CEA climbing

Lori-S
Lori-S Member Posts: 1,277 Member
edited March 2014 in Colorectal Cancer #1
So, I only get CT scans without contrast because I am deathly allergic to the IV contrast. Today my scans came back with no notable areas. My onc said that with my scans a tumor would have to be the size of his thumb nail before it would show on the scan so no notable tumors is a good thing. But, my CEA has been climbing since my surgery in May. I had a T4b with the tumor through the colon, adhering to the abdominal wall in 3 places, into the small bowel with total obstruction in the colon and nearly total obstruction in the small bowel requiring a resection of both the colon and small bowel. I was surprised with the size, fast growth (onc says fast growth shown by the fact that it had out grown it's blood supply and becoming necrotic)and aggressiveness yet my CEA was only 9.7. I was assured by my onc that not everyone has high numbers.

So my numbers: May 14: 9.7 (pre-op) -- May 22: 2.3 (post-op) -- August 14: 4.6 -- Sept 10: 5.6 -- Oct 14: 6.8

In light of these numbers and on the advice of my onc I've decided to join the FOLFOX club even though my scans don't show anything yet. He said that without contrast it's difficult to really see the liver and lungs the way they should be seen and that the continuing increase in my CEA is concerning. I was hoping to forego chemo as I am officially only a stage IIc

Yes they've added a c group to the stage IIs just for people like me! ☺

But, just to make things interesting I had to go and get a sinus infection from my allergies and showed up today with a 101.8 fever (my thermometer at home keeps saying 97.7 - had to get a new one today) so, I don't start chemo until the 25th to give the antibiotics time to take care of the infection.

Wish me luck that the chemo helps those numbers drop!

Comments

  • Joy1216
    Joy1216 Member Posts: 290 Member
    #2
    Praying that your numbers drop
    I'll be praying that your CEA drops. I am also severely allergic to the IV contrast dye. They gave me prednisone the night before and the morning of each scan ( I've only had two) to suppress my immune system and thus no reaction to the IV contrast. Have you tried prednisone or other steroids?
    Joy
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #3
    Joy1216 said:

    Praying that your numbers drop
    I'll be praying that your CEA drops. I am also severely allergic to the IV contrast dye. They gave me prednisone the night before and the morning of each scan ( I've only had two) to suppress my immune system and thus no reaction to the IV contrast. Have you tried prednisone or other steroids?
    Joy

    Joy
    Yes, I do fine with premeds (benedryl and prednisone) but, it seems none of the facilities want to let me do it myself. They insist that I be hospitalized for premeds and after to be watched. They say they don't want the liability. Sounds silly to me.
    Thank you for the prayers!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
    Lori
    I am sorry to hear your CEA is rising. It sounds like you have a proactive onc! I am also allergic to the CT IV contrast (my only known allergy!). I was able to have the premeds a couple of times successfully, but then I got a couple of hives after one + that was it - no more IV contrast. My onc said they are still able to read the scans, but the radiologist has to "play" with it similarly to how film developers work with the film to get the results they want. Good luck with this.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #5
    AnneCan said:

    Lori
    I am sorry to hear your CEA is rising. It sounds like you have a proactive onc! I am also allergic to the CT IV contrast (my only known allergy!). I was able to have the premeds a couple of times successfully, but then I got a couple of hives after one + that was it - no more IV contrast. My onc said they are still able to read the scans, but the radiologist has to "play" with it similarly to how film developers work with the film to get the results they want. Good luck with this.

    Anne
    Yes, I wouldn't think they'd want to give it to you if you got hives with premeds. You might have a more serious reaction next time.

    I don't know what this radiology group does about the scans without contrast. The cancer center is new (just 3 weeks opened) and attached to an already operating hospital so they are still working out the kinks between the 2 entities. The radiology is part of the hospital. It makes things kind of interesting going back and forth between the 2 with different protocol. For instance the onc nurses aren't allowed to draw blood as it intefers with the contract they have in place with the hospital. Who knows maybe by next scan time the hospital and the clinic may have worked something out where they would accept me premedicating myself. I was thinking that if they insist on me being inpatient to have scans with contrast that would garner them some hospital fees.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #6
    Lori-S said:

    Anne
    Yes, I wouldn't think they'd want to give it to you if you got hives with premeds. You might have a more serious reaction next time.

    I don't know what this radiology group does about the scans without contrast. The cancer center is new (just 3 weeks opened) and attached to an already operating hospital so they are still working out the kinks between the 2 entities. The radiology is part of the hospital. It makes things kind of interesting going back and forth between the 2 with different protocol. For instance the onc nurses aren't allowed to draw blood as it intefers with the contract they have in place with the hospital. Who knows maybe by next scan time the hospital and the clinic may have worked something out where they would accept me premedicating myself. I was thinking that if they insist on me being inpatient to have scans with contrast that would garner them some hospital fees.

