Anybody being treated for abnormal....

hummingbyrd
hummingbyrd Member Posts: 950 Member
edited March 2014 in Breast Cancer #1
Anybody out there being treated for abnormal tumor markers. My CEA and CA27.29 keep going up, have been since Dec 2001. All CT Scans negative, Bone scan negative and mammogram negative. I've tried Zeloda and can't take it, causes severe blistering of hands and feet.
Anyone with elevated markers please respond. I'd like to know what your MD thinks about it.
Thanks, hummb.

Comments

  • inkblot
    inkblot Member Posts: 698 Member
    #2
    Hi Hummb:

    How high are your markers? What is your doctor saying about it?

    I've never heard of anyone being "treated" for elevated markers when no cause is found. What would they treat?

    My doctor explained to me that marker testing is a new tool and is not 100% reliable. Many things can contribute to rises, such as other benign diseases, smoking, certain medications, large doses of certain supplements, etc.. She said that if markers rise, they begin to look for a cause but that sometimes, no cause can be found, particularly when there are no symptoms present.

    Aside from perhaps getting another opinion, I don't know what to advise. Just try to roll with it for now. A good friend had a spike or two in her markers and they were never able to find any cause. They had her come in every 6 weeks, instead of the ususal every 3 months, to keep a close check on it. Hers returned to normal range and have remained there since. Go figure.

    Since you have several other health problems, is your onc aware of everything you take? If not, do let him/her know. One of you meds may be contributing in some way.

    There's some good info on markers at: www.nci.nih.gov At top of page, choose Types of Cancer. Then choose Breast Cancer. Then choose Screening/Tests. Tumor markers will be the last item, I believe, on the left side of the page. Hope that helps some.

    Stay well and try not to worry too much.

    Love, light and laughter,
    Ink
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #3
    inkblot said:

    Hi Hummb:

    How high are your markers? What is your doctor saying about it?

    I've never heard of anyone being "treated" for elevated markers when no cause is found. What would they treat?

    My doctor explained to me that marker testing is a new tool and is not 100% reliable. Many things can contribute to rises, such as other benign diseases, smoking, certain medications, large doses of certain supplements, etc.. She said that if markers rise, they begin to look for a cause but that sometimes, no cause can be found, particularly when there are no symptoms present.

    Aside from perhaps getting another opinion, I don't know what to advise. Just try to roll with it for now. A good friend had a spike or two in her markers and they were never able to find any cause. They had her come in every 6 weeks, instead of the ususal every 3 months, to keep a close check on it. Hers returned to normal range and have remained there since. Go figure.

    Since you have several other health problems, is your onc aware of everything you take? If not, do let him/her know. One of you meds may be contributing in some way.

    There's some good info on markers at: www.nci.nih.gov At top of page, choose Types of Cancer. Then choose Breast Cancer. Then choose Screening/Tests. Tumor markers will be the last item, I believe, on the left side of the page. Hope that helps some.

    Stay well and try not to worry too much.

    Love, light and laughter,
    Ink

    Thanks Ink,
    My CEA is 147 and my CA 27.29 is 96. These have been on the rise since Dec 2001 with all scans neg. It is rather hard to treat what you can't find. My MD says it's a puzzling thing. I am going to run it past docs at MDAnderson, other than that what's a girl to do? I don't smoke, haven't changed supplements any, I do have other conditions that could contribute, Sarcoid in particular, but all seems stable.
    I will check out website to see if they have any additional info. and thank you for the reassurance. God bless. hummb
  • ktinkey
    ktinkey Member Posts: 170
    #4
    Terri,

    Well, I am on the other end of that equation. My cancer has started to grow again and my CA27.29 is going down! The last test was down to 30 and 38 is considered normal. I asked my oncologist about it and she said for some unknown reason some people's tumor markers are no indication of what is going on in your body. She had one patient just like you, who's tumor markers were very high and they could find no reason for it, so the patient fired her (my oncologist is female). Since a tumor marker is indicative of a protein that is spilled into the blood from a cancer cell, it would make sense that it should be a very reliable test and is for most people. And then there are people like us - some too high and some too low. My oncologist says I am the best predictor of my own body. I know when something just doesn't feel right. Checkups are the best policy and our routine scans. Listen to your inner voice (since I know you and know your beliefs, the Holy Spirit to us). He has never failed us yet. Medicine is great, but there is only one Great Physician who never makes a mistake. I hope this helps a little bit, knowing you are not alone.

    God Bless,
    Kathy
  • maggs
    maggs Member Posts: 164
    #5
    Hi, Hummingbird, it's me, Maggs! It's good to see you posting...I thought maybe you were so well you stopped posting! You know I have the same problem with those mysterious markers? Did you know my CA 27.29 went DOWN 40 points around October, when I lost 10 pounds, which I worked hard to lose throught diet and exercise? Then the CA 27.29 went up again 45 points in November. Also, I think my blood pressure was low during this period! Go figure...
    In limbo too, with many questions--Maggs
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #6
    maggs said:

    Hi, Hummingbird, it's me, Maggs! It's good to see you posting...I thought maybe you were so well you stopped posting! You know I have the same problem with those mysterious markers? Did you know my CA 27.29 went DOWN 40 points around October, when I lost 10 pounds, which I worked hard to lose throught diet and exercise? Then the CA 27.29 went up again 45 points in November. Also, I think my blood pressure was low during this period! Go figure...
    In limbo too, with many questions--Maggs

    Hiya Kathy and Maggs, long time no chat. Sure do miss that! Thanks for the input, I'm sorry to hear about the tumor growth Kathy, will definately pray for you. Baylor College of Med called and told me they don't even do TM's. Doc says of no value because they are so unpredictable and unreliable. Said all they do are drive women nuts. So, I'm with you Kathy, if it ain't broke don't fix it, and if it is broke the good Lord will let me know.
    I miss you ladies, take care and God bless.
    AND no Maggs, I'm not to healthy to post, LOL. As a matter of fact, right now I've got pneumonia. If it's not one thing it's something else! LOL hummb
  • cathyann
    cathyann Member Posts: 26
    #7
    My tumor markers were always low even when I had the cancer. it went from 18 to 33 in the past 3 months and my oncologist wants to do one again at 4 weeks. I am a bit concerned. does anyone know how much effect diet has on the levels? what in the diet could cause the level to rise? how about alcohol?

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