going up again

lisa42
lisa42 Member Posts: 3,625 Member
edited March 2014 in Colorectal Cancer #1
I had chemo yesterday (day changed from Thursdays to Tuesdays). All went pretty well & I just feel a bit nauseated this morning, but not too bad. I'll be off doing errands in another hour or so. Anyhow, in spite of the fact that all went well and easily during chemo, I was dismayed to find out my CEA rate went waaayyy up over the 2 week chemo break I had.
1st week of a break was due to having a bad cold/cough with tonsillities and being on antibiotics (fortunately the z-pack antibiotics knocked out the infection part pretty quickly). The second week off chemo was because my onc decided to have me wait until the day after seeing Dr. Lenz (a week ago Monday)- the idea was if I qualified for a clinical trial under Lenz, that I'd then be halfway through the required time for clinical trials of having no chemo for 4 weeks prior to starting a trial. As you know, I didn't and won't be starting any trials after all, so I went in for week 1 chemo session of a 3 week cycle (chemo 2 weeks in a row & 1 week off)the day after I saw Dr. Lenz.
Along with my regular bloodwork they drew before chemo last Tuesday, they also drew a new CEA, as they do before I start each new cycle. Right before starting the prior cycle 5 weeks earlier, my CEA was at 74. This was actually down a smidge from the time before of being at 81. Well the two weeks off chemo really did me in- it was up from 74 to 192- more than doubled in just that short time. I had truly expected it to go up, but not quite that much- I thought maybe up to 100 at the most. This is the highest my CEA has ever been since it's been watched in the past 2-1/2 yrs (my first onc never checked it, so I don't know what it was when I was first diagnosed). It was when I had my liver surgery in 5/08 that the hospital checked it & I've been watching it from that point on.
I guess on the plus side, having it go up so much while off the gemzar/xeloda/avastin tells me that that treatment IS doing something! Scary that I can't even take a week or two off, though. I guess I'll keep on plugging on for now.
Now... my colorectal surgeon wants me to have a transanal excision in January to remove the recurrent rectal nodule (just 1/2 cm at this point). My thoughts are now I wonder if that is part of the main cause of my CEA rising and I should get it out right away, OR since my CEA is up, maybe I should postpone it a while so that I can keep on the Avastin until it drops some. In order to prepare for surgery, I have to be off of Avastin 6 wks prior and 6 wks after surgery. It's apparently okay for me to keep on the Gemzar and Xeloda. It's just the Avastin that interferes with healing and can cause bleeding issues from surgery. I guess it's something to talk about with the onc this week.

Take care everyone-
Lisa
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Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Lisa
    I am really sorry to hear your CEA has gone up. I hope the chemo will bring it down. Figuring out when to do the excision is complicated! I am in awe of you doing so much - running errands so soon after chemo!
  • Crow71
    Crow71 Member Posts: 679 Member
    Hey Lisa - This news about
    Hey Lisa - This news about your CEA is disappointing/confusing. CEA is such a weird thing. I wonder how meaningful a rise is in your case. I think you are right to wonder if the new nodule is responsible. It seams like that thing needs to come out at some point. Why wait?
    Hope you can get a good plan in place soon.
    Take Care,
    Roger
  • KathiM
    KathiM Member Posts: 8,028 Member
    I'm wrapping my arms around you, dearheart.....
    Warm and strong....can you feel them?

    Hugs, Kathi
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Crow71 said:

    Hey Lisa - This news about
    Hey Lisa - This news about your CEA is disappointing/confusing. CEA is such a weird thing. I wonder how meaningful a rise is in your case. I think you are right to wonder if the new nodule is responsible. It seams like that thing needs to come out at some point. Why wait?
    Hope you can get a good plan in place soon.
    Take Care,
    Roger

    Roger,
    "Why wait" is a good question- I have one nodule in the rectum, but numerous in the lungs and 4 in the liver- so perhaps waiting on the excision and pounding the lung and liver tumors with a complete chemo+Avastin a few more cycles would be the way to go, as I'm now thinking. Yes, the rectal node does need to come out, but I don't want it to come out at the expense of all the others being given more opportunity to grow while being off the Avastin. CEA has always been quite indicative for me- every time it's gone up, that has always shown up in tumor growth or increase in PET uptake. Every time it's gone down, my scan has shown shrinkage and/or reduction in uptake. So, I'm taking the big rise pretty seriously. Not that I want to freak out over it, but I know what it means.
    Hope I get a good plan in place soon too- I will. :)
  • lisa42
    lisa42 Member Posts: 3,625 Member
    KathiM said:

    I'm wrapping my arms around you, dearheart.....
    Warm and strong....can you feel them?

    Hugs, Kathi

    Yes!
    Thanks, Kathi!
  • tina dasilva
    tina dasilva Member Posts: 641
    sorry
    @ lots of hugs Tina
  • grammadebbie
    grammadebbie Member Posts: 464
    Dear Friend,
    I am sorry that

    Dear Friend,

    I am sorry that your CEA levels have risen. You are an amazing lady and such an inspiration to all. I will be praying for you.

