Feeling very sad after news today!

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ittapp
ittapp Member Posts: 383 Member
edited March 2014 in Colorectal Cancer #1
Hey everyone, I went to scheduled chemo today,I go to the hospital to get my infusions (not Onc. office) I had my CEA tested today and it is up to 22 from 10.5 4 weeks ago. I even had a scan in Oct. and it showed everything shrinking and dieing off. I also have had chemo since then. I am so confused!! It really knocked the wind out of me and my husband. We were feeling so positive and thinking the chemo was working and then BAM! bad news. I have not talked to my Onc. yet, he will call me tomorrow after seeing the report. Just feeling sad today and not knowing what to think. My husband's face is so sad today and it breaks my heart. This news just had to come before Thanksgiving and seeing all of family and them asking how are you doing? I really wanted good news to share as they are all so affected by my DX.If you have any information to share regarding CEA's or if this has happened to you please reply. God Bless, Patti

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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Of Interest to my KS
    Hello Dearest Patti

    I thought about this - of course it saddens me too and I keep thiking why is the CEA rising?

    But then it dawned on me - I remember my oncologist telling me that my CEA alot of times went up during my chemo cyles and after them. You think they are going to go down with each cycle, right?

    Well, that's not always the case - sometimes your CEA levels can rise even doing chemotherapy, because when the cells are dying off, they release that protein into the blood system and the CEA level shows as an INCREASE.

    Subsequent blood labs should tell us where we are at going forward.

    Of course, meeting with your oncologist should reveal some answers as well.

    So, right now I'm going with CEA rising because tumors are dying, so you and your husband relax until you see the doctor.

    I have not been logged on more than once and just had a little surgery this morning and just got in a couple of hours ago.

    I decided to logon and then I see your post - well, I just had to respond - it was meant to be!

    Hang in there KS - and you know what you've still got good news for the relatives - you are living and will be able to celebrate Thanksgiving with all of them and your family too.

    I'm still of the opinion that things are going as well - on course as the Captain says.

    Take care and you are constantly in my thoughts :)

    -Craig
  • ittapp
    ittapp Member Posts: 383 Member
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    Sundanceh said:

    Of Interest to my KS
    Hello Dearest Patti

    I thought about this - of course it saddens me too and I keep thiking why is the CEA rising?

    But then it dawned on me - I remember my oncologist telling me that my CEA alot of times went up during my chemo cyles and after them. You think they are going to go down with each cycle, right?

    Well, that's not always the case - sometimes your CEA levels can rise even doing chemotherapy, because when the cells are dying off, they release that protein into the blood system and the CEA level shows as an INCREASE.

    Subsequent blood labs should tell us where we are at going forward.

    Of course, meeting with your oncologist should reveal some answers as well.

    So, right now I'm going with CEA rising because tumors are dying, so you and your husband relax until you see the doctor.

    I have not been logged on more than once and just had a little surgery this morning and just got in a couple of hours ago.

    I decided to logon and then I see your post - well, I just had to respond - it was meant to be!

    Hang in there KS - and you know what you've still got good news for the relatives - you are living and will be able to celebrate Thanksgiving with all of them and your family too.

    I'm still of the opinion that things are going as well - on course as the Captain says.

    Take care and you are constantly in my thoughts :)

    -Craig

    Craig, when I was writing
    Craig, when I was writing this I was so hoping you would read it and respond, and you did! you always make me feel better.It's funny, my brother who originally found this site for me asked me 5 minutes before I wrote this post how Sundance was doing, and I said that he has not been able to post much because of pain. I have missed you Craig and hope to hear from you again soon. Thank you so much for your calming words, God Bless, Patti
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
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    Hi Patti,I am sure you and
    Hi Patti,I am sure you and your husband have lots of concerns of this rising CEA.chemotherapy and radiation therapy can themselves cause a rise in CEA due to death of tumor cells and release of CEA into the blood stream but that rise is typically temporary.The oncologist may give you some explanation and see if this is his concern.Take care.Hugsss.
  • Patteee
    Patteee Member Posts: 945
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    Hey
    The first CEA I had done

    Hey
    The first CEA I had done was like at the end of chemo- my colorectal surgeon had it done as part of the battery of tests before my take down surgery. She told me it was like 4 (can't remember exactly) and it probably wasn't a big deal but to make sure I told my oncologist about it. So a couple of weeks later I told my oncologist- he was confused, "why did she do a CEA??" (I dunno?) He totally nixed the results and said quite sternly, "I never do a CEA when a patient is getting chemo, that chemo can and does schew the results!!" I know there are plenty of folks here who get them throughout chemo, so guessing a lot of docs don't agree with mine- but I wanted you to know, it isn't a foolproof way of detecting a reoccurance, that chemo can screwup the numbers.
  • KathiM
    KathiM Member Posts: 8,028 Member
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    CEA can do strange things....
    Can rise for other reasons. I would try to stay calm, and see what your doctor says. I found it was sort of like when I was working at losing weight...if I weighed myself too often, I would get depressed because of the fluxuations....

