CEA going up after starting chemo

CherylHutch
CherylHutch Member Posts: 1,375
Hey gang,

I've been doing some searching around, but I have to admit, I have Chemo brain this week, so my focusing powers aren't the best. But I could have sworn I read somewhere, either here on the boards or while googling somewhere that when you start a new chemo (or just start chemo that you've been on before but have had a break)... if your CEA goes UP then this is not necessarily something to be too concerned about. There are a lot of things that can trigger a rise in CEA and, as we all know, CEA is not always a good indicator in everyone.

I happen to be very sensitive to my CEA, so it has always been an excellent indicator for me. When it slowly started rising (1.2 - 2.0 - 2.4 - 3.5 up to 9.0) we knew something was up. Sure enough, the small nodules in my lungs had started to grow. Went on the Xeloda and after a couple of rounds, the CEA went back down and in those first 3 months, the nodules shrunk by 33%. Then we had to cut the dose down, and the CEA started going up again, and the nodules started growing.

I then had a 6 week break from chemo to get it all out of my system before we started the Irinotecan (4 weeks ago). At the beginning of the Irinotecan the CEA was at 9.0. I had that horrific first treatment where I figured it had made me so sick, imagine what it was doing to the nodules? I then got my CEA results this week (really, after only one Iri treatment) and my cea is at 25!!! YIKES! Almost gave me a heart attack.

My oncologist is in China for 2 weeks (yes, on a work-related research trip) but she emailed me to say that although she knows I'll be disappointed with that reading, not to be discouraged. It will take a couple of treatments and readings for us to figure if the Iri is doing it's job.

So my question for the masses is. Am I losing it or did I really read somehwere on these board or in someone's google research that one of the potential causes of rising CEA while on chemo is that it can indicate that there are dying cancer cells. When cancer cells are killed by chemo (or whichever way we find to kill them, but usually by powerful chemo), the dead cells release the CEA protein... hence in a sensitive reading, the CEA goes UP, not down. It will settle down of course, once the cells have finished releasing the protein.

Am I making this up, or has someone else heard/read this as well?

Cheryl

Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Cheryl
    I was told that the killing/dying of the cancer cells causes them to release additional CEA and that is what accounts for a rise in some when they start a treatment.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Lori-S said:

    Cheryl
    I was told that the killing/dying of the cancer cells causes them to release additional CEA and that is what accounts for a rise in some when they start a treatment.

    Thank you, Lori!!
    That gives me a little bit of relief... just knowing how nasty that first round was. Maybe it actually is doing more good, but the way it's showing me through me for a bit :)

    I'm glad you have heard that and I read it somewhere... keeping fingers crossed :)

    Cheryl
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Tha'ts the Rumor:)
    That's the way I've always heard it, Cheryl.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    I've heard that too
    Hi Cheryl,

    Sorry you're having to worry about the CEA rising again. Yes, I've been told and heard from a few different sources that CEA can rise initially- that while cancer cells start dying off, they release CEA into the bloodstream & that can show a temporary elevation in the CEA reading. That has never actually happened with me, but I know that it does with some. I will hope for the best that that is what is happening with you.
    Also remember that one chemo treatment with the irinotecan really isn't enough to tell anything yet, so I'd definitely give it another treatment or two and then give the CEA another check then.
    I know how hard it is to not worry about these things- I'm always watching and worrying over my CEA, but you just have to let it go for awhile and wait until after another couple of treatments.

    Hang in there-
    Lisa :)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    lisa42 said:

    I've heard that too
    Hi Cheryl,

    Sorry you're having to worry about the CEA rising again. Yes, I've been told and heard from a few different sources that CEA can rise initially- that while cancer cells start dying off, they release CEA into the bloodstream & that can show a temporary elevation in the CEA reading. That has never actually happened with me, but I know that it does with some. I will hope for the best that that is what is happening with you.
    Also remember that one chemo treatment with the irinotecan really isn't enough to tell anything yet, so I'd definitely give it another treatment or two and then give the CEA another check then.
    I know how hard it is to not worry about these things- I'm always watching and worrying over my CEA, but you just have to let it go for awhile and wait until after another couple of treatments.

    Hang in there-
    Lisa :)

    Cheryl my Onc never order a CEA until at least two rounds of
    Chemo, he say that is the way to don't depress their patient, normally you need more rounds to start to see proper results!.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    lisa42 said:

    I've heard that too
    Hi Cheryl,

    Sorry you're having to worry about the CEA rising again. Yes, I've been told and heard from a few different sources that CEA can rise initially- that while cancer cells start dying off, they release CEA into the bloodstream & that can show a temporary elevation in the CEA reading. That has never actually happened with me, but I know that it does with some. I will hope for the best that that is what is happening with you.
    Also remember that one chemo treatment with the irinotecan really isn't enough to tell anything yet, so I'd definitely give it another treatment or two and then give the CEA another check then.
    I know how hard it is to not worry about these things- I'm always watching and worrying over my CEA, but you just have to let it go for awhile and wait until after another couple of treatments.

    Hang in there-
    Lisa :)

    Good to hear others have heard the same thing :)
    Thanks, Lisa... and definitely good advice. Same advice I'd give everyone else... but you know how it is, when something takes you by surprise ;)

    Since I have a couple of things on the go... the lung nodules, the kidney lesion (that has nothing to do with the colon mets), and then the various chemos that I've been on recently.... I wasn't expecting the CEA to jump up like that. Just took me by surprise even though it might not mean anything, or it might actually be a good thing, we just don't know yet.

    Pepe... yep... it's true... once doesn't want to overdue tests. One should only actually get them done when there's a need for them. So although this is my first regime with the Irinotecan (and the CEA reading was only after the first session), it is not the only chemo I was on. I was also on the Xeloda which was doing so well the first three months, then stopped working when we reduced that dose. There were two indications that it had stopped working... CT scan showed the lung nodules were growing again and the CEA indicated a trend upwards. Hence... the switch in chemos... and we are continuing the CEA testings to monitor the trend... is it going to continue going upwards or will the new chemo start bringing it down. It's an ongoing thing with me.... but whatever is showing right now on the tests is really just setting a foundation for the start of this treatment.

    Still... it is reassuring that the sudden jump could just be adjusting to the new chemo and/or actual dead cells giving off the extra CEA into the blood stream. I would be surprised that there was much action after only one treatment... on the other hand, when the Xeloda shrunk the nodules by 33% in the first three months, these results surprised the heck out of my medical team. They expected "good results" to be that the first three months the nodules stopped growing and became stable... but to then shrink that quickly.... well, it just goes to show you never know what's going to take and what isn't.... and right now, it's too early for me to know if the Iri is going to be my chemo of choice :)

    Thanks all!

    Cheryl