some good news

I've been ease dropping on your, now our, discussion board for a few weeks now. I'm new to the board but was diagnosed a year ago, April 30, after a "routine" hysterectomy (a la de Vinci) revealed the source of health issues that had gone un- and mis-diagnosed for years. Debulking of tumors and surgeries on major organs (all clear) and 3b staging followed. I chose to enter into a clinical trial for avastin and randomized on a treatment plan that consisted of weekly taxol, every 3 week carbo (IP) for 6 cycles and of course avastin, which I am still getting every 3 weeks. Grueling, grueling, grueling, as you all know. The protcol also calls for a CT scan every 3 months. The GOOD NEWS I want to share is that the last two scans have been clear. I can do this, we can do this, regardless of the ultimate outcome. Through this, I am being the me I've always wanted.

Also, I want to say that I take great courage from everyone who writes here, especially you all that share your emotional distress and joys, difficulties and hope here. I have extreme lows and have to keep asking myself “do I really want to live”....each time, the answer is yes...AND I know I will continue to ask. Thank you. I am so very grateful to have found you all and will travel this journey with you.

QUESTION: My doc says that the CA125 is not a good indicator for me because my numbers have always been so low...58 pre-tumor op and an average of 6 since. Has anyone ever heard of this?



  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    welcome to the board Linda
    I am sorry we have to meet this way but you are at the right place for advice and sharing your ups and downs. Ca-125 is only an indicater and sometimes not very realiable. Sometimes the test is off and has to be repeated. Wonerful you are in a clinical trial too as some of our poster are also in some. Yes you want to live you are somebodys wife mom dauhter sister, and there are plenty of people who care about you including me!!. Just wondering why it to ok you one year to join but glad you did. Please keep us posted and come back...val oops I mean a few weeks
  • Rookerbird
    Rookerbird Member Posts: 100
    Thumbs Up
    Hello Linda -

    Thumbs up to your post, and to the success of Avastin! I've been in nearly continuous treatment since September 2009: Taxol/Carbo, month of rest, radiation, month of rest, Femara (which I ditched after several months), rest, Doxil. I will push for Avastin if Doxil stops working.

    As to your CA-125 question...yes, low numbers have been my experience. The highest mine ever got was 65 going into surgery. The lowest it ever got was 3.9 after six rounds of chemo followed by six weeks of radiation. When it bopped back up to 16.50 last November, the CT showed two tumors that were the size of a grapefruit. So, my oncologist watches the ups/downs of my CA-125, but relies WAY more on CT scans.

    It's confusing that this disease gives off such divergent CA-125 results for different women. Women with shockingly high numbers might have relatively clear CT scans, while women with low numbers might have tumors everywhere. I think the trend line for individuals is more important than the actual number.

    Here's to TOMORROW!

    10/7/2009 56.20
    10/26/2009 12.50
    11/16/2009 9.50
    12/7/2009 7.80
    12/29/2009 7.70
    1/18/2010 8.90
    2/11/2010 12.80
    5/20/2010 5.70
    6/17/2010 3.90
    7/8/2010 7.50
    9/9/2010 10.40
    10/7/2010 14.10
    11/9/2010 16.50
    12/14/2010 18.90
    1/4/2011 7.30
    2/7/2011 3.90
    3/8/2011 7.10
  • mopar
    mopar Member Posts: 1,972 Member
    That's so good to hear, Linda! And 6 is a super number!

    Yes, my numbers have mostly been 'within normal range', even in the presence of cancer. The only tell-tale sign for me was a consistent rise. The ups and downs never really meant anything, as long as it came back down each time it went up. But the continued upward swing was an indicator for me.

    My recent reading of 28 from 'my normal' of around 12-14 was a shocker. However, one month later it came down to 18 from the 28. My CT and exam were clear, so hoping this was just a 'fluke' or inflammation or infection somewhere. I'm definitely hanging on to that.

    Prayers & Hugs for continued NED!