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a little worried

lisa42
lisa42 Member Posts: 3,625
edited March 2014 in Colorectal Cancer #1
I went for my 3rd time of getting infusion of Avastin today, which is part of my "maintenance" program, along with taking Xeloda 2 wks on, 2 wks off at 1,000 mg. a day. I'm not new to Avastin- I took it w/ Folfox a while back and had most recently taken it with Camptosar and Xeloda, then switched to just the Avastin and Xeloda as maintenance following a good PET scan. This good PET scan was taken on April 2nd- tomorrow will mark 6 weeks since having it done.
Anyway, they handed me a copy of my labwork today. I had my CEA level last tested 4 weeks ago & it was 1.2, which I know is quite good. Well, today it was 3.7 Not terribly high, but it's now considered "high" according to the lab's parameters & CEA has always been a good marker for me. It's never gone up before without the cancer activity level in my body going up. I'm just wondering how my cancerous activity level could have gone up in just 4 weeks while I've still been on Avastin and Xeloda (albeit a low dose of Xeloda at 1,000 mg a day).
The nurse said the oncologist wants to meet with me to discuss it, especially since the CEA in me has always been such an accurate predicter of activity. I'm wondering if he'll want to put me back on the Camptosar again, bump the Xeloda dose up, or just wait a couple of weeks until my next Avastin infusion and check the CEA again then. Or maybe he'll want to do another PET scan, even though it's just been six weeks. I guess I have to wait until Friday to discuss it w/ him.
Any thoughts anyone?

I know it's possible for tumors to grow and/or become active again while on treatment (my tumors are in my lungs at this point- all were subcentimeter and inactive at my last scan). I've just never had anything grow or go from inactive to active while on something & I'm getting scared that this is what has happened.

Lisa

Comments

  • PhillieG
    PhillieG Member Posts: 4,866
    You answered it best
    Lisa, I think you asked yourself all of the right questions. The best I could offer is to write all your questions down so you will be prepared when you see him. I have a feeling you already do that. The rise in your CEA could mean nothing or it could be an indicator that somethings up or it could just be an anomaly. I have had things grow while on Irinotecan and Erbitux, not grow much but a little just the same. I've also had them shrink again while on the same drugs. I know I didn't offer any ah-ha moments there. I'll be thinking of you Friday.
    Be well,
    -phil
  • Julie 44
    Julie 44 Member Posts: 476
    PhillieG said:

    You answered it best
    Lisa, I think you asked yourself all of the right questions. The best I could offer is to write all your questions down so you will be prepared when you see him. I have a feeling you already do that. The rise in your CEA could mean nothing or it could be an indicator that somethings up or it could just be an anomaly. I have had things grow while on Irinotecan and Erbitux, not grow much but a little just the same. I've also had them shrink again while on the same drugs. I know I didn't offer any ah-ha moments there. I'll be thinking of you Friday.
    Be well,
    -phil

    Stay calm
    Lisa,
    First of all stay calm and take a deep breath..Don't get ahead of youself....Like Phil said make a list of everything you can think of no question is silly...I know it is hard to keep your head straight but you can do it otherwise you can make yourself sick which wouldn't help you at all...Let us know how you make out.Good luck we are all with you..Julie
  • dmdwins
    dmdwins Member Posts: 450
    Julie 44 said:

    Stay calm
    Lisa,
    First of all stay calm and take a deep breath..Don't get ahead of youself....Like Phil said make a list of everything you can think of no question is silly...I know it is hard to keep your head straight but you can do it otherwise you can make yourself sick which wouldn't help you at all...Let us know how you make out.Good luck we are all with you..Julie

    Just know
    I don't think I could say anthing any better than Phil or Julie said. But please know that I will be thinking and praying that you get news you want to hear on Friday.

