dammit ... not happy

Lori-S
Lori-S Member Posts: 1,277
edited March 2014 in Colorectal Cancer #1
So, today was onc day. blah, blah, blah .... and somemore blah. Then, I asked what my CEA was, he couldn't find it so the nurse tried on the computer in the exam room but, she couldn't locate it. Onc said good-bye. Waiting ... waiting ... went to look for nurse. She had a piece of paper in her hand and said "now don't get upset ... let's wait for the next test it might go down next time" BINGO ... I say "It's ok just tell me" "Well it's up again. It's 15.4" Yikes!!!!!!! she says " don't get worried (with a worried look on her face) it will probably be down next time. It's not unusal for it go up early in treatment. " I reminded her that it has been steadily going up since surgery 7 months ago and told her "I'm ok ... thanks"

HA! I thought it bothered me a little last time when it was up higher than it had ever been. But, it's really bothering me more this time. I had given the rise after the first 2 treatments the benefit of the doubt. Now I just have doubt without the benefit.
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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Lori
    So sorry to hear that the CEA is not cooperating by showing improvement.

    Over the 7 months how much has it gone up? Are the jumps very big? How soon will you get another scan?

    Sorry I seem to have more questions than answers.

    I do hate it though that you got the info from the nurse and didn't have a chance to ask the doc about it and express your concerns. Maybe an e-mail or call to him to get his perspective on it and maybe help ease your mind.

    Keeping fingers crossed for you

    Marie
  • bigCrandy
    bigCrandy Member Posts: 75
    cea
    Hi Lori S., sorry to hear your cea test is rising. I would rather have a cat scan done before worrying about the cea. Sometimes the cea goes up but nothing shows up on the scan or the existing tumors are shrinking, etc. Sometimes the cea goes down but the scan shows tumors or the existing tumors are growing, etc. There are 2 types of cea tests, Bayer- under 2.5(normal) and Roche-under 3.9(normal). My cea (Roche) went up from 6.7 to 7.9 but the scan showed the tumors were stable, in remission. The previous scan 3 months earlier showed the tumors had shrunk 50% yet my cea was up from 6.0 to 6.7. I guess what I am trying to say is cat scans are more reliable than a cea test as to what is actually going on. I do feel your anxiety, I really do. Stay positive and may God Bless you, Randy
  • KathiM
    KathiM Member Posts: 8,028
    I'm sending big hugs....
    CEA was never a good indicator for me...before treatment started, it was .7, after treatment was over, it was .7, 1 year later, it was .6.....

    Can they do a CT scan? See what's going on? Would that put your mind at ease?

    BIG hugs, Kathi
  • pepebcn
    pepebcn Member Posts: 6,331
    KathiM said:

    I'm sending big hugs....
    CEA was never a good indicator for me...before treatment started, it was .7, after treatment was over, it was .7, 1 year later, it was .6.....

    Can they do a CT scan? See what's going on? Would that put your mind at ease?

    BIG hugs, Kathi

    Lori don't get in panic!
    Just wait to the image tests (scan or pet ).When are you having the scan?
    Hugs!
  • Lori-S
    Lori-S Member Posts: 1,277
    pepebcn said:

    Lori don't get in panic!
    Just wait to the image tests (scan or pet ).When are you having the scan?
    Hugs!

    Thanks everyone
    I am scheduled for scans in January. the onc has told me that he expects the CEA to go up before showing on scans that is why we are waiting to do the scans .. that and to see any difference chemo might make. It's just that it worries me more now about what everyone is calling my bone "spots" with the continuous increase. And I have 2 "suspicious" lymph nodes near my liver as well. Oh well. We shall wait and see. I hate waiting.

    OH! And I lost 5 lbs over the holiday eventhough I ate like a piggy.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Scan
    If you're that worried about it, and I know I would be, too, can you arrange to have the scan sooner? I wouldn't wait, if you can convince the powers that be.

    *hugs*
    Gail
  • Jaylo969
    Jaylo969 Member Posts: 824
    Sparks galore!
    Of course it is bothering you...would bother me too...so,when you see the onc for next tx have a nice chat w/him and make him explain what he is or isn't looking at. Sometimes I wonder about these docs..I bet if the shoe were on the other foot s/he'd be demanding answers.( Always heard doctors are the worse patients ).

    In the meanwhile, try to relax. I know, that is a stupid statement, but I DO hope you can relax enough not to make yourself stressed. Stress ain't good.

    Thinking of you and a bunch of sparks are headed your way :)

    P.S. New picture? LOL
  • plh4gail
    plh4gail Member Posts: 1,238
    Lori, sorry about your upset
    Lori, sorry about your upset today. I hope you are able to get a good rest tonight and wake up tomorrow feeling better, which I know would be hard to do.....so for now I'm just wishing for you whatever helps you to feel your best.

    with hugs for you, Gail
  • Lori-S
    Lori-S Member Posts: 1,277
    Jaylo969 said:

    Sparks galore!
    Of course it is bothering you...would bother me too...so,when you see the onc for next tx have a nice chat w/him and make him explain what he is or isn't looking at. Sometimes I wonder about these docs..I bet if the shoe were on the other foot s/he'd be demanding answers.( Always heard doctors are the worse patients ).

