Bad News ? CEA Flare?

peterz54
peterz54 Member Posts: 341
edited March 2012 in Colorectal Cancer #1
Stage IV with 12 threatments planned. folfox w/avastin

after 6th chemo CEA is up from just over 300 to just over 500. had leveled at about 300 after 2nd treatment and stayed there until now. pre chemo was 1800.

has anyone had a good outcome yet seen their CEA values go up like this during treatment?

just got this news and have not had a chance to discuss with Dr

Comments

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #2
    Could be a CEA "flare"-
    there are studies that show a sudden uptick in numbers (as opposed to a slow, steady climb) indicates the death of cancer cells. They dump a lot of the protein being measured by the test into the blood when they are being killed off in quantity by the chemo.
    Here's a link you could take a look at:
    http://fightcolorectalcancer.org/research_news/2009/11/cea_flares_during_chemo_dont_mean_cancer_progression

    Hope this turns out to apply to your case! Ann

    PS I had a dog named Snowy who could be a twin to the one in your picture...
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    CEA
    CEA varies SO much from person to person. I'm stage IV CC, dx 8 years ago. My CEA has never been over 9.4. For ME, that's real high. As of my last test two weeks ago or so it was down to 1.9. There are too many variables and factors that can cause it to rise. Why are you (and others) in the triple digits and I've yet to hit double digits? I've had a colon resection, liver resection, three lung operations, four RFAs yet when most of that was happening my CEA was between 6-8. Makes no sense (to me at least).

    I think it's good that it dropped from 1800 to 300 for sure, the rise to 500 could be an anomaly. I do know that FOLFOX/Avastin got me from being inoperable to operable after 6 months (12 treatments) so I think you're on the right path...

    Don't make yourself crazy with this, if its really bugging you then talk to an expert on YOU. Hopefully your oncologist.
    We all have different stories that may or may not be of significance to your case.
    -phil
  • peterz54
    peterz54 Member Posts: 341
    #4
    PhillieG said:

    CEA
    CEA varies SO much from person to person. I'm stage IV CC, dx 8 years ago. My CEA has never been over 9.4. For ME, that's real high. As of my last test two weeks ago or so it was down to 1.9. There are too many variables and factors that can cause it to rise. Why are you (and others) in the triple digits and I've yet to hit double digits? I've had a colon resection, liver resection, three lung operations, four RFAs yet when most of that was happening my CEA was between 6-8. Makes no sense (to me at least).

    I think it's good that it dropped from 1800 to 300 for sure, the rise to 500 could be an anomaly. I do know that FOLFOX/Avastin got me from being inoperable to operable after 6 months (12 treatments) so I think you're on the right path...

    Don't make yourself crazy with this, if its really bugging you then talk to an expert on YOU. Hopefully your oncologist.
    We all have different stories that may or may not be of significance to your case.
    -phil

    CEA units
    phil, the units from our lab report are ng/ml (nanograms per milliliter). The normal value in same usits is < 5, i think. so you appear to have very low values..
  • peterz54
    peterz54 Member Posts: 341
    #5
    annalexandria said:

    Could be a CEA "flare"-
    there are studies that show a sudden uptick in numbers (as opposed to a slow, steady climb) indicates the death of cancer cells. They dump a lot of the protein being measured by the test into the blood when they are being killed off in quantity by the chemo.
    Here's a link you could take a look at:
    http://fightcolorectalcancer.org/research_news/2009/11/cea_flares_during_chemo_dont_mean_cancer_progression

    Hope this turns out to apply to your case! Ann

    PS I had a dog named Snowy who could be a twin to the one in your picture...

    link & Snowy
    thanks for the link Ann. now that you mention, I have heard of the dumping of proteins as being a possible factor.

    Sophie, in the picture, is my favorite of our clan. crazy sweet, and exceptionally bright.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    peterz54 said:

    CEA units
    phil, the units from our lab report are ng/ml (nanograms per milliliter). The normal value in same usits is < 5, i think. so you appear to have very low values..

    "you appear to have very low values.."
    WOW, you just met me and sized me up pretty well. I'm impressed! ;-)

    My point is that even with being stage IV and over 60% of my liver had to be removed, along with 6-8" of my colon, lung mets, etc, my CEA never got above 8.4. Some people have high CEA, some don't. I don't believe it's a totally accurate barometer of one's "health".
    Here's part of my trend. On Dec 17, 2011 I had my 4th RFA? My lowest was 1.2 highest was 8.4 (not 9) although I have online access to medical records back to 6/2006

    "Results cannot be interpreted as evidence of the presence or absence of malignant disease.
    Assay info: IEMA,Tosoh AIA.
    Results cannot be used interchangeably with any other method."

    02/22/2012 1.9 ng/ml

    01/25/2012 2.1 ng/ml

    01/11/2012 2.2 ng/ml

    12/14/2011 3.1 ng/ml

    11/23/2011 3.6 ng/ml

    11/02/2011 6.8 ng/ml
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #7
    peterz54 said:

    link & Snowy
    thanks for the link Ann. now that you mention, I have heard of the dumping of proteins as being a possible factor.

