CA-125 Good/Bad

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ladyjogger31
ladyjogger31 Member Posts: 289
edited March 2014 in Ovarian Cancer #1
Hi, I've had surgery and had 8 treatments of carbo/taxol and now onto my 5th treatment of Doxil with no break in between. My CA-125 levels came back 40,34,35 and(after my last chemo treatment) at 34, which I understood to be acceptable, but after reading a lot of the messages on this board showing women with lower levels, I wonder if I should be concerned. The Johns Hopkins site has info indicating that 35 or lower would be desireable.Before surgery my Ca-125 was 13,000. Can anyone shed some light on this for me?
Hugs and Paryers,
Terry

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  • saundra
    saundra Member Posts: 1,370 Member
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    CA-125
    When I first started the normal high was 35 and then it switched to 21 about 8 months ago. I thought it was because they started sending mine to a Dallas lab for a more sensitive test. My guess is that it is the lab and the specific equipment that made the difference. I started just under 3000 and my lowest reading was 4. Since we don't know what our "normal" reading is, I am not going to worry too much at anything under 100. My daughter now has the test annually and her normal is around 11. My oncologist says that a consistant rise is what to watch for and that is why I get the test every month. When I started my chemo vacation it gradually went up and got to 84 before the anti-estrogen kicked in and dropped it to 50. I'll bet your CA-125 is just really sensitive as indicated by the 13000 high number you started with.

    Hugs and Prayers,
    Saundra
  • Dreamdove
    Dreamdove Member Posts: 175 Member
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    I've been told as long as
    I've been told as long as they see 35 and under, they are happy. Nobody has 0, even those who never had cancer. I just read that half of women who have been diagosed with ovarian cancer it never showed up in their CA-125. Other conditions cause a rise in that test, as well. Even pregnancy! Mine was 1,800 at time of diagnosis and now, 2 years later it is 9. Sometimes 7, 6 or 8. I feel good about that but I guess if it was 34, it would still be ok. But if I had other symptoms that the cancer was returning, I would indeed be concerned.
  • softD
    softD Member Posts: 69
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    Dreamdove said:

    I've been told as long as
    I've been told as long as they see 35 and under, they are happy. Nobody has 0, even those who never had cancer. I just read that half of women who have been diagosed with ovarian cancer it never showed up in their CA-125. Other conditions cause a rise in that test, as well. Even pregnancy! Mine was 1,800 at time of diagnosis and now, 2 years later it is 9. Sometimes 7, 6 or 8. I feel good about that but I guess if it was 34, it would still be ok. But if I had other symptoms that the cancer was returning, I would indeed be concerned.

    rising ca125!
    Hi,
    I'm really scared.. I've just finished chemo 3 months ago...6x IV /IP 3 wks apart. Ca125 stayed at 12 but has now suddenly jumped to 74 since my last test 2 weeks ago. I have been in hospital with a bowel obstruction amd wondered if this may have had any bearing in the increased marker?
    Has anyone had any experience with their markers being affected for other reasons than the cancer being back?
    Worried sick, don't know what to think now....luv Carolyn :(
  • mopar
    mopar Member Posts: 1,972 Member
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    softD said:

    rising ca125!
    Hi,
    I'm really scared.. I've just finished chemo 3 months ago...6x IV /IP 3 wks apart. Ca125 stayed at 12 but has now suddenly jumped to 74 since my last test 2 weeks ago. I have been in hospital with a bowel obstruction amd wondered if this may have had any bearing in the increased marker?
    Has anyone had any experience with their markers being affected for other reasons than the cancer being back?
    Worried sick, don't know what to think now....luv Carolyn :(

    OH, THAT NUMBER!
    Carolyn:
    Sometimes we live and breathe by that number. It is surely a 'marker' for all of us, and there are no clear answers, but eventually we figure some things out. For me, I realized that my CA125 fluctuations are definitely related to things such as inflammation, stress, being run down, etc. I also discovered that the consistent, upward rise in my marker was more of an indication that something was going on, especially in the absence of other symptoms. For you, I'd be inclined to say it could very well be the bowel obstruction.

