Do CA125 numbers bounce around?

zoesmom
zoesmom Member Posts: 3
in Ovarian Cancer #1
Was diagnosed a level IIIc in mid-June of this year. After making it through 6 rounds of taxol and cisplatin ip and iv the end of October, I'm just beginning to reach out and ask questions. It was just about asking enough questions to figure out how to survive the operation and chemo and lung drains before. Now I'm looking out to the horizon to ask questions about living. Reading the discussion board tonight I see that a lot of peoples' CA125 numbers seem to remain stable. Mine has already climbed by two points in the two months since finishing chemo. My doctor says it is normal but is it? I keep reading about CA numbers remaining stable.

Comments

  • jadav1956
    jadav1956 Member Posts: 95 Member
    #2
    HI !! I don't know for sure
    HI !! I don't know for sure about your question. I just wanted to say I was diagnosed in April 11'. I also am a 3c. My ca 125 started at about 4800. I had 5 rounds of carbo/taxol. I had to switch to taxotere at the 6th tx. I have had 3 tx with that mix. I am due another chemo this next week on 12/22. It will make 9 total.My platelets were too low this week to have another tx. My numbers are now down to 21 !!! I know the onc wants me to have at least another year of a maintenance chemo, but don't know what that means just yet. I have a ct scheduled for 1/10. Hang in there and ask onc lots of questions . Also keep reading this board as the ladies here are wonderful !!! Jackie
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #3
    jadav1956 said:

    HI !! I don't know for sure
    HI !! I don't know for sure about your question. I just wanted to say I was diagnosed in April 11'. I also am a 3c. My ca 125 started at about 4800. I had 5 rounds of carbo/taxol. I had to switch to taxotere at the 6th tx. I have had 3 tx with that mix. I am due another chemo this next week on 12/22. It will make 9 total.My platelets were too low this week to have another tx. My numbers are now down to 21 !!! I know the onc wants me to have at least another year of a maintenance chemo, but don't know what that means just yet. I have a ct scheduled for 1/10. Hang in there and ask onc lots of questions . Also keep reading this board as the ladies here are wonderful !!! Jackie

    Maintenance chemo
    Jadav: from what I could figure, maintenance chemo is either taxol or taxotere alone. There is a cumulative toxicity with the platinum chemo drugs so those are used for active disease only. Sometimes, Avastin is used as maintenance therapy but usually only if you were taking it with the first line therapy.

    I am open to being corrected. It seems that some doctors do maintenance while others do not. I don't know if this is research based or not. I kind of think not. Otherwise, more women would be doing "maintenance therapy."

    I know the taxol/taxotere are really rough on your hair so don't expect hair if you stay on that stuff. Small concession if the stuff works.

    Re: CA-125

    That's a can of worms for all of us! It is kind of expected that the CA-125 is going to reach its "nadir" (lowest point) by the time you finish your first line therapy. That's if the cancer is sensitive to the chemo. Many women experience a little "bounce back" in their number as the immune system recovers.
    That's where the number goes up a few points. That's still considered stable.

    The oncologists seem to want to drive the CA-125 into the single digits or at least see how low that number will go. Someone on this board went down to ZERO! Then it bounced up to 3. Still stable.

    I think I never was able to become stable because my particular blend of cancer lesions is heterogenous. The stuff that was sensitive to platinum died back while the taxol sensitive lesions developed resistance (according to a chemo sensitivity assay). So I'm seeing what gemcitabine can do for me now.
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #4
    LaundryQueen said:

    Maintenance chemo
    Jadav: from what I could figure, maintenance chemo is either taxol or taxotere alone. There is a cumulative toxicity with the platinum chemo drugs so those are used for active disease only. Sometimes, Avastin is used as maintenance therapy but usually only if you were taking it with the first line therapy.

    I am open to being corrected. It seems that some doctors do maintenance while others do not. I don't know if this is research based or not. I kind of think not. Otherwise, more women would be doing "maintenance therapy."

    I know the taxol/taxotere are really rough on your hair so don't expect hair if you stay on that stuff. Small concession if the stuff works.

