Opinions needed PLEASE!....CEA rising...scans clear...chemo or not?

idlehunters
idlehunters Member Posts: 1,787 Member
I recently posted that I am getting my CEA tested weekly because it is rising...every test a little more. from 5.0 to 10.5 as of last Monday. However, my PET/CT shows nothing..all clear. I have 2 different teams of docs..with 2 different opinions...and I don't know who to listen to. Here are THEIR opinions but i REALLY want to hear all of yours.

Onc since DX: Last week he said to do another CEA this past Monday... if above 10...that pretty much rules anything else out except recurrance. Then he went on vacation and left me hanging. Didn't know if I should continue with my maintenance chemo last Tues since Onc wasn't around to advise so I declined..didn't see the point if it ain't working. They made me another appointment for maintenance chemo tomorrow..again, whats the point??? Do you all see a point in having it??? This will be 3 weeks in a row with no chemo of any kind and avastin was stopped 2 months ago. Onc said...before he left..if it rises above 10 then we will need to start chemo again...and a new chemo....

Radiology Oncologist from St. Louis Univ Cyberknife- He did my last 2 PET/CT's.... checked the last scan 3 times...just to make sure he didn't miss anything.... Not even nothing there that would make him raise an eyebrow. He says that even though CEA numbers are rising...you can't treat a number! He can't treat what he can't see. I have not had another colonoscopy since DX...which has been just over 2 years ago... so he ordered me one for Thursday and if that is clear he wants to do a CT. He is suggesting a "wait and see" approach.

I have an issue with "wait and see"..... I'm scared to WAIT too long and have things all of the sudden pop up and be out of control. I also have an issue with doing chemo when there is nothing there to treat. I mean.... lets say a tumor pops up somewhere and can be treated with RFA or even surgery instead of chemo...do I go that route? OR... do I change to a different maintenance chemo and try that for a while????...I DON'T KNOW!!! And I don't understand why my Onc would want to start a "new" chemo when I have had such success with Folfiri.... I didn't stop taking it because it stopped working... I stopped because it worked SO WELL and got me NED.

I have read that it is bad for a stage IV person to just stop everything....and do no chemo at all..not even maintenance...because it can come back with a vengence(sp?) Well, ain't that what its doing now and I HAVE BEEN on maintenance chemo!! I have also read maintenance chemo is not even considered by some docs.

So..tomorrow..I can go ahead with my old maintenance chemo.... that may..or may not be working..how do I know if I don't know why CEA is rising..FOR SURE. OR..do I skip it and wait for results of Cololoscopy/CT on Thursday/Friday and figure it out from there...what if those are clear??? I also read where they will open your tummy and look around for what they can't see on scans.... for some reason that don't seem right. Does it?

Anyway, my mind is on overflow trying to decide what to do so I thought maybe ya'll could put your 2 cents in and maybe that would help me sort things out. I appreciate any input you can give me. take care

Jennie
«134

Comments

  • This comment has been removed by the Moderator
  • scouty
    scouty Member Posts: 1,965 Member
    Oh my
    I totally understand your squirming Jennie. That is a pretty significant climb in a short timeframe. I hear you about your "maintenance chemo" not working. I say skip it and get that scope and CT ASAP. Ain't no way a radiologist is going to do a surgeon's job of opening you up! You can take that to the bank. Here's to a cancerour polyp they can remove during your scope!

    Keep us posted. And remember girlfriend we got some celebrating to do in Chicago this October!

    Lisa P.
  • jjaj133
    jjaj133 Member Posts: 867 Member
    Oh Jennie, I am so sorry, .I
    Oh Jennie, I am so sorry, .I can't advise you, but i can share this with you. Every single time i have had surgery they found more cancer that did not show up on pt/ct. Even when the colon was operated on. I would be very cautious about stopping chemo. It may be keeping it at bay at least until the dr. does the tests.
    Listen to your gut!!!
    Hugs to you my friend.Judy
  • Crow71
    Crow71 Member Posts: 679 Member
    Hey Jennie
    Sorry to hear that the cea continues to rise. I agree with you that there doesn't seem to be much point in staying on the maintenance chemo. It's irritating that you are supposed to put this decision off until her gets back from vacation.

    I like the way your St. Louis doc is thinking. And I really like the way you are thinking this through. Get more info. "Wait and See" is not doing nothing in this case. It's taking time to do the tests/procedures and gather more info. Sometimes you just have to guess about what's going on in your body, but hopefully these tests will give an accurate picture.