    One experience in particular: My CA125 during a particular time frame was averaging 14-16 or so. My doctor put me on Boniva, because he felt my DEXA scan showed bone loss. Well, within 4 hours of taking it I was in excruciating pain, fever and more. This did not subside for 10 days. My next CA125 was at 27! I was panicky when I received the results of my test. Two months later, it was back down to 16. My doctor INSISTS it had nothing to do with Boniva. I know otherwise. I even called the company that makes Boniva. They followed up with me several times by letter and phone. They told me that I am NEVER to take Boniva or similar drugs again. Then when I talked to the physician assistant at my doctor's office and told her that he didn't feel it was related, she concurred that it would very likely be the cause of the marker rise, as this drug causes inflammation. And inflammation can definitely raise that marker.

    Well, again, it could very well be your obstruction. See what happens at your next blood test. And I hope they are getting this obstruction under control, and helping you to prevent this in the future.

    Hang in there, Carolyn! Sending HUGS and PRAYERS your way! Keep us informed.

    Monika
  • softD
    softD Member Posts: 69
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    mopar said:

    OH, THAT NUMBER!
    Carolyn:
    Sometimes we live and breathe by that number. It is surely a 'marker' for all of us, and there are no clear answers, but eventually we figure some things out. For me, I realized that my CA125 fluctuations are definitely related to things such as inflammation, stress, being run down, etc. I also discovered that the consistent, upward rise in my marker was more of an indication that something was going on, especially in the absence of other symptoms. For you, I'd be inclined to say it could very well be the bowel obstruction.

    One experience in particular: My CA125 during a particular time frame was averaging 14-16 or so. My doctor put me on Boniva, because he felt my DEXA scan showed bone loss. Well, within 4 hours of taking it I was in excruciating pain, fever and more. This did not subside for 10 days. My next CA125 was at 27! I was panicky when I received the results of my test. Two months later, it was back down to 16. My doctor INSISTS it had nothing to do with Boniva. I know otherwise. I even called the company that makes Boniva. They followed up with me several times by letter and phone. They told me that I am NEVER to take Boniva or similar drugs again. Then when I talked to the physician assistant at my doctor's office and told her that he didn't feel it was related, she concurred that it would very likely be the cause of the marker rise, as this drug causes inflammation. And inflammation can definitely raise that marker.

    Well, again, it could very well be your obstruction. See what happens at your next blood test. And I hope they are getting this obstruction under control, and helping you to prevent this in the future.

    Hang in there, Carolyn! Sending HUGS and PRAYERS your way! Keep us informed.

    Monika

    ca125
    Hi
    Thanx for your hugs and prayers, they are all coming my way (I live in Australia) and helping me so much.
    I have had a very stressful week worrying about my increased marker.(12-74) I've had it redone one week on, and it is 40!!! Yippee!!
    I saw my onc today and he says this is encouraging that it is dropping and may indicate that it was an inflammatory change due to the bowel obstruction, but cannot be certain yet so we will repeat the c125 weekly for a few weeks and see where it goes. I had a ct which showed no new evidence of disease but was difficult to interperate due to the bowel distention.
    So it's back to the 'wait&see" but at least it has a positive spin on it now...it was sooo gloomy last week.
    I feel much better now and have no pain, so hoping for some good results to post next week. Thank you so much for your kind words and thoughts,
    Take care.........luv Carolyn x
  • ladyjogger31
    ladyjogger31 Member Posts: 289
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    softD said:

    ca125
    Hi
    Thanx for your hugs and prayers, they are all coming my way (I live in Australia) and helping me so much.
    I have had a very stressful week worrying about my increased marker.(12-74) I've had it redone one week on, and it is 40!!! Yippee!!
    I saw my onc today and he says this is encouraging that it is dropping and may indicate that it was an inflammatory change due to the bowel obstruction, but cannot be certain yet so we will repeat the c125 weekly for a few weeks and see where it goes. I had a ct which showed no new evidence of disease but was difficult to interperate due to the bowel distention.
    So it's back to the 'wait&see" but at least it has a positive spin on it now...it was sooo gloomy last week.
    I feel much better now and have no pain, so hoping for some good results to post next week. Thank you so much for your kind words and thoughts,
    Take care.........luv Carolyn x

