CEA increasing

Cac466
Cac466 Member Posts: 12
in Colorectal Cancer #1

Hi - I’m new to this board but appreciate the support. I was diagnosed in 2014 with IIIb rectal cancer. Did the standard chemo, chemo radiation and the resection with ilostomy since reversed. in 3016 then 2017 had mets to lung, both treated surgicallY. I had clean CT’s this past July and Oct, but have a steadily rising CEA. Historically my highest wS was 2.2 at diagnosis and until this past July always stayed below 2. Then July was 2.9, Oct was 6 and yesterday was 9.8. I’m a bit panicked and a bit resigned to expect another mets. Yet after reading the various CEA threads here I reaalized I may be even more concerned if my ct is clean ( will find out Monday) and if my oncologist dismisses the CEA trend As I know he does not consider it that reliable. What other measures or tests would you as a collective group push for? My head just in a dark space today. Thanks for any feedback

 

 

Comments

  • Tunadog
    Tunadog Member Posts: 235 Member
    #2
    PET/CT Scan...

    A PET/CT Scan should tell the story.

    Good Luck

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #3
    A PET scan is usually the

    A PET scan is usually the best. CTs or MRIs are also helpful. CEA can be very useful for some people and not at all for others. It's subjective.

    Jan 

  • Cac466
    Cac466 Member Posts: 12
    #4
    JanJan63 said:

    A PET scan is usually the

    A PET scan is usually the best. CTs or MRIs are also helpful. CEA can be very useful for some people and not at all for others. It's subjective.

    Jan 

    Thank you both - I’ve been

    Thank you both - I’ve been wondering how hard to push for PET as he doesn’t like the constant radiation (I’m 51) but I’ve felt something looming ever since Oct # increase - and then the constant worry takes away from my 3 month free NED sensation - which honestly could be a whole other thread - as I find it impossible to believe next recurrence isn’t looming. I’m strong and cheerful and normal on outside but no- one even close to me understands the sense of pending upheaval and looming dread. I’ve been lucky that I’ve pushed through most of my treatments without the outside world seeing what I know and feel  ( esp constant lifestyle change from Ostomy reversal ) -  but I still enjoy life and put up a good front. This weekend not so much as I wait for news 

    ps - sorry for typos from my phone use

     

     

  • zx10guy
    zx10guy Member Posts: 273 Member
    #5
    From your initial post, are

    From your initial post, are you saying you already had a CT scan and are waiting on the results?  If so, I would wait to see what the report says before panicing.  But even if the CT scan shows all clear, I would consider pushing for the PET based on your history.  How many scans have you had in the past year?  What's your scan schedule interval?  3 months?  6 months?

    I don't know if you ran across my thread about my CEA journey last year.  But I've lived through and still am living through high CEA readings.  So far nothing has been found and I've had every test possible short of going back in and doing exploratory surgery to visually look for something.  Some people just have increases in CEA for other reasons.  In my chase for answers, it seems thyroid issues can raise CEA to the levels we're talking about an autoimmune/rheumatic issues can also create CEA problems.

  • Cac466
    Cac466 Member Posts: 12
    #6
    Thank you for the input And I

    Thank you for the input And I had been reading of your high levels and allowing me to keep fingers crossed for good but unsettling news.  I’m on 3 month lab and CT schedule and last surgery (thoracotomy) was 4/17 with 2 sequences of scanning since showing clear but the rapidly and unusual for me cea increasing at same time as those clean scans.

    I had my scan yesterday,  and I will meet my oncologist on Monday. So...  Ativan, exercise activity and this forum occupying my weekend!

    thank you all and I’m sorry I had not discovered this forum earlier in my journey

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #7
    Cac466 said:

    Thank you for the input And I

    Thank you for the input And I had been reading of your high levels and allowing me to keep fingers crossed for good but unsettling news.  I’m on 3 month lab and CT schedule and last surgery (thoracotomy) was 4/17 with 2 sequences of scanning since showing clear but the rapidly and unusual for me cea increasing at same time as those clean scans.

