A "Wee" Update on Bert

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Unknown
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edited March 2014 in Colorectal Cancer #1
Today Bert went to see his oncologist for the first time since going off chemo on July 8, 2004, and since his last visit on August 5 at which time all scans and test results were in and he was declared NED (HURRAY!!!!!). There isn't much to share because it was just a basic check up but all his blood work results from the August 5 visit were reviewed and everything looks absolutely great, especially his liver test. However, there's always an however with this damn disease isn't there, CEA was back at 9.0, up .5 from previous test of 8.5...so it went from 8.5 on July 8 to 9.0 on August 5. This is absolutely driving me, and I know his oncologist too, crazy. He was at 9.0 in May and then dropped back down to 5.5 in June. He has been this way, up and down, up and down, since January. CT/PET and regular CT have been scheduled for October 21. Onc assures us that these are not out of the norm...he would be due for a CT scan anyway in October but as usual, Dr. Lenz is playing the better safe than sorry card and ordering the CT/PET and CT. I'm anxious again but I will try very, very hard to practice what I preach...just a little, and that is to try not to worry about things that I cannot change or possibly things that there is no reason to worry about (LOL). Sure could use some of your guys support :D and I don't even really know why, except that I need to hear, I guess, words of encouragement.

Hugs,
Monika who was really hoping that CEA from tests on 8/5 would have dropped like they did before.

Comments

  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #2
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    -----up n down, up n down, up n down?????????----
    Struth Monika, why don't you leave the poor guy alone for a bit?
    EEEEERRRRRR-maybe kanga outa get his mind outa tha gutter--lol
    Ok, sweetie--now whats this I read about you worryin? Listen Monika, you keep thinkin that way n kanga's gunna come over n biff ya one!
    POSITIVE, POSITIVE-----I reckon Bert is having a serious reaction to all that worryin--ya gotta chill girl!
    Kanga knows why yu are in worryworld--'tis love sweetie--pure n simple. You n Jen oughta compare notes!
    Be kind to yourself Monika--go give tha big fella a hugg for us--then tell him kanga is gunna come across tha briny if ya don't stop this negative attitude!!!!!
    Yu know yu got our luv n prayers and everyone else here as well,
    kanga n Jen
  • Unknown
    Unknown
    #3
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    kangatoo said:

    -----up n down, up n down, up n down?????????----
    Struth Monika, why don't you leave the poor guy alone for a bit?
    EEEEERRRRRR-maybe kanga outa get his mind outa tha gutter--lol
    Ok, sweetie--now whats this I read about you worryin? Listen Monika, you keep thinkin that way n kanga's gunna come over n biff ya one!
    POSITIVE, POSITIVE-----I reckon Bert is having a serious reaction to all that worryin--ya gotta chill girl!
    Kanga knows why yu are in worryworld--'tis love sweetie--pure n simple. You n Jen oughta compare notes!
    Be kind to yourself Monika--go give tha big fella a hugg for us--then tell him kanga is gunna come across tha briny if ya don't stop this negative attitude!!!!!
    Yu know yu got our luv n prayers and everyone else here as well,
    kanga n Jen

    Ah Kanga, I love you guys a lot. I so wish that we all could have met under different circumstances but am so glad that we met anyway.

    Hugs and lots of love to you and yours.

    Monika :-D
  • Pewter
    Pewter Member Posts: 24
    #4
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    Monika:
    I know all too well the yo-yo CEA, and the anxiety it leads to. My CEA has been doing this for two years, up and down 1.0 to 1.5 points. It gets checked every month, and I get scanned about every 4 months, and nothing has been found. What makes it worse for my anxiety level is the fact that a 0.3 increase was all that was needed to lead to the scan that identified my recurrence 2 years ago.
    I have decided I need to continue to moniter it, in spite of how nuts it makes me, because the CEA was my "saving grace" two years ago. On the other hand, as time goes on, and with each negative scan, I tend to attribute the change to some celestial force or cosmic magnetism.
    I know each of us is a unique case, but maybe Bert and I share those same characteristics. Hang in there.

    Pewter
  • kerry
    kerry Member Posts: 1,313 Member
    #5
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    Monika and Bert,

    I don't even have a baseline CEA. So if mine goes up, I wouldn't know what to think. I have asked my doctor every time what it is and it is usually low (.08 or something like that) but the doc says that is not a reliable indicator of a problem and not to worry about it, since some people have higher CEA's naturally and other's lower. Let's just enjoy the wonderful moments and not spend our time worrying about the unknown and probably wasting our time.

