Trying Not To Panic

andreae
andreae Member Posts: 236
edited March 2014 in Colorectal Cancer #1
Hi everyone,

I will NEVER, EVER complain about my life being boring! When I live through this, I want to have the calmest, most predictable and dull life know to man...

Went to see my doc yesterday to make sure that all signals were a go for my chemo on Thursday. I was due to start last Tuesday but had to be hospitalized for three days for side effects and treatment got pushed back a week. So, a CEA was done and I'm up to 3.6 from 2.0. Now, I know that this is a slight elevation and CEA is not a reliable indicator, ect. But I'm panicked. My CEA has gone from 1.7 to 1.8 to 1.9 to 2.0 and now 3.6. The absolute numbers are low but the trend is disturbing me. When they discovered the mets. back in September my CEA had gone from 0.8 to 1.7 to 2.4. I told my onc that I was concerned and of course he brushed me off saying the "values were in normal range" but, low and behold, mets. were discovered when the CT was done. I'm pretty much freaking out but desperately trying to stay calm. The doctor's freaked too. He wants me to have a CT done NOW. I just get so tired of the rollercoaster sometimes. In January, he told me my next CT could be done in April after finals. And I felt great... I don't mind doing the chemo. It's just these assessments I can't stand - they completely disrupt my life. I planned my life till April (because that's when the CT was supposed to be) and now I got to do one A.S.A.P.. I just get so scared. I have only been on this protocol for 5 months... Can it be failing me all ready?

Thanks for letting me get it all out. I'm staying brave for my family, friends and academic career (I have an exam tomorrow so I'm studying) but had to vent.

Have a wonderful day everyone,
Andrea

Comments

  • pjenks57
    pjenks57 Member Posts: 112
    #2
    Dear Andreae: stay calm.. Breathe.. You will do just fine. THANK GOD for this place to vent. You are in my prayers.
  • jsabol
    jsabol Member Posts: 1,145 Member
    #3
    Dear brave (((((Andrea))))),
    What a trooper you are! I know that CEA's can do wierd things for all kinds of reasons, so let's hope for the best. It sure is hard to "go with the flow" with this disease, and you sure have more than your fair share excitement. I know what you mean about dull and predictable lives; I want mine back!
    Don't waste too much energy on what you can't control; hope the scan goes smoothly. You are one awesome person, sending positive thoughts your way. Regards, Judy
  • KrisS
    KrisS Member Posts: 229
    #4
    jsabol said:

    Dear brave (((((Andrea))))),
    What a trooper you are! I know that CEA's can do wierd things for all kinds of reasons, so let's hope for the best. It sure is hard to "go with the flow" with this disease, and you sure have more than your fair share excitement. I know what you mean about dull and predictable lives; I want mine back!
    Don't waste too much energy on what you can't control; hope the scan goes smoothly. You are one awesome person, sending positive thoughts your way. Regards, Judy

    Andrea- I am most definately not an expert on CEAs because mine has been completely normal despite mets etc. I am pretty certain that there have been reports of CEA going up some when tumor tissue is dying, however.

    Especially if your previous CT showed improvement, I would take a deep breath, sit tight until you get the results of that.

    Here is hoping/praying that all is well. You deserve it!

    Kris
  • rep801
    rep801 Member Posts: 26
    #5
    KrisS said:

    Andrea- I am most definately not an expert on CEAs because mine has been completely normal despite mets etc. I am pretty certain that there have been reports of CEA going up some when tumor tissue is dying, however.

    Especially if your previous CT showed improvement, I would take a deep breath, sit tight until you get the results of that.

    Here is hoping/praying that all is well. You deserve it!

    Kris

    I have also been told that tumor marker results may increase during the battle between the cells and the drugs.

    I have seen my CEA results bouncing around in the teens for 2 years now and my CTs show stability to some improvement.

    Don't focus on 1 measure but the results of all the tools.

    Bob
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #6
    Hey! Wow, you are still in school through all of this! That's awesome....good job. I am a little older than you, but not OLD. I am 33. I know how you feel and if you want to e-mail me, that would be great. I have been going through this for the last 2 years and recently went for my 2nd "checkup" following a recurrence last year (liver/surgery/round 2 of chemo, etc.) this time they found 2 3-4mm "spots" on my lung during my CT scan. Since they are so small they cannot tell what they are, they are too small to biopsy so I just have to WAIT till May and get another CT scan. It is like being in some kind of sadistic hell! I don't want to know this stuff! My CEA is normal, so I am clinging to that ray of light, and the thought that they may be scar tissue or something, ANYTHING, else. I'll take TB!! Anyway, I am a forest ranger and for the last 2 summers I have been on chemo. I am so looking forward to hiking, etc. this summer , cancer free and not having to deal w/ creepy chemo again! I am just keeping my fingers crossed that these things do not grow between now and May. If they stay the same, they assume it isn't cancer. Unfortunately, cancer does not respect our jobs, final exams, our loved ones, etc. I also feel like my life is in these little 3 month segments. I want to be able to plan things for September, or next year! All my friends are getting pregnant, and I cant. Anyway, it does no good to panic or freak out except lower your immunity. Try taking yoga, going for walks, drink a glass of wine, and if you need to talk, e-mail me!
  • spongebob
    spongebob Member Posts: 2,565 Member
    #7
    Ahoy, andreae -

    I have read the same thing agent (bob) talks about - that the CEA numbers can go up due to the protocol. Hang in there. We're all keeping you in our thoughts and prayers. You have way too much going on to worry about a CEA number. Focus all of that nervous energy on your test preps. KICK BUTT on it tomorrow.

    Well, I'm off to complete my own homework now.

    Be well, my friend

    - Sponge
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #8
    hey sweet andreae,

    www.cancerdecisions.com

    check it out. Maybe there is something else you can add on your own to beat this thing.

    I know, I hate the tests and the days leading up to the tests and the day of the tests....disruptive to say the least.

    Just keep us posted on the CT outcome ok?!

    My prayers are with you baby girl.

    peace, emily
  • Unknown
    Unknown
    #9
    Hi sweetheart! I think I've gone this route before and I'll go it again. I'm the neurotic in our family...remember my post about Bert's CEA going from a consistent .09 to in less than three weeks 7.7!!! I was a basket case (although if I don't mind patting myself on the back here pat, pat, pat, Bert would have never known it...you guys sure did though). After all the test were done, both CAT and PET Infusion came up negative for any cancer activity. Yup, we got those lung nodules but it appears that most are calcifications and the others too small from the PET to even register them...yet Bert's CEA remains between 5.9 and 6.1.

    Point being is you even sent me a post telling me not to worry and that CEA was not an absolute indicator of anything (yup, SpongeBob and everyone on this board did too...but that didn't really ease my anxiety...it sure eased Bert's though). So now I'm asking you to please take the wise advice that you gave me...not until everything is in and well reviewed is their any need to panic at this point. And heck Andrea, even IF there is something, it's so tiny they will nib it in the butt right away!!!!!

    CEA can be very worrisome, oh believe me I know. Even Bert's onc is just not comfortable with it remaining where it is...hence the reason Bert will have another PET on March 16 and his onc will be doing one every three chemo cycles, which is about every six weeks. But in the meantime, he is hanging in there at the elevated level and doesn't dwell on it...I try not to dwell on it, and you hang in there and don't dwell on it all the time either.

    Big Hugs and Lots of Love,
    Monika, the neurotic ex-Ottawaian CEA worrier now on the west USA coast who should also practice what she preaches (hehehe :-)

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