    Re: CA-125

    That's a can of worms for all of us! It is kind of expected that the CA-125 is going to reach its "nadir" (lowest point) by the time you finish your first line therapy. That's if the cancer is sensitive to the chemo. Many women experience a little "bounce back" in their number as the immune system recovers.
    That's where the number goes up a few points. That's still considered stable.

    The oncologists seem to want to drive the CA-125 into the single digits or at least see how low that number will go. Someone on this board went down to ZERO! Then it bounced up to 3. Still stable.

    I think I never was able to become stable because my particular blend of cancer lesions is heterogenous. The stuff that was sensitive to platinum died back while the taxol sensitive lesions developed resistance (according to a chemo sensitivity assay). So I'm seeing what gemcitabine can do for me now.

    My doctor is giving me
    My doctor is giving me Avaistan alone for 1 year (every 3 weeks) as maintenance.
  • zoesmom
    zoesmom Member Posts: 3
    #5
    Thank you for all of your
    Thank you for all of your comments regarding CA125 numbers. Also about maintenance chemo. I spoke with doctors at UCSF about the latter. One doctor referenced studies done on the subject so there is data available. But of course, each cancer seems to be so unique. I can't stand to have any more chemo at this point. Neuropathy started 10 days after my last chemo treatment and has been gaining steadily each and every day. That's the latest adventure--standing!
  • cfont11
    cfont11 Member Posts: 115
    #6
    CA 125
    This number is a source of anxiety for all of us. Mine has bounced around for a year and a half. My onc uses 35 and under as normal so as long as you are under 35, even if it goes up a couple of points, the onc is not concerned. My onc looks at trends, not just one test to another. I am also 3C. Was declared cancer free in June but had recurrence in August. I have abdominal issues, an ileostomy and 2 bowel obstructions and my CA 125 is now 410, mostly due to the last bowel obstruction. Anything going on in your abdomen can cause a false reading in the CA125. Even if you have the flu or something, your numbers could be off. Several women I have met in a support group have talked about their numbers bouncing around. Everyone is different, that is why the CA125 alone is not always a good indication of what is going on.

    Chris
  • zoesmom
    zoesmom Member Posts: 3
    #7
    cfont11 said:

    CA 125
    This number is a source of anxiety for all of us. Mine has bounced around for a year and a half. My onc uses 35 and under as normal so as long as you are under 35, even if it goes up a couple of points, the onc is not concerned. My onc looks at trends, not just one test to another. I am also 3C. Was declared cancer free in June but had recurrence in August. I have abdominal issues, an ileostomy and 2 bowel obstructions and my CA 125 is now 410, mostly due to the last bowel obstruction. Anything going on in your abdomen can cause a false reading in the CA125. Even if you have the flu or something, your numbers could be off. Several women I have met in a support group have talked about their numbers bouncing around. Everyone is different, that is why the CA125 alone is not always a good indication of what is going on.

    Chris

    Thanks Chris, very helpful

    Thanks Chris, very helpful
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    zoesmom said:

    Thanks Chris, very helpful

    Thanks Chris, very helpful

    I did a year of Taxol
    I did a year of Taxol maintenance. My doctor left the decision entirely up to me, and I couldn't sign on fast enough. Not everyone feels that way, though. If you have neurorpathy issues, they probably would not give you another year of Taxol anyway. That's one of its main drawbacks.

    My post-treatment CA125 was less than 5, at its lowest, and 19 at its highest. The 19 was registered 10 days after hernia surgery, however.

    My doctor says any number below 10 is all the same number.

    Carlene
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #9
    ca125
    what you have to watch for is a trend upwards or a doubling of the number. My number went down to one after finishing six rounds of carbo/taxol. But I was not optimally debulked ( there was a lot of cancer left on my colon ) and my ca125 started rising by two points every time it was tested til after I finished my treatment with avastin. Then it started to double each time so a pet/ct scan showed an enlarged paraortic node and I am on carbo/gemzar/avastin.
    A two point rise is nothing to be concerned over but your dr will be watching for a trend good luck
    Colleen

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