CA 125 went up to 7.5 :(

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
This is my post-treatment CA125 history:
May, 2010: 7
June, 2010:7.3
July, 2010:4.8
Aug, 2010: 6.9
Sept, 2010:6.9
Oct, 2010: 6.4
Nov, 2010: 7.5

I know it's still very low, but that doesn't stop me from fretting and fussing. Crazy, I know. And obsessive. I hate that I can't seem NOT to allow these damn numbers to rule my life.

Carlene

Comments

  • debp26
    debp26 Member Posts: 11
    #2
    Your numbers are great!
    Hi Carlene. Your numbers are fantastic, you go girl!! I was surprised to see that you get yours checked every single month. I was told that I will go every three months. I was just told on Friday that I'm in remission. After my second chemo my CA125 was 4 and only went up to 6. I was told the number/s are good regardless. Sometimes when checking our blood it is not always done on the same machine and hence the calibration can be off. The doctor insists that if there was an increase in the numbers several times in a row, he would be more suspicious and/or concerned. You're doing great!

    Deb
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #3
    debp26 said:

    Your numbers are great!
    Hi Carlene. Your numbers are fantastic, you go girl!! I was surprised to see that you get yours checked every single month. I was told that I will go every three months. I was just told on Friday that I'm in remission. After my second chemo my CA125 was 4 and only went up to 6. I was told the number/s are good regardless. Sometimes when checking our blood it is not always done on the same machine and hence the calibration can be off. The doctor insists that if there was an increase in the numbers several times in a row, he would be more suspicious and/or concerned. You're doing great!

    Deb

    Looking good from where I am
    Looking good from where I am sitting! Try not to threat to much about them , surely they would have jumped a lot more if it was anything to worry about.
    We haven't got to the 3 monthly number part yet!!! But I expect I will worry about mums numbers much the same as you worry about yours, for now though don't worry be happy!
    Xx
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    debp26 said:

    Your numbers are great!
    Hi Carlene. Your numbers are fantastic, you go girl!! I was surprised to see that you get yours checked every single month. I was told that I will go every three months. I was just told on Friday that I'm in remission. After my second chemo my CA125 was 4 and only went up to 6. I was told the number/s are good regardless. Sometimes when checking our blood it is not always done on the same machine and hence the calibration can be off. The doctor insists that if there was an increase in the numbers several times in a row, he would be more suspicious and/or concerned. You're doing great!

    Deb

    Deb....I am doing a year of
    Deb....I am doing a year of Taxol maintenance, thus the labs every 4 weeks. Once the maintenance is over (Jan), I will move to every 3 month check-ups.

    Congrats on your dance with NED. I have been "with him" officially since last Spring, though my doctor said he suspected I was in remission a couple of months prior to the end of first line treatment.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    Hi Carlene,
    probably if they were to take your CA125 seven times in one day, you would get the same range of results. Actually, 0 to 10 is considered the same number. NOT obsessing about the numbers has very little to do with the number itself, but wanting to feel in control of your health, I think. I have obsessed for over 3 years, all the while, telling myself not to.

    I think I have finally made a break through, in not letting the number or status of my cancer decide how I feel for the day. But, it has not been easy to do. I tend to obsess too.

    Go cook something!!!
    Lol
    kathleen
  • leesag
    leesag Member Posts: 621 Member
    #6
    Hissy_Fitz said:

    Deb....I am doing a year of
    Deb....I am doing a year of Taxol maintenance, thus the labs every 4 weeks. Once the maintenance is over (Jan), I will move to every 3 month check-ups.

    Congrats on your dance with NED. I have been "with him" officially since last Spring, though my doctor said he suspected I was in remission a couple of months prior to the end of first line treatment.

    Carlene

    Numbers
    My doctor said not to worry, as long as it was below "normal" she wasn't worried. She mentioned 26 as normal for her standards.

    :)
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
    leesag said:

    Numbers
    My doctor said not to worry, as long as it was below "normal" she wasn't worried. She mentioned 26 as normal for her standards.

    :)

    And some labs use
    35 as their "normal". Everyone tends to have a different base line, apparently, though. And it fluctuates with inflamation, and through out the day. If it were just cut and dried, it would actually be easier to figure out.
    k
  • beth1465
    beth1465 Member Posts: 63 Member
    #8
    My MD told me that chasing
    My MD told me that chasing the numbers will make you crazy. He said he could draw 3 tubes of blood, send them in one at a time and get 3 different readings. He said the most important thing is how you feel. The labs are just a part of the whole picture. I would love to have your numbers!!

