Know I shouldn't complain but Ca 125 up to 21 from 6, thought NED would last longer!

Sara Zipora
Sara Zipora Member Posts: 231
in Uterine/Endometrial Cancer #1
Dear all,

Two month since the end of Chemo, was Dancing with NED, went to Broadway shows, touring.
Now still quite anemic, white count in toilet, but all that pales against rise in Ca 125.

I know that some folks here have hundred point spikes, but I thought my NED would last longer than two months.

Doc unimpressed, he says repeat bloods and go for CT in two weeks, but I'm soooo blue!

Sara

Comments

  • norma2
    norma2 Member Posts: 479
    #2
    May be nothing to worry about!!!
    My CA 125 was as low as 10 during treatment. It hovers around 20-17 and has been for the past year and a half. CAT scans, exams, no symptoms, all point to NED. Maybe the CT will help put your mind to ease. Hoping for the best for you. Norma
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #3
    Sara sorry you are feeling down
    A CA 125 of 22 is still within the normal range. Below 35 is still normal. CA 125's can fluctuate for different reasons. You can still Dance with NED and celebrate each day. I am hoping that your CT scan shows NED and you can continue to Dance with NED. In peace and caring.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #4
    Ro10 said:

    Sara sorry you are feeling down
    A CA 125 of 22 is still within the normal range. Below 35 is still normal. CA 125's can fluctuate for different reasons. You can still Dance with NED and celebrate each day. I am hoping that your CT scan shows NED and you can continue to Dance with NED. In peace and caring.

    Blueness ur note
    Thanks so much for ur story., I don't want to appear ungrateful, but had been hoping and praying for longer stretch. Thank yo so much for ur encouragement.
    Sara
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #5
    norma2 said:

    May be nothing to worry about!!!
    My CA 125 was as low as 10 during treatment. It hovers around 20-17 and has been for the past year and a half. CAT scans, exams, no symptoms, all point to NED. Maybe the CT will help put your mind to ease. Hoping for the best for you. Norma

    Thanks Norma,
    Your note definitely gives me encouragement.

    Thank you so much!

    Sara
  • sleem
    sleem Member Posts: 92
    #6
    CA 125 rising
    Mine just went up from 13.7 to 21. My hosptial is using new methodology for CA 125 which I just found out could make rise points go all over the place higher. I feel better knowing that for now. However, might doctor and I don't know if perhaps there was a rise but masked with new methodology of reading CA 125. After next 3 months will have another CA 125 and see if the 'new' methodology is still what equal to the teen numbers I let and now is about the same with a score of 21-- or if it really spiked. It worried me too. If mine rises next time to 25, I'm in for scan I was told. It is scary; but, I'll wait and see if it really went up or the new numerical rating is actually not a rise.

    Hang in there, my doctor was not concern yet with mine being 21.

    Some studies for ovarian are being currently for seeing if rising CA 125 over a period of time still within normal range CA 125 shows possible recurrence before able to see on scan. But, this was for ovarian, not uterine.
    Your doctor and mine are both telling us the same thing not to worry with this 20...range. I think we might all feel concerned when it starts reaching 35. So we are all in this together...
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    sleem said:

    CA 125 rising
    Mine just went up from 13.7 to 21. My hosptial is using new methodology for CA 125 which I just found out could make rise points go all over the place higher. I feel better knowing that for now. However, might doctor and I don't know if perhaps there was a rise but masked with new methodology of reading CA 125. After next 3 months will have another CA 125 and see if the 'new' methodology is still what equal to the teen numbers I let and now is about the same with a score of 21-- or if it really spiked. It worried me too. If mine rises next time to 25, I'm in for scan I was told. It is scary; but, I'll wait and see if it really went up or the new numerical rating is actually not a rise.

    Hang in there, my doctor was not concern yet with mine being 21.

    Some studies for ovarian are being currently for seeing if rising CA 125 over a period of time still within normal range CA 125 shows possible recurrence before able to see on scan. But, this was for ovarian, not uterine.
    Your doctor and mine are both telling us the same thing not to worry with this 20...range. I think we might all feel concerned when it starts reaching 35. So we are all in this together...

    We get to complain!
    No matter how minor in comparison to other worries, you get to complain to us about anything you want to! Don't worry about us - we can take it.

    Suzanne
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #8
    Double Whammy said:

    We get to complain!
    No matter how minor in comparison to other worries, you get to complain to us about anything you want to! Don't worry about us - we can take it.

    Suzanne

    Thanks Suzanne,
    Thank you for your support. I read the other posts and just feel whiney!!
    Tomorrow night is Passover, three of my four kids and their progeny and my Mom are going to be with us. Been cooking for four days and my daughter and daughters in law are helping too! We'll be 30!

    All the best and happy healthy holidays to all,
    Sara
  • Songflower
    Songflower Member Posts: 608
    #9
    Sara Zipora said:

    Thanks Suzanne,
    Thank you for your support. I read the other posts and just feel whiney!!
    Tomorrow night is Passover, three of my four kids and their progeny and my Mom are going to be with us. Been cooking for four days and my daughter and daughters in law are helping too! We'll be 30!

    All the best and happy healthy holidays to all,
    Sara

    You are not whining
    Sara, you are not whining! I think we all feel pressure to be positive and live each day. We know that's what we need to do. But we still have fear and grieving to do. There's a difference between letting feelings be felt and wallowing in self pity. Every time our labs change we get so frightened. Research studies have shown that CA 125 levels cause stress and decrease in quality of life. They may help us to know where we are but they also cause alot of stress.

    Sometimes I have a frightened cry day and it helps me to release and then suddenly the tulips are brighter and my pansies are so beautiful they talk to me. It helps to share your fears. I think this blog forum helps us to be strong but I also would like it to be a forum to really share feelings. Fear and frustration are part of what we need to work through. So don't be afraid to cry on my shoulder, I know when we wipe away the tears and then smile we really do better.

    Diane
  • Rewriter
    Rewriter Member Posts: 493 Member
    #10
    Sara Zipora said:

    Thanks Suzanne,
    Thank you for your support. I read the other posts and just feel whiney!!
    Tomorrow night is Passover, three of my four kids and their progeny and my Mom are going to be with us. Been cooking for four days and my daughter and daughters in law are helping too! We'll be 30!

    All the best and happy healthy holidays to all,
    Sara

    Happy and healthy Passover
    Dear Sara and my other Jewish sisters,

    Tonight begins one of my favorite holidays. Family and friends gather, and the food is spectacular. My last few Passovers have taken place on days full of sunshine and flowers. For this holiday, I hope all of you--and everyone here--can escape from pain and worry and focus on the joy of living and being with loved ones.

    Much love,

    Jill

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