    For me, CEA was NOT a good marker...as was the breast cancer marker, as well...

    I am sending BIG hugs....

    Hugs, Kathi
  • KATE58
    KATE58 Member Posts: 299
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    Hi PATTY!
    I would not worry

    Hi PATTY!

    I would not worry too much about cea levels, my doctor stopped taking them after he realized that no matter whether I was in remission or in the middle of a round of chemo.they NEVER
    changed ! So I haven't had one in 3 years. the ct scans and pet scans are the big tells.It's easy to get discouraged. I was given 3 months to live 4 years ago ,then when I started getting better, they couldn't believe it! it's been 4 years and they just told me no one else (with MY same prognosis- 4th stage metastatic) lasted more than 22 months. If I can beat the odds ANYONE CAN!!! CHIN UP-YOU CAN DO IT TOO!!! :-) Good luck
    Kate
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    I know it's easier
    I know it's easier said than done but please don't get too worked up by the CEA numbers. The true measure of how the chemo is working for you is your CT scan and not the CEA. My oncologist has told me as well that the numbers will jump around and that they can actually spike up as the tumors die (as Craig as already posted about) because there is more expression of the tumor marker in the blood.

    You are in my thoughts and prayers,
    Amy
  • donnare
    donnare Member Posts: 266
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    Hi Patti
    Don't have much to offer regarding CEA, but just wanted to say I'm sorry you and your husband are feeling so sad. Hopefully you will have more good news soon. You're both in my prayers!

    Be well,
    Donna
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Woah There Kiddo
    Don't get too depressed about your CEA. I know my CEA was at one point when they first found out I had cancer and then I started chemo and it had risen while I was on chemo. Some doctors don't put a lot of stock into the CEA test as it is can be not very reliable especially if you have had surgery, chemo, smoke, stress. Since quitting chemo my CEA has gone down and I just had a scan in October and I was clear. Don't stress too much, but call your doctor and see what they feel the situation is. CEA's can be very unstable at times.

    Kim
  • ittapp
    ittapp Member Posts: 383 Member
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    Woah There Kiddo
    Don't get too depressed about your CEA. I know my CEA was at one point when they first found out I had cancer and then I started chemo and it had risen while I was on chemo. Some doctors don't put a lot of stock into the CEA test as it is can be not very reliable especially if you have had surgery, chemo, smoke, stress. Since quitting chemo my CEA has gone down and I just had a scan in October and I was clear. Don't stress too much, but call your doctor and see what they feel the situation is. CEA's can be very unstable at times.

    Kim

    Thank you
    Thank you all for posting, I really appreciate your experiences and kind words. It does make me feel a little better. I will let you know what my Onc. has to say about my CEA's. Maybe he will ask me to take them again or scan. Not looking forward to yet another scan before the holiday's but got to do what I got to do! Love you all, Patti
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Praying
    Hi, Patti.

    I'm sorry you got news that put such a damper on the day. I do hope your oncologist will give you many reasons to feel hopeful tomorrow. I'll be praying for you.

    *hugs*
    Gail
  • sfmarie
    sfmarie Member Posts: 602
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    Patti
    I think that is the scan is showing shrinkage, that is more reliable than CEA levels. I know how disheartening having levels go up, but don't listen to that too much, as it is only one measure.
    I am praying for you, it sounds as if the chemo is working. My sister was dx in 03/09 and her levels have gone up and down, but like you the scans are showing shrinkage. Her story is quite similar to yours.
    Happy Thanksgiving. God bless, Marie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Hi Patti,
    I am sorry to hear

    Hi Patti,

    I am sorry to hear you are upset about your CEA results. When I have asked my oncologist about my CEA results, she has said they are not always good indicators & she doesn't tell me what my numbers are ( I am guessing they don't make any sense in my case). In any case, I think the scans are more definitive & it sounds like your scan results are good; I would concentrate on that & that's what you can focus on when you talk to family.
  • ittapp
    ittapp Member Posts: 383 Member
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    AnneCan said:

    Hi Patti,
    I am sorry to hear

    Hi Patti,

    I am sorry to hear you are upset about your CEA results. When I have asked my oncologist about my CEA results, she has said they are not always good indicators & she doesn't tell me what my numbers are ( I am guessing they don't make any sense in my case). In any case, I think the scans are more definitive & it sounds like your scan results are good; I would concentrate on that & that's what you can focus on when you talk to family.

    I feel so blessed to have
    I feel so blessed to have you all to talk to and to let it all out! It means the world to me. Thank you all, Patti
  • velo8162
    velo8162 Member Posts: 15
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    ittapp said:

    I feel so blessed to have
    I feel so blessed to have you all to talk to and to let it all out! It means the world to me. Thank you all, Patti

    Hi Patti
    Don't put too much in the CEA. I was fixated by it and mine would rise during chemo at times and freak me out. My Onc at MD Anderson does not put much into the CEA numbers, he says the scans are a much better indicator as to treatment, and sounds like your are headed in the right direction.