    Ca-125
    Hi Carolyn, Congrats on your CA-125!!!! 40 is awesome. Mine is at 34 now. I finally got into the normal range.I will be taking a break after my last treatment which is due Feb.23. I will be celebrating my 1 year anniversary on Feb.22 the day I was dx.I have been on Chemo non-stop.
    Sending you Buckets of Teal Hugs and Prayers in Australia,
    Terry
  • saundra
    saundra Member Posts: 1,370 Member
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    Ca-125
    Hi Carolyn, Congrats on your CA-125!!!! 40 is awesome. Mine is at 34 now. I finally got into the normal range.I will be taking a break after my last treatment which is due Feb.23. I will be celebrating my 1 year anniversary on Feb.22 the day I was dx.I have been on Chemo non-stop.
    Sending you Buckets of Teal Hugs and Prayers in Australia,
    Terry

    Chemo Vacation
    Terry, I sure will be praying that you get a chemo vacation like I am on. After 20 chemos and the surgery, I needed a rest. My CA 125 is holding around 50 on the Femara and I have two more months of it. The last chemo was 9/2 and I am feeling so much better now. Still not 100% but am working on it. Barrels of Teal Hugs and Prayers to you. Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
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    softD said:

    ca125
    Hi
    Thanx for your hugs and prayers, they are all coming my way (I live in Australia) and helping me so much.
    I have had a very stressful week worrying about my increased marker.(12-74) I've had it redone one week on, and it is 40!!! Yippee!!
    I saw my onc today and he says this is encouraging that it is dropping and may indicate that it was an inflammatory change due to the bowel obstruction, but cannot be certain yet so we will repeat the c125 weekly for a few weeks and see where it goes. I had a ct which showed no new evidence of disease but was difficult to interperate due to the bowel distention.
    So it's back to the 'wait&see" but at least it has a positive spin on it now...it was sooo gloomy last week.
    I feel much better now and have no pain, so hoping for some good results to post next week. Thank you so much for your kind words and thoughts,
    Take care.........luv Carolyn x

    Lots of Teal Hugs
    Hi Carolyn, lots of teal hugs ♥ prayers are heading to Australia from MN too. :-) Just had to chime in with the rest of gals. Hugs ♥ Prayers Bonnie
  • softD
    softD Member Posts: 69
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    You are such good medicine
    Thanx for all your good wishes.
    I love reading this site, you are all such lovely people, so uplifting and good spirited. Whenever I feel down I read your posts, and realise that things really arn't so bad after all.
    Hope you are all keeping well and having the best weekend ever..good luck with all the results for next week..
    lots luv...Carolyn x
  • saundra
    saundra Member Posts: 1,370 Member
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    softD said:

    You are such good medicine
    Thanx for all your good wishes.
    I love reading this site, you are all such lovely people, so uplifting and good spirited. Whenever I feel down I read your posts, and realise that things really arn't so bad after all.
    Hope you are all keeping well and having the best weekend ever..good luck with all the results for next week..
    lots luv...Carolyn x

    Hi, Aussie
    We love hearing from different countries too. Keep on coming and keeping us updated. It's more fun to have ladies from all over, I think. (((Hugs))) Saundra
  • green50
    green50 Member Posts: 312
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    My count was 14000
    My count has been high but they told me I am just one of those with a high count. mY tumors are small and only on lymphnodes. I have been fighting for almost 7 years. The tumors may give off a lot of fluid making us sensative and our count goes high. What you got to watch is whether it goes down or not and don't worry so much about the numbers. Like Saundra said its good if you can go below 100. Yes they say 0 to 35 is normal but some women like anything else have higher like 50 or 80 and theirs is normal. Praying for all that are counts go down and stay there.
    Take care
    Prayers to all
    Sandy
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