    If the colonoscopy and CT come back clear, I'd say that's a good thing. It doesn't give you an answer about you cea rise, but that is better than discovering some new damn big tumor. I suppose the surgeon could make a little cut and drive a camera all around your insides looking for trouble. My surgeon did this prior to my resection last year. No trouble at all. Out patient.

    Good luck tomorrow. I'll be thinking about you.

    Roger
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Bummer
    Sorry you are going through all of this. It seems to me that you should wait for your colonoscopy to find out what is going out there since you have ruled out other things. Seems you should have had this done before now but maybe your doctor has different ideas on why he waited. Praying that all goes well for you and that the rise is nothing significant. Chemo is so hard to decide on what to do. If you feel comfortable doing it and not feeling ill effects then do it if you wish. You have been through so much and know you will get through this as well.

    Kim
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    unknown said:

    This comment has been removed by the Moderator

    Hey Graci..
    LOL.... I read back my post and you are right.... I am answering my own questions!!! I think I know what I think I just wanna make sure you all think what I think....LOL... and right now I think I am thinking tooooooo much!!!!

    hugs.... Jennie
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    breathe, breathe, breathe
    oh jennie,

    its not the best news, is it. Your ONC is on holidays, well when you see them next stress hte point you hope she had a wonderful relaxing time and that you have been going through your own hell trying to work out what to do with out there input.

    its your life, your health, I think they should provide some excellent quality backup when away on holidays. they have let you down, don't let them off the hook, they better give you the best advice and service possible from here on in.

    if might sound trite, but meditate and be cool and keep your beautiful smile smiling,

    you have to believe you will beat this.

    I beleive being relaxed and positive and NOT stressed is my top priority.
    Now I let my wife win all the arguments, only occasionally here am I stubborn for what I believe in.

    You cannot fight this curse if your bodies fihgt or flight mechanisms are kicked in.
    Now the worry about the rising CEA must have been for awhile.

    Worry and fear are our cancers friends.

    Peace and love are cancers enemies. smile at your cancer, it does not have a chance, and the only power it has over your mind is what you let it.

    Their are lots of options around, have a vege juice, enjoy some tofu for lunch, visit a naturopath. Now your pesky cancer maybe raising the stakes, I say fight back peacefully.

    Lets use the Ghandi model peaceful non cooperation. Its less aggressive then fight back.

    Only you know the best way for you.

    My current beliefs have been re-inforced since reading a mans search for reason and then the biology of beleif by bruc lipton.

    hugs,

    Pete ( smiling )
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    scouty said:

    Oh my
    I totally understand your squirming Jennie. That is a pretty significant climb in a short timeframe. I hear you about your "maintenance chemo" not working. I say skip it and get that scope and CT ASAP. Ain't no way a radiologist is going to do a surgeon's job of opening you up! You can take that to the bank. Here's to a cancerour polyp they can remove during your scope!

    Keep us posted. And remember girlfriend we got some celebrating to do in Chicago this October!

    Lisa P.

    Hey Lisa...
    Thanks for your 2 cents!!! and you can bet your sweet bippy we will be celebrating in Chi town!!!! Hugs!!!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    jjaj133 said:

    Oh Jennie, I am so sorry, .I
    Oh Jennie, I am so sorry, .I can't advise you, but i can share this with you. Every single time i have had surgery they found more cancer that did not show up on pt/ct. Even when the colon was operated on. I would be very cautious about stopping chemo. It may be keeping it at bay at least until the dr. does the tests.
    Listen to your gut!!!
    Hugs to you my friend.Judy

    Hey Judy!
    I just don't know what to think about the chemo..... I need guidence and I just can't believe my Onc left no one to take his patients while he is gone!!!! I am listening to my gut for sure...since that and you guys is all I got!!! Thanks girlfriend!

    Hugs... Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Crow71 said:

    Hey Jennie
    Sorry to hear that the cea continues to rise. I agree with you that there doesn't seem to be much point in staying on the maintenance chemo. It's irritating that you are supposed to put this decision off until her gets back from vacation.

    I like the way your St. Louis doc is thinking. And I really like the way you are thinking this through. Get more info. "Wait and See" is not doing nothing in this case. It's taking time to do the tests/procedures and gather more info. Sometimes you just have to guess about what's going on in your body, but hopefully these tests will give an accurate picture.

