Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Stage IV withMets - CEA count

Ashley123
Ashley123 Member Posts: 3
edited March 2014 in Colorectal Cancer #1
I was diagnosed with Stage IV Colon with mets to liver in Dec. of 06. Have had chemo since then until 1 month ago (Mar. 08). CEA counts have been steadily on the rise. At the time of colon resection cea count was 330. Dropped to 11 at one point in my chemo. My last cea count was 2357. Has anyone had cea counts this high?

Comments

  • sladich
    sladich Member Posts: 429
    My CEA has never registered anything. I've had mets to the liver and lungs and my CEA stays low. I've never heard of a CEA in the thousands! Best of luck and keep us posted.

    Debbie
  • pamness
    pamness Member Posts: 515
    Ashley - have you confirmed these counts with your oncologist - I have never heard of a count in the 1000's. Most are things like 1.1, 5.5, 60.5. Maybe your hospital is using a different system, but it sounds like you might need to make sure the decimal point is in the right place - ask them to give you a print out. Mine is always around 3.0 = I am ned, I go to Mass General and they do their's a little differently. I think you might have some misinformation.
  • katienavs
    katienavs Member Posts: 88
    Hi Ashley,
    I was diagnosed with stage iv colorectal cancer and my CEA was 247 at diagnosis. so i know that the 330 is definitely possible. i clearly remember hearing of people with cea counts in the high hundreds but i am not sure if i have heard of a count as high as 2357. i'm sure this isn't much help. keep us posted as to what you find out.
    katie
  • lv2scrap
    lv2scrap Member Posts: 44
    Hi Ashley,
    My dad was diagnosed Nov.06 with mets to the lung and bones. His CEA was around 1500. It got as low as 76. Now his oncologist feels we have run out of options. Last I saw his CEA was back to 1600 and that was Dec. 07. He has not had any chemo so I have no idea what the CEA is now. No one has check it. We are now waiting for a clinical trial opening. I posted this same question a while back and couldn't find anyone with the same CEA numbers. I verified with the doctor and he said the numbers were correct and that I was not missing a decimal point. Good luck to you and hope this info was useful.

    lv2scrap
  • Ashley123
    Ashley123 Member Posts: 3
    lv2scrap said:

    Hi Ashley,
    My dad was diagnosed Nov.06 with mets to the lung and bones. His CEA was around 1500. It got as low as 76. Now his oncologist feels we have run out of options. Last I saw his CEA was back to 1600 and that was Dec. 07. He has not had any chemo so I have no idea what the CEA is now. No one has check it. We are now waiting for a clinical trial opening. I posted this same question a while back and couldn't find anyone with the same CEA numbers. I verified with the doctor and he said the numbers were correct and that I was not missing a decimal point. Good luck to you and hope this info was useful.

    lv2scrap

    What really confuses me about these counts are: I feel fine since stopping chemo although my counts continue to rise. My oncologist also feels we have run out of options as I have run through all of the drugs treatments available. My cea counts have run monthly (9-30) 501.0; (10-30) 604.0; (11-30) 708.0; (12-30)857.0; (1-30) 987.0; (2-29) 1357.0; and my last one (3-24) 2357.2. I am just very depressed. Thanks for listening.
  • apache4
    apache4 Member Posts: 272
    Ashley123 said:

    What really confuses me about these counts are: I feel fine since stopping chemo although my counts continue to rise. My oncologist also feels we have run out of options as I have run through all of the drugs treatments available. My cea counts have run monthly (9-30) 501.0; (10-30) 604.0; (11-30) 708.0; (12-30)857.0; (1-30) 987.0; (2-29) 1357.0; and my last one (3-24) 2357.2. I am just very depressed. Thanks for listening.

    What treatments have you had? I am not sure if I have read your info before. My counts were up in the 300's and the lowest they have gotten so far is like 6.7 on chemo. I moved and changed onc's and don't know what they are right now. My thoughts are with you...in the future I will most likely run out of options also. Am on chemo regimen #2 now, only 2 more options to go. 'waiting on CT results Friday to see if this is working. I think it is OK to say that this "sucks"! Keeping a good attitude is always the advice, but I believe in reality also. My new onc. is more of a realist also...he is great in admitting that he also does not want to "do more harm" and carefully monitors my counts and side effects. My best to you.
  • KFalvey
    KFalvey Member Posts: 118
    Hi Ashley,

    When I was first diagnosed in 2/05, Stage 3C, I was freaking out when my CEA was at 10.6 before surgery. My husband told me his boss has CC and his CEA was staying around 1400 or higher and he was on maintainence chemo for years. He went on Friday nights to get it so he could continue working without the side effects bothering him. From what I've read about this disease, some people's cancer do produce much more cea than others. Why did you stop chemo and have you ever had surgery? Maybe you need to get a second opinion for your treatment. It's way too soon to give up. Maybe try a clinical trial; there is one specifically for CEA going on at Duke. I'm thinking about trying that one myself if my cea starts rising again. Thank God it is at 1.0 right now. I have been lucky to be able to have mine surgically removed each time it shows up. Look into alternatives also and change your diet to alkaline foods, no sugar and get as much exercise as you feel up to. It all helps your body fight this beast. Good Luck and God Bless!!
    Kandy