    Big Hugs and Prayers,
    Debbie
  • Crow71
    Crow71 Member Posts: 679 Member
    lisa42 said:

    Roger,
    "Why wait" is a good question- I have one nodule in the rectum, but numerous in the lungs and 4 in the liver- so perhaps waiting on the excision and pounding the lung and liver tumors with a complete chemo+Avastin a few more cycles would be the way to go, as I'm now thinking. Yes, the rectal node does need to come out, but I don't want it to come out at the expense of all the others being given more opportunity to grow while being off the Avastin. CEA has always been quite indicative for me- every time it's gone up, that has always shown up in tumor growth or increase in PET uptake. Every time it's gone down, my scan has shown shrinkage and/or reduction in uptake. So, I'm taking the big rise pretty seriously. Not that I want to freak out over it, but I know what it means.
    Hope I get a good plan in place soon too- I will. :)

    My CEA had always been a
    My CEA had always been a good marker for me until last July when my scans showed new spots in my liver and lungs despite a drop in CEA. I'm glad that you are not freaking out, but it is good to know that your CEA provides a good idea of what is going on.

    I think your idea to go after the lung and liver mets is spot on. You may already have your plan in place. You really have a good perspective and an ability to think logically about your disease. I admire that.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Lisa, I've always been
    Lisa, I've always been concerned, since you never ever had rectal surgery, that there was some cancer there spreading little cells to other areas. Gut feeling has always been to encourage you to have surgery as soon as possible.

    I'll be praying and know you'll give this to the Lord. Let Him guide your decision.

    Big hugs to you,
    Diane
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    Thats not real good news about your CEA and so sorry to hear that. Hopefully once you get this taken out, your levels will go back to normal. Glad your chemo went well yesterday and you aren't feeling too bad. Hope you get some answers from your oncologist this week.

    Kim
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    :-(
    Awwwww Lisa,

    I don't understand it, why your cea has gone up so much. I hope it's just because of the tumour in your rectum. :-( Ok enough sad faces from me!! I will pray for you my sister (in christ), as soon as I get off. And I hope we can arrange to talk on the phone soon.

    Hugs my sweet friend
    Sonia
  • JoyceSteele
    JoyceSteele Member Posts: 145
    Thinking of you
    Lisa, just a note with an enclosed hug and I will also say prayers for you. You are an amazingly courageous lady. I admire you immensely. Keep us posted. Hugs, Joyce
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Thinking of you
    Lisa, just a note with an enclosed hug and I will also say prayers for you. You are an amazingly courageous lady. I admire you immensely. Keep us posted. Hugs, Joyce

    Lisa!
    Just get this surgery and beat the beast! CEA will drop you will see!
    Hugs, vibes, and prayers!
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    pepebcn said:

    Lisa!
    Just get this surgery and beat the beast! CEA will drop you will see!
    Hugs, vibes, and prayers!

    Hey Girl....
    I am with you on staying with more chemo. CEA didn't rise till you were off chemo...which means it WAS keeping everything down...even the butt bump. I would want to get counts back down before surgery because you know counts are going to go up when you have to get off the juice FOR surgery. Just my opinion... Your CEA has always been a very good indicator for you. Go with your gut. Call me if ya wanna talk. Take care.

    Jennie
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Lisa
    Dang that CEA! I know how you are feeling about having it rise. My CEA is at the highest it's ever been too. Maybe having the rectal nodule out will help with the number. I know you will talk to your onc about all of the possibilities and pick the best solution. I am praying for you. HUGS to you.
  • sasjourney
    sasjourney Member Posts: 395 Member
    Thinking about you
    Lisa,

    Sorry to hear about your CEA, but I know you will get it back down. I am praying for you and sending you bigs hugs. Hope we can talk soon.

    Hugs,
    Sara
  • bruins1971
    bruins1971 Member Posts: 227
    sorry to hear about the cea
    Can anyone tell me how important the CEA number actually is. My onc says its helpful but not to read to much into that number. At my highest in the beginning right when I started chemo after the colon surgery it was only 26 and that was when I still have two tumors in my liver. Now after all this chemo and two surgeries my CEA is down to 1.8

    Bobby
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Lisa:)
    I agree with the group, Lisa...

    I'll be anxiously watching this chess match and waiting on your next move with great anticipation:)

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

    sorry to hear about the cea
    Can anyone tell me how important the CEA number actually is. My onc says its helpful but not to read to much into that number. At my highest in the beginning right when I started chemo after the colon surgery it was only 26 and that was when I still have two tumors in my liver. Now after all this chemo and two surgeries my CEA is down to 1.8

    Bobby

    Bobby
    Dang double post
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Lori-S said:

    Bobby
    Dang double post

    Thanks
    Great CEA explanation Lori!
    Thanks to everyone who replied- hugs to you all!!
    I was in the oncology office this afternoon for a neulasta shot & had hoped to flag down my oncologist- no luck. I guess I'll email him- I think I'll get a faster response that way. I also emailed my colorectal surgeon today, but no answer yet.