Perspective on a CA-125 of 128 for my Mother after all this

Lisa13Q
Lisa13Q Member Posts: 677
edited March 2014 in Ovarian Cancer #1
Can someone give me some perspective on what this means? When she was diagnosed her CA-125 was 1645. Now it is 128. I was hoping for somewhere around 7-10 after all the chemo and surgery and post surgery chemo. Am I dreaming? Doesn't 128 mean that they didn't get it all? My mother said that her oncologist was happy with this, but I wasn't and she could tell I was disappointed, and got mad at me for wanting a miracle. I think I should have acted more ecstatic. But isn't the goal between 1- 10? If it is still at 128 after all this, that's not a good sign for remission is it? or does it mean that she just gets more chemo until it's lower? I don't know. She was in a bad mood today because she got her taxol and has to go in tomorrow for the damn cisplatin, and she was so sick from it last time. Aaaaagh....do we ever get to rejoice that she's in remission and that all this was worth it?

Comments

  • arbor3
    arbor3 Member Posts: 103
    #2
    CA125
    Hi Lisa

    I know it can be frustrating that her CA did not come down to 10, but hers was very high to begin with, so after chemo and surgery for it to come down to 128 is a sign that the chemo is killing off the cancer cells. That is all that we can hope for, I know its a struggle. I myself know I will never be in remission all I hope for is that the Chemo keeps my Ca125 down and keeps killing the cancer cells or I guess more that its shrinking the cells. All I hope for is that between Chemo I can again live a sorta of normal life, and I live it to the fullest. Let her be in a bad mood, there are times that you can't live with me, but my family brings me back and we rejoice that I am still here.

    My thoughts and prayers are with you and your mother

    Dinora
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    CA-125
    Your mother may be really active in manufacturing the cancer antibodies. At Stage IV, I understood from the start that ther would be no cure. My aim is to keep the cancer cells from overcoming the ability of the chemo to hold them back. I started with a CA-125 of 2999 and it was up before I started chemo to over 3000. I had 4 doses of carbo/taxol, then debulking surgery to get to Ca-15 of 30. Four more doses of carbo/taxol to get to below 10. I did 1 dose of doxil, after this, because the CT-scan was misread and the report said my three liver tumors were a little bigger than before the surgery. They had burned out the liver tumors with radio frequency waves, leaving three holes larger than the tumors that filled with fluid. This looked like cancer tumors to the radiologist who was not told about the RFA. I took 11 months of taxol (lower dose) but after 6 doses the CA-125 (under 10) started rising again, indicating that taxol was not working. I tried about 6 months of anti-estrogen pills which kept the CA-126 from rising so rapidly.
    It did continue to rise but not showing on the CT=scans. When the CA-125 got over 300, we started chemo again. After 4 doses my reading was 53. Last week it was 59, so either the carbo has quit working on my cells or I had some little inflamation causing the rise. Yesterday, my oncologist said that we would see what the CA125 reading will be at the end of Dec. to decide what to try next. So it is a "wait and see" holding pattern.

    Anyway, the high reading of 128 could be inflamation or a missed reading. Labs do make mistakes. It is important to look back at the whole history. I actually graphed mine the first 14 months so I could see a line. We are all different and your Mother's may remain over 100, but still have no tumors showing on a CT-scan or detected by the physical exam. My gyn/onc uses all three to determing growth. When I started this chemo I am on now, the CT showed a 2.5 cm tumor that he could feel through exam, and my CA-12 was over 400. Three positives put me on chemo again.

    My goal is to take the most chemo that I can, with giving me time between doses to function and enjoy a good quality of life and that is what the doctors are trying to achieve. All chemos stop working on us after awhile and the trick is to keep changing them to obtain the best results. I try never to think of a "cure" but just be grateful for the time I have to enjoy just doing the fun stuff of "living". When I started this journey in Mar. 2007, I thought I had about 10 months to live (from reading the internet stories) so I am 2.75 years in and that seems like a blessing to me!