    If the colonoscopy and CT come back clear, I'd say that's a good thing. It doesn't give you an answer about you cea rise, but that is better than discovering some new damn big tumor. I suppose the surgeon could make a little cut and drive a camera all around your insides looking for trouble. My surgeon did this prior to my resection last year. No trouble at all. Out patient.

    Good luck tomorrow. I'll be thinking about you.

    Roger

    hey hottie roger dodger!!!!!...
    I've been really wondering about that "exploratory" stuff. Glad to hear its a simple procedure like that cause I may be needing it.... Thanks Rog!!!!

    Hugs.... Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Bummer
    Sorry you are going through all of this. It seems to me that you should wait for your colonoscopy to find out what is going out there since you have ruled out other things. Seems you should have had this done before now but maybe your doctor has different ideas on why he waited. Praying that all goes well for you and that the rise is nothing significant. Chemo is so hard to decide on what to do. If you feel comfortable doing it and not feeling ill effects then do it if you wish. You have been through so much and know you will get through this as well.

    Kim

    Hey Kim....
    You know what..... you posted a reply to my very first post here on CSN...and here you are STILL with me....... Thank you Kim... I appreciate you! I agree about the colonoscopy. I didn't realize I should have one until people here posted their frequency. I did ask my Onc an he said "with ll the other stuff you got going on THAT is just not important and last on te list" funny thing is I was NED when he said that...what other stuff???? HUH! Might be time to be checking into a 3rd opinion and a new Onc.....we'll see...... Take care Kim

    Jennie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Wish I knew!
    I don't know the answers, but I sure hate this uncertainty for you.

    *hugs*
    Gail
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    breathe, breathe, breathe
    oh jennie,

    its not the best news, is it. Your ONC is on holidays, well when you see them next stress hte point you hope she had a wonderful relaxing time and that you have been going through your own hell trying to work out what to do with out there input.

    its your life, your health, I think they should provide some excellent quality backup when away on holidays. they have let you down, don't let them off the hook, they better give you the best advice and service possible from here on in.

    if might sound trite, but meditate and be cool and keep your beautiful smile smiling,

    you have to believe you will beat this.

    I beleive being relaxed and positive and NOT stressed is my top priority.
    Now I let my wife win all the arguments, only occasionally here am I stubborn for what I believe in.

    You cannot fight this curse if your bodies fihgt or flight mechanisms are kicked in.
    Now the worry about the rising CEA must have been for awhile.

    Worry and fear are our cancers friends.

    Peace and love are cancers enemies. smile at your cancer, it does not have a chance, and the only power it has over your mind is what you let it.

    Their are lots of options around, have a vege juice, enjoy some tofu for lunch, visit a naturopath. Now your pesky cancer maybe raising the stakes, I say fight back peacefully.

    Lets use the Ghandi model peaceful non cooperation. Its less aggressive then fight back.

    Only you know the best way for you.

    My current beliefs have been re-inforced since reading a mans search for reason and then the biology of beleif by bruc lipton.

    hugs,

    Pete ( smiling )

    Hey Pete...
    Thanks for your 2 cents too.... I am taking in all this advice and comments to help me decide where to go next. I do see a ND.... take some supplements.... and juice daily. My best to you and yours! Take care

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    tootsie1 said:

    Wish I knew!
    I don't know the answers, but I sure hate this uncertainty for you.

    *hugs*
    Gail

    Hey Gail....
    You're such a sweet person......thanks for your concern. take care

    Jennie
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Well....
    Jennie, I am still pretty new to all this so I don't have too much of an idea what to say. What I do think about....your CEA rising - so why? It seems I heard there is another reason for the CEA to rise and I bet you or someone here knows why......I don't know about opening you up to look around for what they don't see. What if it's somewhere they can't see it? (but I'm sure it's not!!!!).....I think when onc gets back you deserve some better answers. And the results of the colonoscopy and ct. I don't blame you for the wanting answers. Take lot's of care!!

    Love and hugs, Gail
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Jen
    Well, you know my take:) We've talked it over.

    I'll be behind you whichever way you turn.

    -Craig
  • John23
    John23 Member Posts: 2,122 Member
    Hey, remember this?

    I posted this way back in September 16, 2010 - 10:55pm



    ----------------------------------------

    To: Jennie -


    Whew.

