CEA questions

JanJan63
JanJan63 Member Posts: 2,478 Member
in Colorectal Cancer #1

I see my chemo doctor tomorrow morning and I have some questions for her. One is what my CEA level is. I've never been told what it is. And what am I looking for as far as those levels go? What's good and what's bad? Is it possible to have zero? If I have zero is there any point in doing the mop up chemo?

I tried looking this up on line but can't seem to find any definitive answers. I'm so sick and tired of that, spending time trying to get information about cancer so I can make informed decisions and finding so much controversial and confusing information.

 

Comments

  • neons356
    neons356 Member Posts: 57 Member
    #2
    CEA

    CEA can be an indicator of active disease. I say can be, because in some people the levels are low and stay unchanged. My CEA levels were never high, and never changed. A change in your CEA level is usually an indicater of something going on, and the Docs will look for any change rather than what your average levels are. You've probably read from people here to be careful searching the internet for info and statistics, It can to make you nuts.

                                                      Carl

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #3
    neons356 said:

    CEA

    CEA can be an indicator of active disease. I say can be, because in some people the levels are low and stay unchanged. My CEA levels were never high, and never changed. A change in your CEA level is usually an indicater of something going on, and the Docs will look for any change rather than what your average levels are. You've probably read from people here to be careful searching the internet for info and statistics, It can to make you nuts.

                                                      Carl

    I guess my levels are a non

    Thank you Carl. I guess my levels are a non issue now. I had my bloodwork done this morning and it's not requested on the requisition. Once again my oncologist has let me down. She's got some 'splaining to do tomorrow morning.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Levels

    My levels were always normal so testing is kind of mute for me.  In some people its a very good indicator but for me the CEA level didn't matter.  Don't base the future treatment on levels being normal as it doesn't register to all.  To make one thing clear, don't look on line - the info is outdated and we can give you better inforamation that what is out there as we are going through it.  Good luck

    Kim

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #5
    Annabelle41415 said:

    Levels

    My levels were always normal so testing is kind of mute for me.  In some people its a very good indicator but for me the CEA level didn't matter.  Don't base the future treatment on levels being normal as it doesn't register to all.  To make one thing clear, don't look on line - the info is outdated and we can give you better inforamation that what is out there as we are going through it.  Good luck

    Kim

    Thanks Kim. I'm looking for a

    Thanks Kim. I'm looking for a good excuse to not do the mop up chemo, to be honest. I've only had two treatments and have one coming up on Monday and the side effects from the last one are mostly still with me. The prickliness from the cold is driving me nuts. It's not even winter yet and I have trouble being outside. I'm so tired, I'm having nausea and keep getting dehydrated. I know this isn't that bad but I'm having a really hard time making myself see the point in this.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #6
    JanJan63 said:

    Thanks Kim. I'm looking for a

    Thanks Kim. I'm looking for a good excuse to not do the mop up chemo, to be honest. I've only had two treatments and have one coming up on Monday and the side effects from the last one are mostly still with me. The prickliness from the cold is driving me nuts. It's not even winter yet and I have trouble being outside. I'm so tired, I'm having nausea and keep getting dehydrated. I know this isn't that bad but I'm having a really hard time making myself see the point in this.

    Discuss with your doctor

    As others have said, CEA numbers are not always a good indicator for all patients.  Not all doctors will do it routinely.  Mine was only done once before surgery and then it was still in single digit range even though I have a fair sized tumor.

    You need to discuss your side effects with your doctor.  Perhaps the dosage can be lowered.  Perhaps there are meds for the nausea.

    Only you can determine if the side effects are debilitating enough to warrent stopping.

    Hope you get some good info from your doc.

    Marie who loves kitties

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #7
    CEA

    CEA has always been a good indicator for me, goes up, cancer's here, goes higher cancer's worse, goes down, chemo's working and things are shrinking.  Some of us can tell great with CEA and for others it hardly moves at all.  0-3 can be considered normal, as most people have levels like that all their lives without cancer, also if you are a smoker then your normal CEA range can be anywhere between a 0-5 and be considered normal as the smoking results in a higher level shown.  I think very rarely does any human being show a normal CEA of 0.

    I meant to ask what my CEA was from two weeks ago test but forgot, so when I go to get this chemo disconnected I'll see if the OOU nurse has on their records.