    Sophie, in the picture, is my favorite of our clan. crazy sweet, and exceptionally bright.

    A friend of mine recently had the exact same situation as you...
    had a sudden flare in CEA during treatment, but then she had a PET and everything looks good. The numbers are back down again too, from several hundred to 2.8 on her last test. As Phil says, these numbers aren't always good indicators, but it looks like that in your case they have been, and the study I linked you to suggests that these flares are pretty common, at least for those in whom CEA is in fact a good indictor of disease progression. Hoping the best for you!
  • peterz54
    peterz54 Member Posts: 341
    #8
    annalexandria said:

    A friend of mine recently had the exact same situation as you...
    had a sudden flare in CEA during treatment, but then she had a PET and everything looks good. The numbers are back down again too, from several hundred to 2.8 on her last test. As Phil says, these numbers aren't always good indicators, but it looks like that in your case they have been, and the study I linked you to suggests that these flares are pretty common, at least for those in whom CEA is in fact a good indictor of disease progression. Hoping the best for you!

    have looked at CEA Flare
    it seems the flare phenomena is when CEA rises temporarily near the beginning of treatment. In my wife's case, CEA went down to 300 after after second treatment and stayed flat for 3 cycles. then back to 500 just before 7th, so th increase was not at beginning but 3 months after start of chemo. did not measure before 6th so possible the peak of the flare was missed or that it is not a flare and we are seeing a rise. PET/CT scan next week may clarify. I am still researching though...thanks
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    peterz54 said:

    have looked at CEA Flare
    it seems the flare phenomena is when CEA rises temporarily near the beginning of treatment. In my wife's case, CEA went down to 300 after after second treatment and stayed flat for 3 cycles. then back to 500 just before 7th, so th increase was not at beginning but 3 months after start of chemo. did not measure before 6th so possible the peak of the flare was missed or that it is not a flare and we are seeing a rise. PET/CT scan next week may clarify. I am still researching though...thanks

    Not to Downplay This Peter...
    But have you spoken to the oncologist at all? I know that my Onc wishes her patients did NOT have access to their CEA so easily. Often (not always) it's not a accurate representation of what's going on with the cancer. I just don't like seeing people get too worried when it might not be warranted. Also, the Internet will eventually give one an answer that one likes whether it's true or not.
    I hope things are OK and that you get to the bottom of it without too much angst.
    -p
  • peterz54
    peterz54 Member Posts: 341
    #10
    PhillieG said:

    Not to Downplay This Peter...
    But have you spoken to the oncologist at all? I know that my Onc wishes her patients did NOT have access to their CEA so easily. Often (not always) it's not a accurate representation of what's going on with the cancer. I just don't like seeing people get too worried when it might not be warranted. Also, the Internet will eventually give one an answer that one likes whether it's true or not.
    I hope things are OK and that you get to the bottom of it without too much angst.
    -p

    spoken to oncologist?
    yes I have Phil. the news just came in yesterday and I communicated with my wife's Onc last night and also have been looking at studies such as the one Ann referenced. Flares usually happpen within 4 to 6 weeks according to one study. Study also indicated that those with true flares also have shorter survival thna most, although better than patients with increasing CEA. Onc agreed the CEA can vary but in this case is concerned because of the still the steady value of about 300 over a 4 to 6 week period (after dropping from 1800) prior to coming back up to 500. Onc also said she expects the PET/CT next week will clarify what is happening.

    as for internet, except for a couple of forums like this where I get clues to research I spend almost all my time looking at professional journals or studies archived at NIH. no .com sites with recycled and out of date or speculative material.

    thanks for the advise

    p
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #11
    peterz54 said:

    spoken to oncologist?
    yes I have Phil. the news just came in yesterday and I communicated with my wife's Onc last night and also have been looking at studies such as the one Ann referenced. Flares usually happpen within 4 to 6 weeks according to one study. Study also indicated that those with true flares also have shorter survival thna most, although better than patients with increasing CEA. Onc agreed the CEA can vary but in this case is concerned because of the still the steady value of about 300 over a 4 to 6 week period (after dropping from 1800) prior to coming back up to 500. Onc also said she expects the PET/CT next week will clarify what is happening.

    as for internet, except for a couple of forums like this where I get clues to research I spend almost all my time looking at professional journals or studies archived at NIH. no .com sites with recycled and out of date or speculative material.

    thanks for the advise

    p

    Glad to hear this
    You sound like you have things covered. Some people think since they saw someting on the Internet it must be true.
    You DID sound like you were being cautious, I'm just being me.
    :-)
    I hope you get good results from scans next week
    -p
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #12
    PhillieG said:

    CEA
    CEA varies SO much from person to person. I'm stage IV CC, dx 8 years ago. My CEA has never been over 9.4. For ME, that's real high. As of my last test two weeks ago or so it was down to 1.9. There are too many variables and factors that can cause it to rise. Why are you (and others) in the triple digits and I've yet to hit double digits? I've had a colon resection, liver resection, three lung operations, four RFAs yet when most of that was happening my CEA was between 6-8. Makes no sense (to me at least).

