125 not such a good marker for me
    Have Dx uterine cancer clear undifferentiate stage IV b grade III since July 2010. Pre surgery ca 125 was 95, post 85. then after six rounds carbo and taxol and two doxi it hung around 7-8. Was ecstatic till I felt constipation over day which reacted ok to enemas etc. Had PET/CT found 8cm tumor.Blood tests all fine! Had surgery three weeks ago, tumor gone, colon resected. recuperating just started new Chemo, Gemzar Carboplatin. Thursday slept three days straight! Haven't gotten ca 125 back yet.
    So yes Ca 125 not accurate marker for me!
    Now docs say they will up CTs
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #5
    Sara Zipora said:

    Ca 125 not such a good marker for me
    Have Dx uterine cancer clear undifferentiate stage IV b grade III since July 2010. Pre surgery ca 125 was 95, post 85. then after six rounds carbo and taxol and two doxi it hung around 7-8. Was ecstatic till I felt constipation over day which reacted ok to enemas etc. Had PET/CT found 8cm tumor.Blood tests all fine! Had surgery three weeks ago, tumor gone, colon resected. recuperating just started new Chemo, Gemzar Carboplatin. Thursday slept three days straight! Haven't gotten ca 125 back yet.
    So yes Ca 125 not accurate marker for me!
    Now docs say they will up CTs

    Sara
    You have been through so much. I hope that you continue to recuperate fully from your surgery and that you respond well to the chemo.

    Why CTs (lots of radiation exposure) instead of PET/CTs?

    Mary Ann

Discussion Boards