    Beth
  • ten101
    ten101 Member Posts: 14
    #9
    hang in there
    I was so disturbed by your subject line. I think you'll be less ruled by your numbers when you don't have them checked so often, you'll have to just let that go. It's not easy taking that first break from having the tests so often because you think you know what's going on then and you have some control. But hopefully being away from it for a time will help you. And take solace from the information the other ladies have given about how good your numbers are. It's good news, I'm sure your doctor would tell you that anyway.
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    unknown said:

    This comment has been removed by the Moderator

    Going to change the subject
    Going to change the subject line before I give someone a heart attack. Sorry.
  • cathyp
    cathyp Member Posts: 376 Member
    #12
    Hissy_Fitz said:

    Going to change the subject
    Going to change the subject line before I give someone a heart attack. Sorry.

    Hi Ladies
    I've asked this before when I've seen similar posts. So here goes again. I had Hodgkins Lymphoma in 1989 and 1994. The radiation treatment left me w/Breast Cancer in 2008. Later that year, I had complex ovarian cyst and a CA-125 of 46. The cyst was benign. After the surgery it went up to 99. For over 2 years it has been up and down but never normal. Right now, it is 36 and I have a cyst within a cyst and a uterine polyp. We finally decided to remove the other ovary and uterus at the end of this month.
    So when I see your low numbers after your brave battles, I'm so happy for you but I also wonder. Even if they crept up to 35 or so right over normal, does it always mean a recurrence. There are so many things that influnce that number. Do your doctors treat you based on that number alone?
    Thanks and best wishes to you all,
    Cathy
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #13
    cathyp said:

    Hi Ladies
    I've asked this before when I've seen similar posts. So here goes again. I had Hodgkins Lymphoma in 1989 and 1994. The radiation treatment left me w/Breast Cancer in 2008. Later that year, I had complex ovarian cyst and a CA-125 of 46. The cyst was benign. After the surgery it went up to 99. For over 2 years it has been up and down but never normal. Right now, it is 36 and I have a cyst within a cyst and a uterine polyp. We finally decided to remove the other ovary and uterus at the end of this month.
    So when I see your low numbers after your brave battles, I'm so happy for you but I also wonder. Even if they crept up to 35 or so right over normal, does it always mean a recurrence. There are so many things that influnce that number. Do your doctors treat you based on that number alone?
    Thanks and best wishes to you all,
    Cathy

    Doctors don't start a new
    Doctors don't start a new round of chemo based solely on a rise in CA125. They first look for a trend - numbers that double or triple every month for three months or so. And then they will do a CT or PET scan, to try and determine if there is a verifiable recurrence.

    There are plenty of women who have never had cancer, but whose CA125 is in the "teens". Someone who has had OC, and whose baseline is 5, and suddenly sees it go to 12 or 15 will undoubtedly bear watching, though. It sounds like your norm may be higher than some of the rest of us, plus you have other issues going on, and they could, as you mentioned, influence your CA125.

    Last month I had 3 surgeries inside of 2 weeks, and walked around for over a week with an eroded port poking thru my chest. I was prepared for an elevated CA125, but it actually went down a half point. So I would be reluctant to blow off a rise in my CA125, even if I had a cold or something.

    I have read that anything below 10 is all the same number, whether it's 1 or 9, but I'm not convinced of that. Stressing over our numbers is a waste of energy and time, and I realize that as much as the next person, but I still do it. It's a knee-jerk reaction that may get better with time, but somehow, I doubt it. I am such a control freak, and I just HATE it when things beyond my control hold sway over my life.

    Carlene
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #14
    Hissy_Fitz said:

    Doctors don't start a new
    Doctors don't start a new round of chemo based solely on a rise in CA125. They first look for a trend - numbers that double or triple every month for three months or so. And then they will do a CT or PET scan, to try and determine if there is a verifiable recurrence.

    There are plenty of women who have never had cancer, but whose CA125 is in the "teens". Someone who has had OC, and whose baseline is 5, and suddenly sees it go to 12 or 15 will undoubtedly bear watching, though. It sounds like your norm may be higher than some of the rest of us, plus you have other issues going on, and they could, as you mentioned, influence your CA125.

    Last month I had 3 surgeries inside of 2 weeks, and walked around for over a week with an eroded port poking thru my chest. I was prepared for an elevated CA125, but it actually went down a half point. So I would be reluctant to blow off a rise in my CA125, even if I had a cold or something.

    I have read that anything below 10 is all the same number, whether it's 1 or 9, but I'm not convinced of that. Stressing over our numbers is a waste of energy and time, and I realize that as much as the next person, but I still do it. It's a knee-jerk reaction that may get better with time, but somehow, I doubt it. I am such a control freak, and I just HATE it when things beyond my control hold sway over my life.

    Carlene

    CA 125 discrepancies
    Just to re-iterate what you have said about women who are cancer free having a high CA125. My sister got hers checked when she found out that she had inherited the BRCA2+ gene mutation. She is cancer FREE and her CA125 is 17. So that just proves your point Carlene.

    Also, another point about these numbers. Mine shot up from 71 to 1,280 but my CT scan showed no change???????????????????? Go figure??????????????? I am now on my second line chemo because of the numbers and not the scan results.

    Tina

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