    I think it's good that it dropped from 1800 to 300 for sure, the rise to 500 could be an anomaly. I do know that FOLFOX/Avastin got me from being inoperable to operable after 6 months (12 treatments) so I think you're on the right path...

    Don't make yourself crazy with this, if its really bugging you then talk to an expert on YOU. Hopefully your oncologist.
    We all have different stories that may or may not be of significance to your case.
    -phil

    Your treatments
    Hi Phil,

    I'm just guessing here about why your counts are so low and you've had so many surgeries as opposed to others of us. I'll give a brief run down of my case before getting to my theory.

    After radiation, I did not need any colon surgery (except to relieve the tension in my rectum after it went into spasm) and my doctors have all said that I'm not a candidate for liver replacement or surgery of any sort.

    Back in June 2011, I had gone 2 months w/o treatment because of a very low white blood cell count. When I resumed treatment, my count was 1997 and after we started, it dropped down to the mid 30s over several months. My new drug was Victibix (sp?) and I did get the rash and terrible skin problems so my Onc decided to take me off one of the drugs and my count started to go back up. After a couple of treatments, we went back on it and my count started to drop and then went up again. That's when he re-introduced Ironetekan (sp? again)and again my CEA is in yoyo mode. It went down then jumped up again. I was on vacation last week so I missed a treatment which I will get on Tuesday and I fully expect my count (currently 202) to jump up close to 300.

    Okay, so my theory is that because your count has been so low that you must have hit Stage IV very soon before your dx and that made you more susceptible to various treatments which -- because mine was a late dx -- I was never a candidate for. My sister has offered to donate a lobe of her liver but my Onc said that my cancer would just infect that as well as it would if they could give me whole new liver. I'll ask my Onc about this theory next week when I see him and you might want to do the same. Who knows, sixteen days (and counting) without chemo might have returned some semblance of intelligence to my chemobrain.

    Ray
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #13
    Doc_Hawk said:

    Your treatments
    Hi Phil,

    I'm just guessing here about why your counts are so low and you've had so many surgeries as opposed to others of us. I'll give a brief run down of my case before getting to my theory.

    After radiation, I did not need any colon surgery (except to relieve the tension in my rectum after it went into spasm) and my doctors have all said that I'm not a candidate for liver replacement or surgery of any sort.

    Back in June 2011, I had gone 2 months w/o treatment because of a very low white blood cell count. When I resumed treatment, my count was 1997 and after we started, it dropped down to the mid 30s over several months. My new drug was Victibix (sp?) and I did get the rash and terrible skin problems so my Onc decided to take me off one of the drugs and my count started to go back up. After a couple of treatments, we went back on it and my count started to drop and then went up again. That's when he re-introduced Ironetekan (sp? again)and again my CEA is in yoyo mode. It went down then jumped up again. I was on vacation last week so I missed a treatment which I will get on Tuesday and I fully expect my count (currently 202) to jump up close to 300.

    Okay, so my theory is that because your count has been so low that you must have hit Stage IV very soon before your dx and that made you more susceptible to various treatments which -- because mine was a late dx -- I was never a candidate for. My sister has offered to donate a lobe of her liver but my Onc said that my cancer would just infect that as well as it would if they could give me whole new liver. I'll ask my Onc about this theory next week when I see him and you might want to do the same. Who knows, sixteen days (and counting) without chemo might have returned some semblance of intelligence to my chemobrain.

    Ray

    Hi Ray
    When I was dx I was told I had it for a while. that's why my first onc said "what's the hurry with starting chemo, you're had cancer for a while" and that's why I found another onc.

    My liver had many tumors in it including a rather large one right next to the hepatic artery. I did the chemo first (FOLFOX w/ Avastin) for 6 months which shrunk that big tumor enough so I became operable. Between 60-70-% of my liver had to be resected. I also had mets in my lungs by that time. I think if I were newly stage IV that I wouldn't have been so messed up inside.

    I think that the reason I have had good success is part luck, but mainly good doctoring. Dr Kemeny is one of the top oncologists for this type of cancer. Dr K realized that the colon issue wasn't as important as shrinking the liver tumors so she focused treatment there. I had a very good response to Avastin, I've also had a very good response to Erbitux although I went through the nasty rash stuff. I hurt bad for a while. I still get toe issues and finger issues but not many face issues. I've been on Erbitux since 2005 too which is a long time to have a treatment still be effective. Again, the luck part...

    It's an interesting theory Ray, if I get a chance I'll ask her. those who have her know what the "if I get a chance" thing means...
    ;-)
    I hear you with the chemo-brain break. I've been off heavy duty chemo for a while, I really dislike how it messes with the brain though.
    This is part of the mystery of cancer. We can appear to have similar situations but our reaction to treatments vary so much. What cures one of us can kill another one.
    I hope things go well at your next visit
    -p

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