    Sorry for your Cea growing!
    but hope Is nothing, how many rounds of folfox are you Going to have?
    Cheers,!
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #7
    Pet scan??
    Lori, would you be able to have a Pet Scan so you'd know where the growth is?

    Gosh I'm sorry to hear your news.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #8
    pepebcn said:

    Sorry for your Cea growing!
    but hope Is nothing, how many rounds of folfox are you Going to have?
    Cheers,!

    Pepe
    Looks like I'm doing the 12 rounds that I chose not to do after surgery. I was given the option of "clean up" chemo and decided that if it wasn't absolutely necessary I didn't want to do it since I was a stage II.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #9
    dianetavegia said:

    Pet scan??
    Lori, would you be able to have a Pet Scan so you'd know where the growth is?

    Gosh I'm sorry to hear your news.

    Diane
    Yes, I can do a PET. There were a couple of lymph nodes that showed on my hospital scan (with contrast while hospitalized) but, they didn't show on this most recent (without contrast) and the onc is thinking they may be the culprit. So, I'm doing the standard 12 rounds to see how it goes.
  • sasjourney
    sasjourney Member Posts: 395 Member
    #10
    Thinking about you
    Lori,

    Hope you are feeling better. I will be praying for you and sending positive thoughts as you begin Folfox. You will do great and it will be done before you know it. Hang in there!

    Hugs,
    Sara
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #11
    CEA
    Lori my CEA went from 1.4 for four years after rectal cancer to 5.6 six months ago and then 14.6 in July. Now post op 2.1. There are a lot of things that can make the CEA go up and down. I did have a CT/Pet scan when my CEA went to 5.6 and they found nothing even with contrast. Sorry you have to join the Folfox club but it's a good idea even for stage 2b and beyond from what I have read. I was a 3b (through the wall and 3 nodes non aggressive) this second time but it was in my asending colon not liver or lungs. My first 2b rectal cancer 4 years ago still did Xeloda. CEA never varied much pre or post op but the rectal tumor lit up very well back then so you never know. Good idea to do the chemo but right now with me on Folfox it's an easy club to join but hard to stay a member. Best of luck Lou
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #12
    scan
    Lori,

    I'm praying that everything is A-okay!

    *hugs*
    Gail
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #13
    tootsie1 said:

    scan
    Lori,

    I'm praying that everything is A-okay!

    *hugs*
    Gail

    Thank you guys
    I really love this group! Everyone is so knowledgable and caring. You can find out just about anything you need here. This has been such a tough year for me. I feel so lucky to have you in my corner.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #14
    LOUSWIFT said:

    CEA
    Lori my CEA went from 1.4 for four years after rectal cancer to 5.6 six months ago and then 14.6 in July. Now post op 2.1. There are a lot of things that can make the CEA go up and down. I did have a CT/Pet scan when my CEA went to 5.6 and they found nothing even with contrast. Sorry you have to join the Folfox club but it's a good idea even for stage 2b and beyond from what I have read. I was a 3b (through the wall and 3 nodes non aggressive) this second time but it was in my asending colon not liver or lungs. My first 2b rectal cancer 4 years ago still did Xeloda. CEA never varied much pre or post op but the rectal tumor lit up very well back then so you never know. Good idea to do the chemo but right now with me on Folfox it's an easy club to join but hard to stay a member. Best of luck Lou

    Lou
    Thanks for being brave enough to go ahead of me on the FOLFOX journey. My first is on the same exact day as your second treatment so you will be exactly 1 treatment ahead of me. We will be the October chemo babies! My birthday is on the 29th so after reading your post I figure I can legitimately just sleep through my birthday and it won't count so I can stay a year younger.
    ☺

    By my path reports I was a stage IIc as there wasn't any cancer in the lymph nodes removed with the surgery but, my onc says because there were suspicious lymph nodes showing in a previous scan that was post surgery (but not taken or disected during the surgery) he would rather treat me as a IIIc. Also, I just found out on Monday that my birth mother died of colon cancer last November (she was only 16 years older than me). So, all that accompanied with the CEA continuing to climb pushed me to agree to the chemo. I was hoping that I could dodge that one but, here I am, follow right behind you. Good luck to you, Lou!
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #15
    Lori
    Lori,
    It sounds like the docs have the right idea of going after anything that may be there. I like the idea of you sleeping through your birthday so it doesn't count. :) You can just push this year under the rug and when it is over have a redo. I'll be thinking of you on the Folfox. Lots of rest when feeling sick and staying active in between helped ****.

