What do you think?

midnte0708
midnte0708 Member Posts: 166
edited March 2014 in Colorectal Cancer #1
I have not posted in a very long time but I read this board almost daily.
Here's my story.
Father diagnosed with very large liver mets Aug05. Immediately started chemo FOLFIRI+ Avastin every other week for the last year only missing one treatment due to low WBC count for sinus infection in March06. Works full time and resumes normal life except for some minor side effect
Initial CEA was 170 in Aug 05. After a few months of chemo CEA went down to 76. All cat scans were "no Change" except for this past March06 there was some shrinkage...maybe 20%.
Now the July scan was back to "no Change."...doc says still great news...OK well 3 weeks after that scan the CEA count went back to 120 from a steady 70's.
Doc ordered another cat for next week and said it doesn't always mean anything bad.
I know CEA does not always mean anything but if it went from initial 170 to 76 for 8 months then shoots up to 120 it is sometimes a good indicator of something bad.
Liver tumor mass is 17cm x 11cm X 10cm after the shrinkage.
Now I'm scared to death that the rising CEA means something bad...especially since last scan showed no more shrinkage.
What do you think???? any advice would be appreciated.
Thanks,
Sue

Comments

  • oneagleswings
    oneagleswings Member Posts: 425 Member
    #2
    Hi Sue:
    My husband has multiple liver mets and here in Canada they do not monitor the CEA so we have to just wait for the regularily scheduled CT scans...I have read from others on this board that there are a huge variety of reasons the CEA goes up (and not related to cancer growth) so try not to worry..just keep on and see what the CT scan brings...(hopefully the same STABLE result.
    Bev
  • midnte0708
    midnte0708 Member Posts: 166
    #3
    oneagleswings said:

    Hi Sue:
    My husband has multiple liver mets and here in Canada they do not monitor the CEA so we have to just wait for the regularily scheduled CT scans...I have read from others on this board that there are a huge variety of reasons the CEA goes up (and not related to cancer growth) so try not to worry..just keep on and see what the CT scan brings...(hopefully the same STABLE result.
    Bev

    Thanks Bev,

    I know...I keep reminding myself there may be many reasons for the CEA to change but his has been so stable it makes me nervous. It seems like ANY change in his doctors visits makes me panic.
    Thanks,
    Sue
  • chynabear
    chynabear Member Posts: 481 Member
    #4
    midnte0708 said:

    Thanks Bev,

    I know...I keep reminding myself there may be many reasons for the CEA to change but his has been so stable it makes me nervous. It seems like ANY change in his doctors visits makes me panic.
    Thanks,
    Sue

    "started chemo FOLFIRI+ Avastin"

    This is usually a huge reason for CEA to rise. I know, just one more thing for us to worry about, right?

    Hang in there until you get some definitive answers on the cause.

    I pray it is nothing more than chemo causing the rise and for either shrinkage or stability.

    Take care,

    Patricia
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    I think that any post with the word 'shrinkage' in it calls for a......
    YEA YEA YEA YEA NAKED HAPPY DANCE!!!!!!

    (The beast LOVES people being down and sad....don't give it that victory...)

    Hugs, Kathi
  • midnte0708
    midnte0708 Member Posts: 166
    #6
    chynabear said:

    "started chemo FOLFIRI+ Avastin"

    This is usually a huge reason for CEA to rise. I know, just one more thing for us to worry about, right?

    Hang in there until you get some definitive answers on the cause.

    I pray it is nothing more than chemo causing the rise and for either shrinkage or stability.

    Take care,

    Patricia

    Thanks Patricia.
    He actually started the FOLFIRI+ Avastin chemo over one year ago and has been on exact same dose all along.
    The tumor mass and CEA was stable 3weeks ago so it's weird that the CEA almost doubled 3weeks later. Of course the doc mentioned it may mean nothing. I'm scared of addition mets though.
    Sue
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #7
    I know the CEA sucks doesn't it? I have been told by my onc nurse that your CEA can rise from being around a campfire or a barbeque. Has your father been camping, sitting around a bonfire, BBQ grilling, etc. lately? I don't know if that would account for such a large rise, but maybe? I guess you just have to keep monitoring it and try to put it out of your mind unless something shows up on the CT scans. A continuous rise can indicate a recurrence, but I don't know what the deal is if someone has tumors and is not NED. Anyway, just wait for the CT scan. I know it is the pits, but what can you do besides worry? Try to put it out of your mind for now.
    Take care,
    Susan.
  • pepperdog
    pepperdog Member Posts: 96
    #8
    KathiM said:

    I think that any post with the word 'shrinkage' in it calls for a......
    YEA YEA YEA YEA NAKED HAPPY DANCE!!!!!!

    (The beast LOVES people being down and sad....don't give it that victory...)

    Hugs, Kathi

    Kathi, I absolutely, positively LOVE your persistent "the glass is half full" attitude. You go girl!
  • vinny3
    vinny3 Member Posts: 928 Member
    #9
    The CEA is not a real reliable test but it is concerning when the level drops and then goes up again, especially at the high levels he is at. Did they say anything as to whether or not the liver mets were resectable? If so that seems to be the treatment that has the best results for survival of one with liver mets. Otherwise that are some treatments where the chemo is sent directly into the liver.

    Good luck, we will pray for you and your father.
    ****

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