    Winter Marie

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #8
    herdizziness said:

    CEA

    CEA has always been a good indicator for me, goes up, cancer's here, goes higher cancer's worse, goes down, chemo's working and things are shrinking.  Some of us can tell great with CEA and for others it hardly moves at all.  0-3 can be considered normal, as most people have levels like that all their lives without cancer, also if you are a smoker then your normal CEA range can be anywhere between a 0-5 and be considered normal as the smoking results in a higher level shown.  I think very rarely does any human being show a normal CEA of 0.

    I meant to ask what my CEA was from two weeks ago test but forgot, so when I go to get this chemo disconnected I'll see if the OOU nurse has on their records.

    Winter Marie

    Interesting, thank you all

    Interesting, thank you all for your responses. I really appreciate how people take the time to respond to the tbhings we worry about.

    I saw another associate of my doctor's today and really liked her. She was very up front and honest and almost begged me to finish the chemo and explained why. She's also funny. So now I feel better about doing it and have more confidence that it will help me.

  • Phil64
    Phil64 Member Posts: 838 Member
    #9
    herdizziness said:

    CEA

    CEA has always been a good indicator for me, goes up, cancer's here, goes higher cancer's worse, goes down, chemo's working and things are shrinking.  Some of us can tell great with CEA and for others it hardly moves at all.  0-3 can be considered normal, as most people have levels like that all their lives without cancer, also if you are a smoker then your normal CEA range can be anywhere between a 0-5 and be considered normal as the smoking results in a higher level shown.  I think very rarely does any human being show a normal CEA of 0.

    I meant to ask what my CEA was from two weeks ago test but forgot, so when I go to get this chemo disconnected I'll see if the OOU nurse has on their records.

    Winter Marie

    ditto what Winter Marie has

    ditto what Winter Marie has said for my experience.

  • Nana b
    Nana b Member Posts: 3,030 Member
    #10
    Phil64 said:

    ditto what Winter Marie has

    ditto what Winter Marie has said for my experience.

    CEA always a good indicator

    CEA always a good indicator for me.   But the numbers may be different for everyone. Some get it in the hundreds while others in the thousands with same deaseses. It's the monitoring of your level that will tell you what your markers are showing.  I was at 150 with liver mets, then down to 2 for 2.5 years, then went up gradually. I'm over 1000 now, mets in liver, lungs and lymph nodes. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #11
    Nana b said:

    CEA always a good indicator

    CEA always a good indicator for me.   But the numbers may be different for everyone. Some get it in the hundreds while others in the thousands with same deaseses. It's the monitoring of your level that will tell you what your markers are showing.  I was at 150 with liver mets, then down to 2 for 2.5 years, then went up gradually. I'm over 1000 now, mets in liver, lungs and lymph nodes. 

    I forgot to say that the

    I forgot to say that the doctor I saw on Friday said the CEA results can be a good indicator for some people but not for others. She said smokers can show up with around 2.5 even if they don't have cancer.

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #12
    JanJan63 said:

    I forgot to say that the

    I forgot to say that the doctor I saw on Friday said the CEA results can be a good indicator for some people but not for others. She said smokers can show up with around 2.5 even if they don't have cancer.

    Rick's was always 0.15 no

    Rick's was always 0.15 no matter what, so it was obviously a very poor indicator for him.

    take care,

    Cyn

  • Akroger
    Akroger Member Posts: 88
    #13
    My mom's CEA

    After she was diagnosed, my mom's CEA was 2,629 in February 2013, and she had mets to the lungs and liver. Two months of super-aggressive chemo and radiation got her down to 192, and then it kept going down pretty steadily until last November. The doctors found a brain met in December, but it had only gone up by a little bit. She's been doing a lot of chemo switches since her first combo (Folfox) stopped working, and last month her chemo was the highest it's been since the beginning, 520. She's going to get a CT scan to confirm if in fact the cancer has continued to progress (which would indicate that the current chemo is a dud). We've been watching CEA closely because it's usually been a good indicator for my mom, but clearly even in her case relying just on the CEA trend (is it changing, is it low) would have been a mistake. Scans and MRIs are the best means to really be sure.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #14
    stage II

    My personal pov, is that if they really wanted a simple treatment plan that varied with tangible risks, pathologists would stain your tumor's pathology samples with CSLEX1 and CA19-9, maybe a few others.  Then treat with low dose, oral chemo (UFT!) + PSK + cimetidine + low dose aspirin for 12, 18 or 24 months.    

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