    Take Care,
    Dawn
  • fmsamos
    fmsamos Member Posts: 34
    Your procedure.
    Hi Lisa, Hoping you are ok- you know your body & medical as good as alot of us here who stay on top of our conditions. I have to go in monday since they saw something on my CT scan- I am worried alittle because it has Almost been 5 yrs, yeah here we go again,,, naw I am cool. My thoughts to you stay strong... Hugs Amos
  • rrob
    rrob Member Posts: 158
    CEA Fluctuation
    Lisa,

    I know you can't help but worry, because we've all been there. When I was doing my chemo last year (FOLFOX w/Avastin), there were a couple of months when my CEA level would bump up and down. I would always worry that the chemo was not effective or my cancer was on the move. However, that never turned out to the be the case. I know that CEA is a very good indicator for you, but keep in mind that other things can cause your CEA to react. CEA reacts to infections, too, so hopefully it's something as minor as that causing a glitch. Something else I thought was kind of interesting was that CEA levels can rise during chemo as tumor cells die, so maybe this maintenance chemo is killing off any microscopic cells that might have been left behind. I'm thinking you might be able to do some really cool visualization with your Zeloda and Avastin in warrior mode, yelling "Die, suckers, die!" Warped, I know, but hey, it makes me smile to think of our bodies winning this war!

    You've been such a positive person when I've been worried and needed a "virtual" shoulder to lean on. I'll be thinking of you and saying lots of prayers for you.

    Rebecca
  • lisa42
    lisa42 Member Posts: 3,625
    thanks
    Thanks Everyone- I appreciate your comments and encouraging words. Rebecca, I especially like your comments :) I never heard about CEA temporarily rising as tumors are dying. Interesting... is that actually true? I will visualize that to be the case!
    Since I first posted, my nurse practitioner called back and said that he talked to the Dr. and even though I have an appt on Friday with him, he wanted me to know that we can discuss it, but doesn't want to make any changes in my treatment based on just one CEA test- he wants to wait and do more. We'll see what he says on Friday. I'll try not to worry- I'll visualize the cancer cells withering and dying in the meantime!

    Blessings,
    Lisa
  • msccolon
    msccolon Member Posts: 1,917
    lisa42 said:

    thanks
    Thanks Everyone- I appreciate your comments and encouraging words. Rebecca, I especially like your comments :) I never heard about CEA temporarily rising as tumors are dying. Interesting... is that actually true? I will visualize that to be the case!
    Since I first posted, my nurse practitioner called back and said that he talked to the Dr. and even though I have an appt on Friday with him, he wanted me to know that we can discuss it, but doesn't want to make any changes in my treatment based on just one CEA test- he wants to wait and do more. We'll see what he says on Friday. I'll try not to worry- I'll visualize the cancer cells withering and dying in the meantime!

    Blessings,
    Lisa

    visualization
    When I'm on chemo, I visualize grey sharks swimming through my body consuming the cancer, which I visualize as black dots, which i insist they HAVE to show themselves to the sharks to be eaten. The sharks take them out of my body through elimination. When I was having problems with my white cells being low I visualized white coming up from my marrow and surging through my veins, enveloping and consuming any cancer cells they came upon as well!
    mary
  • rrob
    rrob Member Posts: 158
    lisa42 said:

    thanks
    Thanks Everyone- I appreciate your comments and encouraging words. Rebecca, I especially like your comments :) I never heard about CEA temporarily rising as tumors are dying. Interesting... is that actually true? I will visualize that to be the case!
    Since I first posted, my nurse practitioner called back and said that he talked to the Dr. and even though I have an appt on Friday with him, he wanted me to know that we can discuss it, but doesn't want to make any changes in my treatment based on just one CEA test- he wants to wait and do more. We'll see what he says on Friday. I'll try not to worry- I'll visualize the cancer cells withering and dying in the meantime!

    Blessings,
    Lisa

    CEA information
    Lisa,

    Here's the link to the information I was talking about.
    http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

    I had to research this for my ex-husband, who does not have cancer, but who had a CEA level of 3.1 after a routine exam which happened to do a CEA check. It turned out to be a glitch, because when it was retested a couple of months later, it was within normal ranges. I have also read as much as possible for myself because my CEA is always an indicator of how I am doing in the fight. I hope this helps. Keep on visualizing!

    Rebecca
  • wanxia58
    wanxia58 Member Posts: 8
    my CEA
    This might make you feel better, Lisa. My CEA, when chemo started, was 74. It went down to 32, 28, 12, then hiked back up to 25. When chemo ended, it was 23. Two month later, i.e. now, it's 40. I'm panicking and my doc will do a scan next Monday.

    I'd love to have your CEA, even the one that makes a little worried. :)