    What is your Mother's goal? What is yours? A CA-125 of 10 or below may not be a normal reading for your mother. We were not given a baseline blood test before the cancer appeared so we don't know.
    I think you need to wait awhile and give the cisplatin time to work and not react so at the readings.
    I know that CA-125's can drive us crazy when they go up, but I have learned not to jump to big conclusions from them. ((HUGS))) Saundra
  • Mawty
    Mawty Member Posts: 133
    #4
    saundra said:

    CA-125
    Your mother may be really active in manufacturing the cancer antibodies. At Stage IV, I understood from the start that ther would be no cure. My aim is to keep the cancer cells from overcoming the ability of the chemo to hold them back. I started with a CA-125 of 2999 and it was up before I started chemo to over 3000. I had 4 doses of carbo/taxol, then debulking surgery to get to Ca-15 of 30. Four more doses of carbo/taxol to get to below 10. I did 1 dose of doxil, after this, because the CT-scan was misread and the report said my three liver tumors were a little bigger than before the surgery. They had burned out the liver tumors with radio frequency waves, leaving three holes larger than the tumors that filled with fluid. This looked like cancer tumors to the radiologist who was not told about the RFA. I took 11 months of taxol (lower dose) but after 6 doses the CA-125 (under 10) started rising again, indicating that taxol was not working. I tried about 6 months of anti-estrogen pills which kept the CA-126 from rising so rapidly.
    It did continue to rise but not showing on the CT=scans. When the CA-125 got over 300, we started chemo again. After 4 doses my reading was 53. Last week it was 59, so either the carbo has quit working on my cells or I had some little inflamation causing the rise. Yesterday, my oncologist said that we would see what the CA125 reading will be at the end of Dec. to decide what to try next. So it is a "wait and see" holding pattern.

    Anyway, the high reading of 128 could be inflamation or a missed reading. Labs do make mistakes. It is important to look back at the whole history. I actually graphed mine the first 14 months so I could see a line. We are all different and your Mother's may remain over 100, but still have no tumors showing on a CT-scan or detected by the physical exam. My gyn/onc uses all three to determing growth. When I started this chemo I am on now, the CT showed a 2.5 cm tumor that he could feel through exam, and my CA-12 was over 400. Three positives put me on chemo again.

    My goal is to take the most chemo that I can, with giving me time between doses to function and enjoy a good quality of life and that is what the doctors are trying to achieve. All chemos stop working on us after awhile and the trick is to keep changing them to obtain the best results. I try never to think of a "cure" but just be grateful for the time I have to enjoy just doing the fun stuff of "living". When I started this journey in Mar. 2007, I thought I had about 10 months to live (from reading the internet stories) so I am 2.75 years in and that seems like a blessing to me!

    What is your Mother's goal? What is yours? A CA-125 of 10 or below may not be a normal reading for your mother. We were not given a baseline blood test before the cancer appeared so we don't know.
    I think you need to wait awhile and give the cisplatin time to work and not react so at the readings.
    I know that CA-125's can drive us crazy when they go up, but I have learned not to jump to big conclusions from them. ((HUGS))) Saundra

    CA-125
    I totally agree with what Saundra says. My CA-125 number doesn't actually help me much. When I was full of cancer (3C) before surgery, my CA-125 was only 58. After all the chemo and now on the Femara, I'm at 22 and the doctor says I'll probably never go below that. Of course, that's in the normal range, but I see so many other people on here with 3 and 5, or at least below 10, and I wonder why I can't get there. But then I realize that the CA-125 isn't a good factor alone. 58 doesn't make sense when I was so full of the beast. So I think you have to factor in the scans, if there's evidence of disease your mom notices, and CA-125.

    Hugs to you.