    In the meanwhile, try to relax. I know, that is a stupid statement, but I DO hope you can relax enough not to make yourself stressed. Stress ain't good.

    Thinking of you and a bunch of sparks are headed your way :)

    P.S. New picture? LOL

    Yes
    New pic ... it's my stalute to cancer. sticking out my tongue and making little horns on my head. I gotta be meaner and sillier than cancer
  • John23
    John23 Member Posts: 2,122
    Numbers.....

    Personally, I think it's better not to ask or look at "numbers"
    and test results. We didn't know what they were prior to cancer,
    and we didn't worry about them prior to our diagnosis, so
    why now?

    We oughta' gauge our health on how we feel, not how they tell
    us we should be feeling. If you feel healthy, eat, drink, be merry,
    and live life.

    So we have cancer, big deal. We should do what makes us feel
    healthiest...... and.... eat a well rounded diet to help our immune
    system do it's thing.

    Demanding that a doctor tells us the exact reason for the numbers
    on reports, or demanding an accurate prognosis, is a great lesson
    in futility. They have absolutely no way to tell if you're going to
    take a major turn for the worse, or a major turn for the better.

    Just look around this board..... how many have been told that
    their days were numbered, and have outlived their prognosis by
    years? How many have been told that they're "NED", and are
    shattered to learn a few months later, that the cancer is still at it?

    Did worrying about numbers help those in either group?

    Live life, and take the days as they come. Be as healthy as
    you feel, and you just might be healthier for it!

    Really!

    John
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    yuk news keep your chin up and smile
    be interesting what the onc says about your cea and bringing scans forward.
    I don't even know what my cea is. must be bad so they don't tell me. LOL
    sometimes ignorance is bliss.
    i will ask my onc nurse my CEA score for my 3rd folfox this tuesday what my cea is.

    as we agreed last night on another thread. relax , breathe, relax if you can.
    however its so much easier said then done. I hope I can relax if or when I get tested with bad news.

    its just great to be alive, enjoy today. i took my 5 year old to see santa yesterday. he loved it. he showed santa a lego toy from this catalog he has been carrying around for days. I find the greatest satisfaction in the simplest things.

    Pete
  • idlehunters
    idlehunters Member Posts: 1,787
    plh4gail said:

    Lori, sorry about your upset
    Lori, sorry about your upset today. I hope you are able to get a good rest tonight and wake up tomorrow feeling better, which I know would be hard to do.....so for now I'm just wishing for you whatever helps you to feel your best.

    with hugs for you, Gail

    Lori
    Yep.... I can see why your mind is spinning. Did I miss something or is it correct that you have not had a scan since surgery??? How long ago was that..like 7 months? So at this point you don't really know if CEA is a good indicator for you or not? I would want a scan..NOW! I just could not wait no more. Maybe I just don't know the whole picture and this is just me..... I am so very inpatient. I will be sending good vibes your way and praying that all is ok. I would say don't worry but I know you will be. <<<HUGGGSSS>>> There...that help any?? Take care.

    Jennie
  • Lori-S
    Lori-S Member Posts: 1,277

    Lori
    Yep.... I can see why your mind is spinning. Did I miss something or is it correct that you have not had a scan since surgery??? How long ago was that..like 7 months? So at this point you don't really know if CEA is a good indicator for you or not? I would want a scan..NOW! I just could not wait no more. Maybe I just don't know the whole picture and this is just me..... I am so very inpatient. I will be sending good vibes your way and praying that all is ok. I would say don't worry but I know you will be. <<<HUGGGSSS>>> There...that help any?? Take care.

    Jennie

    Jennie
    My last scan was 6 weeks ago. Oct 15th. I had a couple before surgery, 1 one week after and 1 one month after. That's because of the bone spots that everyone is watching. Another reason for waiting until Jan. is that we had so many scans in the last 7 months.

    Thanks for the good vibes and prayers. I was just caught off guard as I really expect at the very least a stable number but, hoping for a lower number. argh!
  • Lori-S
    Lori-S Member Posts: 1,277
    John23 said:

    Numbers.....

    Personally, I think it's better not to ask or look at "numbers"
    and test results. We didn't know what they were prior to cancer,
    and we didn't worry about them prior to our diagnosis, so
    why now?

    We oughta' gauge our health on how we feel, not how they tell
    us we should be feeling. If you feel healthy, eat, drink, be merry,
    and live life.

    So we have cancer, big deal. We should do what makes us feel
    healthiest...... and.... eat a well rounded diet to help our immune
    system do it's thing.

    Demanding that a doctor tells us the exact reason for the numbers
    on reports, or demanding an accurate prognosis, is a great lesson
    in futility. They have absolutely no way to tell if you're going to
    take a major turn for the worse, or a major turn for the better.