    I had my scan yesterday,  and I will meet my oncologist on Monday. So...  Ativan, exercise activity and this forum occupying my weekend!

    thank you all and I’m sorry I had not discovered this forum earlier in my journey

    I had 4 PET scans following 4

    I had 4 PET scans following 4 CT scans in a 12 month period, mostly in 2015. Yes it's a lot of x-rays, but it still beats missing metastasis, in my book.......................Dave

  • KarenMG
    KarenMG Member Posts: 109
    #8

    Reading this makes me wonder if I should be more worried than I already am! My CEA jumped up from 10.3 at the end of October to 30 on November 30, to 94.9 on Jan 4th to 131 yesterday! And people here are panicking over 9.8? I guess I'm screwed, I don't know.

    My last 2 CT scans showed increase in growth of tumors in my liver. I am posting further about those scans today but just had to comment...

  • zx10guy
    zx10guy Member Posts: 273 Member
    #9
    Cac466 said:

    Thank you for the input And I

    Thank you for the input And I had been reading of your high levels and allowing me to keep fingers crossed for good but unsettling news.  I’m on 3 month lab and CT schedule and last surgery (thoracotomy) was 4/17 with 2 sequences of scanning since showing clear but the rapidly and unusual for me cea increasing at same time as those clean scans.

    I had my scan yesterday,  and I will meet my oncologist on Monday. So...  Ativan, exercise activity and this forum occupying my weekend!

    thank you all and I’m sorry I had not discovered this forum earlier in my journey

    You're welcome.  Here's

    You're welcome.  Here's hoping your scan is all clear.

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited January 2018 #10
    KarenMG said:

    Reading this makes me wonder if I should be more worried than I already am! My CEA jumped up from 10.3 at the end of October to 30 on November 30, to 94.9 on Jan 4th to 131 yesterday! And people here are panicking over 9.8? I guess I'm screwed, I don't know.

    My last 2 CT scans showed increase in growth of tumors in my liver. I am posting further about those scans today but just had to comment...

    Karen,

    Karen,

    Not to minimize your situation, but it's not the same as the OP's situation.  You're currently dealing with active tumors/metastatic spread.  The OP is currently NED is worried whether there might be another recurrence.  Two different situations.

  • KarenMG
    KarenMG Member Posts: 109
    #11
    Oh thanks zx10guy, I didn't

    Oh thanks zx10guy, I didn't realize.

    What does NED stand for, I don't know all the abbreviations used here yet.

    Sorry if I stuck my nose in the wrong place...

  • Bunny822
    Bunny822 Member Posts: 23
    edited January 2018 #12
    NED

    No evidence of disease

     

  • Cac466
    Cac466 Member Posts: 12
    edited January 2018 #13
    Thank you all for the

    Thank you all for the feedback as this is the only place I can even talk through these worries without unduly worrying loved ones.  Much much appreciated

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #14
    KarenMG said:

    Reading this makes me wonder if I should be more worried than I already am! My CEA jumped up from 10.3 at the end of October to 30 on November 30, to 94.9 on Jan 4th to 131 yesterday! And people here are panicking over 9.8? I guess I'm screwed, I don't know.

    My last 2 CT scans showed increase in growth of tumors in my liver. I am posting further about those scans today but just had to comment...

    Abbreviations

    I'm still learning, and I've been in this for five years. 

    What does OP mean? zx said, and I quote 'The OP is currently NED...'   Obviously it means the person posting, but I'm trying to figure out o and p. Oh, is it original poster?  

    EDIT:

    And I'm obviously still learning where to put my posts, as this was supposed to be under Karen's post. HA! I'm such a nelly.

    Tru 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #15
    taking action based "on numbers"

    I would look for heavier hitters in the oncology business.  There's a lot of risk there on CEA alone: repeated CEA elevation above 5, a rising CEA series for 6 months, CEA more than doubled.   

    If they took enough blood data and are well read/informed, examinations and several blood panels may further define the risk by confirming or eliminating other more "benign" possibilities. NCCN guidelines for several years have acknowledged two month intervals maybe superior to a three month interval for stage 3 patients starting out.  Now, a more diligent dr might have ordered blood tests at one+ month intervals, or at least, one test sooner once you were over 5, with a repeated rise, and more than doubled. 

    Some doctors will say you can't treat a number (CEA etc).  This is most true for interventional radiologists, who have to aim.  Oncologists can "treat blood numbers" but don't want to be premature with heavy chemo and they usually treat based on images.   The truth is that they can and sometimes do treat based on blood markers.  Some of my wife's mets are hard to scan, but no one doubts they are there - she is treated with "lots of numbers" with occasional scans.

