Haven't been on in awhile, but need some help

curlyq1971
curlyq1971 Member Posts: 56
edited March 2014 in Ovarian Cancer #1
Hello Ladies~

To refresh, I was dx Stage 2 Ovarian Cancer in August of 2005 at the age of 34, just had my 5 yr. anniversary a little over a month ago. Underwent complete hysterectomy with removal of everything, including omentum, and 9 lymph nodes which were negative for cancer. My gyn onc was able to remove all of the cancer and I did preventative chemo, 6 rounds of carbo/taxol, my last treatment was January of 2006. At time of dx, my CA125 was 50,500 and for the past 5 years my CA125 has been between 11-15. In August I went for my 6 month check up and my CA 125 came back at 22, (my lab still uses under 35 as normal range) and my onc isn't concerned but it made me feel really nervous, I had another blood draw a month later to put my mind at ease and it stayed the same, onc told me if this rise was due to active cancer it would have already doubled for example 50, given my high CA125 at dx. I did a CT Scan a week later at my request, and it came back negative for cancer which I am very thankful for!!! I would like to know if any of you ladies have had bumps like this in your CA125 and then it goes back down? I'm trying not to panic as everything points to it not being a reoccurance, but it is still in the back of my mind.

Thanks Ladies in advance for your responses, and I hope everyone has a great day!!

Leslie

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    HI, LESLIE
    Yes, it happens to all of us. The numbers can be up and down for lots of reasons - an infection, stress, anything. Follow-up CA125 tests were actually the only thing that alerted my doctor and I, because nothing seemed to show up on the CT. It's the consistent rise they look for. It usually doesn't go up and down if there's real issues, just a consistent upswing.

    Hope this makes you feel better.

    Luv & Hugs,
    Monika
  • naomilansing
    naomilansing Member Posts: 11
    like leslie said, bumps can
    like leslie said, bumps can be normal, so don't fret about the numbers. i went from 20,300 down to 400 and then up again for some reason and now i'm down down down, too. so don't worry! good luck
    <3
  • zinaida
    zinaida Member Posts: 221
    Hi, Leslie! I recommend you
    Hi, Leslie! I recommend you do the CA125 for 2-3 month more. I was dz with 2C ovarian cancer February 2007 and September 2009 my CA125 rise from 8 t0 16, october 25, november 50 and december 600th. December CT scan was clear, but january PET/CT scan (ordered by second opinion doctor) light up 5 spots in my pelvic area. I am OK now, after 8 chemo. I wish your CA125 not will rise any more. But, please, do your CA125 test for next 2-3 month, with best wishes, Zina.
  • kayandok
    kayandok Member Posts: 1,202 Member
    Leslie,
    congratulations on 5 years!!!

    when I recurred my CA125 slowly crept up. It was at 5 for all of my treatments and continued there for 8 months afterwards. Then it started to creep up. 18, 26, 45, 75. My CA125 has always been a good indictor for me. I had a PET taken when it climbed to 45 and a recurrence was confimed.

    You are wise to keep tabs on it, to watch the trend. If it goes down, then you will know it is just a little bump, and could be caused by anything including a cold or something. If it continues up, then you willbe able to nip it in the bud.

    Wishing you the best,
    kathleen
  • curlyq1971
    curlyq1971 Member Posts: 56
    kayandok said:

    Leslie,
    congratulations on 5 years!!!

    when I recurred my CA125 slowly crept up. It was at 5 for all of my treatments and continued there for 8 months afterwards. Then it started to creep up. 18, 26, 45, 75. My CA125 has always been a good indictor for me. I had a PET taken when it climbed to 45 and a recurrence was confimed.

    You are wise to keep tabs on it, to watch the trend. If it goes down, then you will know it is just a little bump, and could be caused by anything including a cold or something. If it continues up, then you willbe able to nip it in the bud.

    Wishing you the best,
    kathleen

    Thanks Everyone!
    Thanks to all who responded to my post:) I know in my heart that this is nothing but a minor blip, but you all know how your head plays games with you!!! When I went to my gyne in June for a 6 month c/u he basically said that I was cured and I don't have to see him for a year...then went to the onc in August and you know the rest, just kinda distressing! My onc is wonderful and I trust him with my life and if he's not worried then I shouldn't be. I will be getting my CA125 rechecked in November, and hoping it is back down to my normal or at least stayed the same:) I have been having hormonal issues this past summer, alot more hot flashes and hair growing where I dont want it to, maybe this has something to do with the minor bump as well. I hope everyone has a fantastic day! Hugs to you all!!!

    Leslie
  • LPack
    LPack Member Posts: 645
    WOW
    Leslie,

    All I can say is WOW!! From 50,000 to under 35 for the past 5 years!! Wow!! I was diagnosed in January 2008 with ca125 1799 and it was down to 6,7, 8 first time around and during maintenance, then went up to 199 thus recurrence, then off that chemo regime and up to 363, now down to 151 right now during this PARP clinical trial.

    Wow!! Congratulations on your 5 year mark. Praise the Lord for His goodness.

    Living for Eternity,
    Libby ☺
  • curlyq1971
    curlyq1971 Member Posts: 56
    LPack said:

    WOW
    Leslie,

    All I can say is WOW!! From 50,000 to under 35 for the past 5 years!! Wow!! I was diagnosed in January 2008 with ca125 1799 and it was down to 6,7, 8 first time around and during maintenance, then went up to 199 thus recurrence, then off that chemo regime and up to 363, now down to 151 right now during this PARP clinical trial.

    Wow!! Congratulations on your 5 year mark. Praise the Lord for His goodness.

    Living for Eternity,
    Libby ☺

    Thank You
    Libby~

    Thank-you Libby! I am glad to hear that your CA125 is going down, that is wonderful news!!! I pray that it keeps going down, down, and down!!! Yep, 50,500 was my number at dx, and I am truly blessed that I have been cancer free for a little over 5 years. I will be having my CA125 rechecked in November and I pray that it is back down to my normal or at least the same..maybe "22" is my new normal, who knows!?!

    I pray that the chemo you are currently on kicks the cancer's butt and that you will be NED indefinately. Sending alot of HUGS your way!!!

    Leslie :)
  • nancy591
    nancy591 Member Posts: 1,027 Member
    ca125
    You were dx at stage 2, that is on your side for sure! That DREADED ca125. A bump in the ca125 can happen for many reasons but, as you already know, it can mean something else too. I think you did all the right things by asking for a repeat ca125 and a scan. I am so happy that the scan came back normal. Do try not to panic and continue to enjoy life as a cancer free women. That is something most of us on here are working hard to achieve. When is your next ca125?
  • curlyq1971
    curlyq1971 Member Posts: 56
    nancy591 said:

    ca125
    You were dx at stage 2, that is on your side for sure! That DREADED ca125. A bump in the ca125 can happen for many reasons but, as you already know, it can mean something else too. I think you did all the right things by asking for a repeat ca125 and a scan. I am so happy that the scan came back normal. Do try not to panic and continue to enjoy life as a cancer free women. That is something most of us on here are working hard to achieve. When is your next ca125?

    ca125
    Good Afternoon Nancy~

    First, I would like to Thank-you for your response, it truly made me feel very reassured! My next recheck on the ca125 is November 18th, and I don't see my onc until February.

    I am glad I found this website, it is nice to talk to people who have walked in your shoes, and know exactly what you are going through. I pray that the current chemo that you are on kills all of the cancer and you achieve NED indefinately!!!! I hope you have a fantastic day and I am sending a bunch of hugs your way!

    Leslie