    Just look around this board..... how many have been told that
    their days were numbered, and have outlived their prognosis by
    years? How many have been told that they're "NED", and are
    shattered to learn a few months later, that the cancer is still at it?

    Did worrying about numbers help those in either group?

    Live life, and take the days as they come. Be as healthy as
    you feel, and you just might be healthier for it!

    Really!

    John

    John
    you are so right. worrying just takes up time and space. Am I'm not really a worrier. I was just caught off guard. waaaaaaaaaaaaaah
  • Lori-S
    Lori-S Member Posts: 1,277

    yuk news keep your chin up and smile
    be interesting what the onc says about your cea and bringing scans forward.
    I don't even know what my cea is. must be bad so they don't tell me. LOL
    sometimes ignorance is bliss.
    i will ask my onc nurse my CEA score for my 3rd folfox this tuesday what my cea is.

    as we agreed last night on another thread. relax , breathe, relax if you can.
    however its so much easier said then done. I hope I can relax if or when I get tested with bad news.

    its just great to be alive, enjoy today. i took my 5 year old to see santa yesterday. he loved it. he showed santa a lego toy from this catalog he has been carrying around for days. I find the greatest satisfaction in the simplest things.

    Pete

    Pete
    Yep, it'ss the simple things that can really be the best. Taking my dog for her walk no matter how I feel always works wonders for me. All my kids are grown. Somedays the thought of having a 5 year old to take to see Santa sounds so wonderful. Your experience really made me smile. Enjoy!
  • Lori-S
    Lori-S Member Posts: 1,277

    Dear Lori
    So sorry to hear that the CEA is not cooperating by showing improvement.

    Over the 7 months how much has it gone up? Are the jumps very big? How soon will you get another scan?

    Sorry I seem to have more questions than answers.

    I do hate it though that you got the info from the nurse and didn't have a chance to ask the doc about it and express your concerns. Maybe an e-mail or call to him to get his perspective on it and maybe help ease your mind.

    Keeping fingers crossed for you

    Marie

    Hi Marie
    My CEA was 9.7 before surgery and at time of DX. It went down to 2.3 after surgery amd has been climbing consistently ever since. I will go in for chemo on Monday and will talk to the onc then. Heres the numbers

    05/14/10       9.7
    05/18/10      Surgery
    05/22/10       2.3
    08/11/10       4.6
    09/15/10       5.6
    10/13/10       6.8
    10/22/10       8.3
    11/04/10       8.9
    11/18/10       11.3
    12/02/10       15.4
  • Nana b
    Nana b Member Posts: 3,030
    Lori-S said:

    Pete
    Yep, it'ss the simple things that can really be the best. Taking my dog for her walk no matter how I feel always works wonders for me. All my kids are grown. Somedays the thought of having a 5 year old to take to see Santa sounds so wonderful. Your experience really made me smile. Enjoy!

    Hey, silliness works! I
    Hey, silliness works! I had a pic of me in pigtails while undergoing chemo... Keep it up!!

    Raquel
  • mommyof2kds
    mommyof2kds Member Posts: 519
    Nana b said:

    Hey, silliness works! I
    Hey, silliness works! I had a pic of me in pigtails while undergoing chemo... Keep it up!!

    Raquel

    I know that it is easier
    I know that it is easier said than done. But try to not focus on the number, the scans are more reliable. HUgs..
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Lori-S said:

    Hi Marie
    My CEA was 9.7 before surgery and at time of DX. It went down to 2.3 after surgery amd has been climbing consistently ever since. I will go in for chemo on Monday and will talk to the onc then. Heres the numbers

    05/14/10       9.7
    05/18/10      Surgery
    05/22/10       2.3
    08/11/10       4.6
    09/15/10       5.6
    10/13/10       6.8
    10/22/10       8.3
    11/04/10       8.9
    11/18/10       11.3
    12/02/10       15.4

    Thanks for sharing
    I can certainly see why these numbers give you concern...not in how high but in the trend, particularly over the last month.

    Am hoping that some of this can be caused by the killing off of cancer cells rather than any growth.

    Hope that your doc can give you some words of encouragement and comfort on Monday.

    Hugs,

    Marie
  • geotina
    geotina Member Posts: 2,111
    Lori:
    It is just a number and part of the whole picture. Your doc is probably wanting to wait until January for a scan so he can have a better picture of things, comparing the new scan to one taken several months ago will give him that clearer picture he needs. George started out in the high 800's, came down, down, to around 30, went up, came down again to around 17, then up agin to the 20's. Now it has more than doubled so we know that it is no longer stable but on the move. Had CT, PET/CT and liver biopsy in the last week or so and will find out Monday where we are and what we need to do. Back to stronger chemo for George.

    We have been at this for 18 months and the one thing I have learned is it constantly twists and turns, ups and downs, so for now just keep doing what you are doing. Chemo is cumulative so you need to give it time to do its job and as a result your numbers can go up and down for no apparent reason.

    You are on top of things so that is good.

    Take care - Tina