    Aloha,
    Kathleen
  • bgob11
    bgob11 Member Posts: 1
    #16
    Kathleen808 said:

    Lori
    Lori,
    It sounds like the docs have the right idea of going after anything that may be there. I like the idea of you sleeping through your birthday so it doesn't count. :) You can just push this year under the rug and when it is over have a redo. I'll be thinking of you on the Folfox. Lots of rest when feeling sick and staying active in between helped ****.

    Aloha,
    Kathleen

    Hi to everyone
    I am new to this website so here is my story, I was diagnosed with colorectal cancer 9/2008. I had radiation and chemo prior to resection and was followed with 24 weeks of 5fu and oxiplatin. In June 2009 i was finished and free of cancer. In june 2010 my cea climbed to 21. I had a colonoscopy, negative, followed by a pet scan which showed something on my right overy. My right overy and fallopian tube was removed this past friday and in 2 weeks i start another 24 weeks of chemo. Needless to say I am very scared.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #17
    bgob11 said:

    Hi to everyone
    I am new to this website so here is my story, I was diagnosed with colorectal cancer 9/2008. I had radiation and chemo prior to resection and was followed with 24 weeks of 5fu and oxiplatin. In June 2009 i was finished and free of cancer. In june 2010 my cea climbed to 21. I had a colonoscopy, negative, followed by a pet scan which showed something on my right overy. My right overy and fallopian tube was removed this past friday and in 2 weeks i start another 24 weeks of chemo. Needless to say I am very scared.

    bgob11
    Welcome, you have definitely come to the right place. I am sorry for your recurrance. There
    are many here who have had recurrances + have dealt successfully with them. I have mets on my liver + possibly my ovary. I am in chemotherapy treatment currently. I understand being scared. We are here to help you, so please post whenever you feel like it.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #18
    bgob11 said:

    Hi to everyone
    I am new to this website so here is my story, I was diagnosed with colorectal cancer 9/2008. I had radiation and chemo prior to resection and was followed with 24 weeks of 5fu and oxiplatin. In June 2009 i was finished and free of cancer. In june 2010 my cea climbed to 21. I had a colonoscopy, negative, followed by a pet scan which showed something on my right overy. My right overy and fallopian tube was removed this past friday and in 2 weeks i start another 24 weeks of chemo. Needless to say I am very scared.

    Hi there bgog11
    I want to welcome you. Please feel free to ask questions and share whatever is going on. I am so sorry that you are going through this again and am so glad that you are recovering from your surgery. I sure know you are scared. I am happy that you found us and will hope for all the best with your upcoming treatments.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #19
    Lori-S said:

    Hi there bgog11
    I want to welcome you. Please feel free to ask questions and share whatever is going on. I am so sorry that you are going through this again and am so glad that you are recovering from your surgery. I sure know you are scared. I am happy that you found us and will hope for all the best with your upcoming treatments.

    Wellcome bgob11 which combo are you having this time?
    cheer up and welcome again!
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #20
    Lori-S said:

    Lou
    Thanks for being brave enough to go ahead of me on the FOLFOX journey. My first is on the same exact day as your second treatment so you will be exactly 1 treatment ahead of me. We will be the October chemo babies! My birthday is on the 29th so after reading your post I figure I can legitimately just sleep through my birthday and it won't count so I can stay a year younger.
    ☺

    By my path reports I was a stage IIc as there wasn't any cancer in the lymph nodes removed with the surgery but, my onc says because there were suspicious lymph nodes showing in a previous scan that was post surgery (but not taken or disected during the surgery) he would rather treat me as a IIIc. Also, I just found out on Monday that my birth mother died of colon cancer last November (she was only 16 years older than me). So, all that accompanied with the CEA continuing to climb pushed me to agree to the chemo. I was hoping that I could dodge that one but, here I am, follow right behind you. Good luck to you, Lou!

    Happy Birthday
    Lori we'll celebrate your birthday 2011 NED and feeling good again. On the Folfox front I felt miserable starting later Wednesday when I was unplugged. Then on Thursday and Friday not good at all just wanted to sleep a lot and didn't eat much. I've lost about nine pounds in ten days. A little diarrhea but not bad still constant feeling of nausea. Friday night didn't sleep much I just couldn't find a comfortable spot. Late Saturday started feeling better and actually ate a little shrimp and rice with some vegs. Still tired but just a little nausea but feels like its getting better. No sensitivity to cold (yet) three fingers have the tingling. I have a blood test on Monday to check the numbers CBC for the next treatment and of course to see if my CEA is still down (2.1). I'll keep in touch Lou

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