    Marty
  • groundeffect
    groundeffect Member Posts: 639 Member
    #5
    CA-125
    The most important thing in all of this is how the patient feels, not the numbers. Any inflammation can throw off the CA-125 test, including arthritis, and it's a terrible thing to depend for anything other than monitoring possible recurrence.

    I have never been told I was in remission. I was asymptomatic for five years with a CA-125 of 13 to 17 (mostly 17) when it started rising.

    While your mom has to deal with the chemo, I think you could help her and yourself by taking control of your knowledge and reading about the disease. The ACS has a great book called "A Guide to Survivorship for Women with Ovarian Cancer" by F.J. Montz, M.D., FACOG, FACS and Robert E. Bristow, M.D., FACOG. I have found it helpful during this second trip through surgery and chemo.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
    CA125
    Hi Lisa, I see that you have received some great insight here and will only add that although my norm is low, and it never really ever got that high (500 before dx) I watch the trend and try not to focus on the number. Much easier said than done!!

    She is a real trooper to hang in there with the cisplatin. I did not tolerate that well at all. I don't regret taking it though, as it gave me 3 months off from chemo.

    You have to take it a day art a time Lisa, hang in there!!

    Hugs,
    Kathleen:)
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #7
    ditto
    I just wanted to say Ditto to the other replies. It is hard to learn not to focus on remission but that is what many of us learn..... we rejoice in living and we can live with cancer or as I like to say inspite of the cancer. I have never been to the remission place, never ever danced with NED but it is almost my 7th anniversary since diagnosis. Focus on living life to fullest and you just never know NED may sneak in for a dance.

    Love ♥ Prayers ♥ Hugs Bonnie
  • Mawty
    Mawty Member Posts: 133
    #8
    BonnieR said:

    ditto
    I just wanted to say Ditto to the other replies. It is hard to learn not to focus on remission but that is what many of us learn..... we rejoice in living and we can live with cancer or as I like to say inspite of the cancer. I have never been to the remission place, never ever danced with NED but it is almost my 7th anniversary since diagnosis. Focus on living life to fullest and you just never know NED may sneak in for a dance.

    Love ♥ Prayers ♥ Hugs Bonnie

    NED
    Bonnie, I'm praying that you do get a chance to dance with NED. I'm sad you've never had that after 7 years! Goodness.

    Marty
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #9
    Mawty said:

    NED
    Bonnie, I'm praying that you do get a chance to dance with NED. I'm sad you've never had that after 7 years! Goodness.

    Marty

    Thanks to you All
    I appreciate the insight. I still haven't figured out yet that it's day by day and enjoy each one. Also, we CAN live with cancer....I'm still black and white...I want it all gone....I also think that the doctors and Mom have been so remission oriented that I have focused on that rather than the fact that I have had some wonderful moments and times with my mother over the past 5 months that I wouldn't otherwise have had. I think my life has changed for the better..I have a newer purpose and these are gifts. I guess I wanted different gifts!! LOL...oh to learn to appreciate the ones that God gives us!! I'm at Mayo right now waiting for my post-op CA-125...will keep you posted...I hope you all have a wonderful day.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #10
    kayandok said:

    CA125
    Hi Lisa, I see that you have received some great insight here and will only add that although my norm is low, and it never really ever got that high (500 before dx) I watch the trend and try not to focus on the number. Much easier said than done!!

    She is a real trooper to hang in there with the cisplatin. I did not tolerate that well at all. I don't regret taking it though, as it gave me 3 months off from chemo.

    You have to take it a day art a time Lisa, hang in there!!

    Hugs,
    Kathleen:)

    Cisplatin Sucks
    Oh, she is a tough old bird and is determined. they told her it would have a huge impact so she's doing it. Last time, she fell, fractured her shoulder and spent 5 days in hospital her electrolytes were so bad. This time, we are taking her to hospital day after for fluids and whenever she needs to... She has one more the day before X-Mas and then she gets 3 month off as well and gets to go to her apartment in FL which she loves!!! Hope you are well, and I do plan on visiting you this summer!!!

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