    You are always in my prayers. We seem to be the "old timers" on this site. Keep us posted.

    As always, with lots of love to you,

    Kerry
  • jsabol
    jsabol Member Posts: 1,145 Member
    #6
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    Boy, Monika, what a roller coaster you and Bert are riding. I hope you are feeling calmer about the upcoming tests. Reading Bert's course is truly inspirational...you guys are great fighters. Hope the numbers all get explained away. My first scans are also in October (finished chemo July 9), so I'll be holding my breath a bit, too. Here's hoping we are all breathing easier later this fall. Hang in there, regards to Bert and Mom, Judy
  • allsmiles
    allsmiles Member Posts: 25
    #7
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    Monika,
    As always I wish we could all get off this crazy emotional rollercoaster! Between all the positive thoughts and tremendous prayers I know Bert will be fine. There are such things as "unexplainable jumps" Even though we will be out of pocket for the next two weeks know that I will be thinking of you....one caregiver to another.
  • juliababy
    juliababy Member Posts: 130
    #8
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    Hey Monika,

    I know how worried you are and I just want to let you know you'll be in my prayers. I am sure everything will be fine, Bert sounds like a super trooper and I know he'll beat this thing just like my daddy will. Keep us posted.

    Susana
  • taunya
    taunya Member Posts: 390 Member
    #9
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    Hi Monika,
    I know how hard it is not to worry. Try to keep your serenity and don't forget to breath. It is like this with cancer. Always seems like something and any small thing is so scary. I wish I could give you a giant hug. I will keep you and Bert in my thoughts and prayers. Sending you tons of peace and positive thoughts.
    Love,
    Taunya
  • spongebob
    spongebob Member Posts: 2,565 Member
    #10
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    Monika & "No type" (or maybe I should start calling you "Ned", Bert) -

    AHOY! hey, guys, the answer to your concerns was contained in your own post:

    The doc is running the tests because it's better to be safe than sorry. That should tell you that there is a very low possibility that there is anything wrong. Remember that CEA is a very imprefect test. Remember also the story I related once about the same blood draw, same patient, same day sent out for CEA at two different labs, and how they got a 1.0 difference in the results. It's imperfect. The real indicater is a big jump in CEA level. Be safe, but don't fret being sorry, you guys.

    Best wishes for many more NED years!

    - Sponger
  • andreae
    andreae Member Posts: 236
    #11
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    Hi Monika and Bert,

    I completely understand your anxieties. I am obsessed and unheathily fixated on my CEA's. However, unlike Bert, my CEAs are predictive. Try to remember that his haven't been. Bert is probably one of the "outliars" in a normal curve, a CEA anomoly. Maybe this stupid protein means absolutely nothing about Bert's disease. I don't know if I made either of you feel better, especially you Monika cause I know my mom freaks about my CEA's too (she begs the nurses not to tell me!), but try to think positively and remember that they may mean absolutely nothing for Bert. Nevertheless, both of you are always in my thoughts and prayers (your mom as well) and the Montreal connection is hoping the scans continue to go well (I'm sure they will:)).

    Now go and watch a good movie and enjoy your week-end! I'm trying to twists my friend's arm into seeing Wimbledon. He's a guy so wish me luck!

    Lots of positive thoughts to all of you,
    Andrea
  • Kanort
    Kanort Member Posts: 1,272 Member
    #12
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    Hi Monica,

    I think Bert and I are about on the same schedule. I finished Folfox in July also. I, too, will have a PET and CT scan in October, so I know how anxious that can make one.

    I had a colonoscopy on Wednesday and it was normal. My gastroenterologist took a biopsy of some flecks of tissue around my resection. I won't know the results of until the middle of the week. It seems like we are always waiting for one test result or the other.

    I will keep you and Bert in my thoughts and prayers. Keep us posted.

    Hugs,

    Kay
  • belinda25
    belinda25 Member Posts: 44
    #13
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    Hey Monika,

    I understand totally about the worrying! Its been so up and down for you guys and I just want to tell you to keep positive and try to hang in there, I hope that you can use the great advice that you give to others too :)

    Belinda
    xo

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