    John
  • eric38
    eric38 Member Posts: 583
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    velo8162 said:

    Hi Patti
    Don't put too much in the CEA. I was fixated by it and mine would rise during chemo at times and freak me out. My Onc at MD Anderson does not put much into the CEA numbers, he says the scans are a much better indicator as to treatment, and sounds like your are headed in the right direction.

    John

    Cea levels rise and fall
    My cea level started at 333. At last count it was half of that but still in triple digits. Even at that level my doctor said that does not represent a high cancer burden. A lot of people don`t take stock in cea levels. As Craig said they can rise from cancer cells dying off so it may be a good thing. I would worry alot more about a negative scan than cea levels. The cea levels can pick up more things than just cancer. Inflammation can also cause your cea to elevate. A cea of 22 is not that high in the scheme of things and a small rise like that can be any thing. It may actually be a positive thing. I have met people who had ceas in the thousands. Considering your circumstance it`s only normal to be alarmed but it probably means nothing.

    Eric
  • ittapp
    ittapp Member Posts: 383 Member
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    eric38 said:

    Cea levels rise and fall
    My cea level started at 333. At last count it was half of that but still in triple digits. Even at that level my doctor said that does not represent a high cancer burden. A lot of people don`t take stock in cea levels. As Craig said they can rise from cancer cells dying off so it may be a good thing. I would worry alot more about a negative scan than cea levels. The cea levels can pick up more things than just cancer. Inflammation can also cause your cea to elevate. A cea of 22 is not that high in the scheme of things and a small rise like that can be any thing. It may actually be a positive thing. I have met people who had ceas in the thousands. Considering your circumstance it`s only normal to be alarmed but it probably means nothing.

    Eric

    Thank you Eric, I feel so
    Thank you Eric, I feel so much better reading the posts from all of you, I follow your progress closely and pray for you everynight. You are one of the most positive people along with so many others. I am learning from all of you. I guess the hardest thing is that friends and family love us but don't really understand what we are going through. I do think my husband understands though, he is with me in this every step of the way. My sweetie is at every chemo treatment, Dr. appt. and my ups and downs. He takes my pump off and I know how hard this is for him emotionally. He is my ROCK!! So,it is good to give him a break some time and have other people to talk to. It is so comforting to have all of you on this board I thank the Lord everynight for such wonderful people.
  • eric38
    eric38 Member Posts: 583
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    ittapp said:

    Thank you Eric, I feel so
    Thank you Eric, I feel so much better reading the posts from all of you, I follow your progress closely and pray for you everynight. You are one of the most positive people along with so many others. I am learning from all of you. I guess the hardest thing is that friends and family love us but don't really understand what we are going through. I do think my husband understands though, he is with me in this every step of the way. My sweetie is at every chemo treatment, Dr. appt. and my ups and downs. He takes my pump off and I know how hard this is for him emotionally. He is my ROCK!! So,it is good to give him a break some time and have other people to talk to. It is so comforting to have all of you on this board I thank the Lord everynight for such wonderful people.

    The Great Hubby
    Your husband sounds like a great guy and very empathetic but noone can really know unless they are going through it or have been through it. That being said it is very hard to watch someone you love go through something like this. I`ve said before if someone in my family had to go through it I`m glad it was me. I am strong and can handle the fight but it would break my heart to see anyone in my immediate family go through this. The positive side is that it makes good moments that much sweeter. I appreciate life so much more and I would rather have a short quality life than a long boring, depressing, or lonely one. Appreciate every moment and hope for the best but prepare for whatever comes.

    Eric
  • polarprincess
    polarprincess Member Posts: 202 Member
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    eric38 said:

    The Great Hubby
    Your husband sounds like a great guy and very empathetic but noone can really know unless they are going through it or have been through it. That being said it is very hard to watch someone you love go through something like this. I`ve said before if someone in my family had to go through it I`m glad it was me. I am strong and can handle the fight but it would break my heart to see anyone in my immediate family go through this. The positive side is that it makes good moments that much sweeter. I appreciate life so much more and I would rather have a short quality life than a long boring, depressing, or lonely one. Appreciate every moment and hope for the best but prepare for whatever comes.

    Eric

    hi
    well hopefully this will help you feel better. I am sending you a link to a discussion on another forum about a new reagent being used in cea tests that is resulting in significantly higher cea numbers so possibly that is the reason for yours being elevated.
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=10614
  • Holdtight
    Holdtight Member Posts: 151
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    KathiM said:

    CEA can do strange things....
    Can rise for other reasons. I would try to stay calm, and see what your doctor says. I found it was sort of like when I was working at losing weight...if I weighed myself too often, I would get depressed because of the fluxuations....

    For me, CEA was NOT a good marker...as was the breast cancer marker, as well...

    I am sending BIG hugs....

    Hugs, Kathi

    HI1 Craig!
    I have a blood test taken before each Chemo treatment - which are two weeks apart would your opinion be that this is a clearer way of reading the actual true results. Thanks. Sorry everybody I'm very knew at this board and I have a hard time learning how to write on here. But thank you so much for all of your great support. I love and pray for you all. Happy Holidays. Hugs.