    Some seriously mCRC patients have had good success modifying oral chemo (e.g. Xeloda or UFT) with celecoxib and other adjuncts.  My wife is one of these, shot through with likely mets/seedlings from para aortic lymph nodes (removed 2011); unbiopsied chemo reactive lesions in lungs and liver.  But we did start early on.  

    When my wife still had better CEA numbers than yours (post 1st surgery, pre 2nd surgery), we were pulling blood tests every 3 weeks and improving the "other adjuncts" part.

  • Cac466
    Cac466 Member Posts: 12
    #16
    Hi folks - I posted last

    Hi folks - I posted last weekend a bit panicked and resigned based on rising CEA as i’ve Had recurring lung mets. So yes, CT confirmed more suspicious modules and PET scheduled, and then we will hit with radiatio.

     

    Now - today I’m actually fat more concerned, traumatised and need  advice for sister who has  more recent CRV (9/16) . She was stage 3b and finished chemo 6’17 after a tough struggle with allergic reactions to Folfox.

     

    today’s CT and MRI suggested 2 spots on liver. Dr ordering a biopsy on suspicious  met ( maybe 2) . What is normal course of treatment would your collective wisdoms advise if 2 mets are positive?

     

    I’m feel bit clueless as Liver mets and colon cancer different than my experience with rectal and lung mets so would really appreciate any guidance so I can help her.

     

    regards

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #17
    Everyone is different so I

    Everyone is different so I don't know that you can get a definitive answer for your sister's next steps. I've never had spots on my liver so I have no suggestions for her. The thing is that any mets are still colon or rectal cancer, despite where they're located, so any chemo that works for colon or rectal cancer would work for mets no matter where they are is how I understand it.

    It seems like everyone gets Folfox at some point but I don't remember anyone saying that it was helpful. I'm probably wrong about that. I just really hate it as a chemo drug, it's so hard on a person. It gave me blood clots and one went to my lung- pulmonary embolism- and I was lucky not to have died. I'd only had 6 rounds of it and was having such a hard time that I was going to tell my onc I wasn't going to take it anymore but had the PE two days before I'd have seen her to tell her that. Instead I was in intensive care in a coma with a neurologist telling my husband and daughter that I would have brain damage after, it was just a matter of how bad. 

    I hope they can find an immunotherapy chemo that works for her. That's the latest in cancer fighting.

    Jan

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #18
    FOLFOX

    Yes Jan, FOLFOX is definitely hard on the body, but I have no dount it is helpful, to some maybe more than others. I had FOLFOX along with 5FU Pump, then six weeks of Radiation and 24/7 5FU.  

    Other than my one recurrance in the liver, I sit here almost four years NED. 

    Was it the FOLFOX? 5FU? Radiation? Was it a conmibation of some or all? I will never know; but what I do know is that I am grateful I suffered through it all, because I am alive and living life between each test (which is coming up next week). 

    I still say its dumb luck who lives and who passes. I've seen so many here fighting so hard, doing everything they can, trying everything possible, and they succumb to this dreadful disease. It breaks my heart that there is no cure for it at the moment. 

    Tru

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #19
    Trubrit said:

    FOLFOX

    Yes Jan, FOLFOX is definitely hard on the body, but I have no dount it is helpful, to some maybe more than others. I had FOLFOX along with 5FU Pump, then six weeks of Radiation and 24/7 5FU.  

    Other than my one recurrance in the liver, I sit here almost four years NED. 

    Was it the FOLFOX? 5FU? Radiation? Was it a conmibation of some or all? I will never know; but what I do know is that I am grateful I suffered through it all, because I am alive and living life between each test (which is coming up next week). 

    I still say its dumb luck who lives and who passes. I've seen so many here fighting so hard, doing everything they can, trying everything possible, and they succumb to this dreadful disease. It breaks my heart that there is no cure for it at the moment. 

    Tru

    So true. I just hate it, I

    So true. I just hate it, I guess. It almost killed me and was miserable until it did so I'm very negative about it. I don't know if it did anything for me because it was being used as a mop up chemo and a year later I had mets in my lung.

    Jan

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