    Re:
    "my peeps on the Cancer Board say that their docs tell them that
    dying tumors...dying cancer cells..can cause a rise in CEA.
    He told me that is absolutely NOT true. He siad when cancer cells
    are dying they have less or no CEA in them at all... They are DEAD.
    can't measure the antigen in something dead. "


    Oh? Ok.:

    "Chemotherapy and radiation therapy can cause a temporary rise in
    CEA due to the death of tumor cells and release of CEA into the
    blood stream. Benign disease does not usually cause an increase
    above 10 ng/ml."
    From: http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

    ---------------

    "The data presented in this study support both lines of
    thought concerning CEA production; however, these results
    strongly uphold the theory of CEA release by dying cells."
    From: http://etd.lib.ttu.edu/

    -------------

    "recent observations of CEA upregulation in CRC cell lines by cellular stressors such as
    hypoxia9 or exposure to cytotoxic drugs such as 5-fluorouracil.10,11 Moreover, it is plausible
    that apoptotic release of CEA from dying cells could trigger transient increases"
    From: http://cigjournals.metapress.com/index/8278xq0v077w2166.pdf

    -------------

    "One possible explanation for the rise in marker levels among
    patients with regressing tumor is that the dying cells may
    release large amounts of marker into the blood."
    From: http://www.faqs.org/abstracts/Health/Tumor-marker

    ------------

    "Colorectal cancer patients whose CEA blood tests rise at the
    beginning of chemotherapy and then fall (CEA flare) do better
    than patients with a consistently rising CEA. CEA flares don’t
    necessarily predict worsening cancer.

    Compared to patients with consistently rising carcinoembryonic
    antigen (CEA), patients who had a CEA flare had more tumor
    shrinkage, longer time before their cancer got worse, and longer
    survival time."
    From: http://fightcolorectalcancer.org/research_news/2009/

    ------------

    "If we had followed this ASCO guideline of measurement of CEA
    level every second month, one of the surge patients would have
    been incorrectly interpreted as having experienced treatment
    failure, and therapy would have stopped.
    The patient would have
    been incorrectly removed from the treatment, giving her a time to
    progression of 11.2 months and 27.3-month survival. To avoid
    inappropriate therapy changes based on clinical misinterpretation
    of a CEA surge as an impending disease progression, we suggest
    that future ASCO guidelines should mention the possibility of CEA
    surge. Furthermore, we suggest that no therapy changes should be
    based on CEA levels alone at all during the first 6 months of therapy.

    An initial rise in CEA level during effective chemotherapy in
    colorectal cancer patients may not always indicate progression of
    disease but may be a transient CEA surge in patients responding
    to chemotherapy.
    In monitoring tumor responses and in future
    guidelines for the use of tumor markers, the possibility of a
    surge phenomenon should be taken into account. This will
    especially be important if a new, more effective treatment with
    high response rates or rapid tumor destruction is introduced. "
    From: http://jco.ascopubs.org/content/21/23/4466.full

    -------------

    Those last paragraphs (note bolded text) say more than enough regarding
    CEA and mistakes that can be made with treatment scheduling.

    And Re:

    "He told me that is absolutely NOT true. He siad when cancer cells
    are dying they have less or no CEA in them at all... They are DEAD.
    can't measure the antigen in something dead. "

    Maybe you oughta' shop around for a new Onco..... You deserve
    better care than an idle assumption.

    (I wanted to re-phrase that last statement....... My extreme anger at
    physicians that are too busy making money to do research, was showing).

    John

    ---------------------------------


    There. How was that?

    It's like Deja'Vu all over again.

    We always manage to worry about everything after a diagnosis
    of cancer; I don't think it ever stops. (not for me, anyway)

    Think good things!

    John
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    John23 said:

    Hey, remember this?

    I posted this way back in September 16, 2010 - 10:55pm



    ----------------------------------------

    To: Jennie -


    Whew.

    Re:
    "my peeps on the Cancer Board say that their docs tell them that
    dying tumors...dying cancer cells..can cause a rise in CEA.
    He told me that is absolutely NOT true. He siad when cancer cells
    are dying they have less or no CEA in them at all... They are DEAD.
    can't measure the antigen in something dead. "


    Oh? Ok.:

    "Chemotherapy and radiation therapy can cause a temporary rise in
    CEA due to the death of tumor cells and release of CEA into the
    blood stream. Benign disease does not usually cause an increase
    above 10 ng/ml."
    From: http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

    ---------------

    "The data presented in this study support both lines of
    thought concerning CEA production; however, these results
    strongly uphold the theory of CEA release by dying cells."
    From: http://etd.lib.ttu.edu/

    -------------

    "recent observations of CEA upregulation in CRC cell lines by cellular stressors such as
    hypoxia9 or exposure to cytotoxic drugs such as 5-fluorouracil.10,11 Moreover, it is plausible
    that apoptotic release of CEA from dying cells could trigger transient increases"
    From: http://cigjournals.metapress.com/index/8278xq0v077w2166.pdf

    -------------

    "One possible explanation for the rise in marker levels among
    patients with regressing tumor is that the dying cells may
    release large amounts of marker into the blood."
    From: http://www.faqs.org/abstracts/Health/Tumor-marker

    ------------

    "Colorectal cancer patients whose CEA blood tests rise at the
    beginning of chemotherapy and then fall (CEA flare) do better
    than patients with a consistently rising CEA. CEA flares don’t
    necessarily predict worsening cancer.

    Compared to patients with consistently rising carcinoembryonic
    antigen (CEA), patients who had a CEA flare had more tumor
    shrinkage, longer time before their cancer got worse, and longer
    survival time."
    From: http://fightcolorectalcancer.org/research_news/2009/

    ------------

    "If we had followed this ASCO guideline of measurement of CEA
    level every second month, one of the surge patients would have
    been incorrectly interpreted as having experienced treatment
    failure, and therapy would have stopped.
    The patient would have
    been incorrectly removed from the treatment, giving her a time to
    progression of 11.2 months and 27.3-month survival. To avoid
    inappropriate therapy changes based on clinical misinterpretation
    of a CEA surge as an impending disease progression, we suggest
    that future ASCO guidelines should mention the possibility of CEA
    surge. Furthermore, we suggest that no therapy changes should be
    based on CEA levels alone at all during the first 6 months of therapy.

    An initial rise in CEA level during effective chemotherapy in
    colorectal cancer patients may not always indicate progression of
    disease but may be a transient CEA surge in patients responding
    to chemotherapy.
    In monitoring tumor responses and in future
    guidelines for the use of tumor markers, the possibility of a
    surge phenomenon should be taken into account. This will
    especially be important if a new, more effective treatment with
    high response rates or rapid tumor destruction is introduced. "
    From: http://jco.ascopubs.org/content/21/23/4466.full

    -------------

    Those last paragraphs (note bolded text) say more than enough regarding
    CEA and mistakes that can be made with treatment scheduling.

    And Re:

    "He told me that is absolutely NOT true. He siad when cancer cells
    are dying they have less or no CEA in them at all... They are DEAD.
    can't measure the antigen in something dead. "

    Maybe you oughta' shop around for a new Onco..... You deserve
    better care than an idle assumption.

    (I wanted to re-phrase that last statement....... My extreme anger at
    physicians that are too busy making money to do research, was showing).

    John

    ---------------------------------


    There. How was that?

    It's like Deja'Vu all over again.

    We always manage to worry about everything after a diagnosis
    of cancer; I don't think it ever stops. (not for me, anyway)

    Think good things!

    John

    are you a phd ?
    no not a doctor, but a pretty happy dude.
    its great info i missed before
    thanks, pete
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Jen
    Hey girlfriend, this took a lot of thinking before I could post, and heck I'm still thinking about it. I think definitely the colonoscopy, my surgery onc, said one year no longer then that for a colonoscopy after surgery, so this December I'll be getting my second one, so I highly recommend you definitely get that!! My ct scan is showing clear but my cea went up from 2.4, to 2.8, to 3.0 in the past 9 weeks, so I'm worrying, but my onc isn't (probably because I'm sick, dang this whatever I have crapola).
    I'm not sure about the chemo thing, I think I'd wait until the colonoscopy and the ct scans before deciding more vigorous chemo.
    Love at cha,
    Winter Marie
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Jennie ! you are exactly where I was 3 months ago!
    Remember? My pet was lighting nothing , but Cea increasing , then doctor order a ct scan which for certain things is more accurate and show some spots of just few milimiters that Pet cut not pick it up!.Then he put me on the same chemo again as it was stopped not for not working but just because after 5 rounds there was nothing in there!.
    So it does not mean necessarily you got a reoccurrence ,and I pray for that but I would suggest to have a CT scan! .
    Then if not images you will be sure about you are clear!.
    Hugs !