New here looking for support

supergirl20
supergirl20 Member Posts: 8
in Colorectal Cancer #1

Hi my mom was diagnosed with stage IV colon ca with liver mets Sept 2013. Had bowel resected no ostomy. 

Finished 12 rounds chemo now on xeloda with avastin. Her PET this May  2014 was NED

and CEA was down to 5 from 60.  Her bloodwork today at dr appt CEA up to 11.

Im worried she is doing awsome still works full time but i dont like CEA creeping up.

Just want to chat in a supportive enviornmemt. 

Comments

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #2
    Welcome to the forum!
     
    This

    Welcome to the forum!

     

    This is a place to express emotions with out fear.  This forum is also a great place to ask questions from themany that have been on a similar path.  A lot of good information is shared here.

     

    CEA is just of of several protein markers they use to measure cancer.  A CT/PT will have a more assured result.   My CEA has been 1125 and then back down to 2, and now 19.  So, CEA is a concern, and if she has previous experience that the CEA is a good marker, then start taking some serious measures. 

     

    Keep up the good fight!

    Best Always,  mike

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #3
    thxmiker said:

    Welcome to the forum!
     
    This

    Welcome to the forum!

     

    This is a place to express emotions with out fear.  This forum is also a great place to ask questions from themany that have been on a similar path.  A lot of good information is shared here.

     

    CEA is just of of several protein markers they use to measure cancer.  A CT/PT will have a more assured result.   My CEA has been 1125 and then back down to 2, and now 19.  So, CEA is a concern, and if she has previous experience that the CEA is a good marker, then start taking some serious measures. 

     

    Keep up the good fight!

    Best Always,  mike

    Welcome!
     Having a

    Welcome!

     Having a supportive daughter in her corner is a real gift to your Mom. Feeling good enough to work FT is no small feat.  

    CEA is best thought of in a pattern not a single result. It is not a good indicator for all.  If it is for your Mom, be insistent that it be repeated soon.  As Mike said, CT/PT scans provide more solid results. However, an elevated CEA often indicates concern before it shows up on a scan. Close follow up is the key.  

    Take a deep breath....cancer is a roller coaster ride.  Come here often....wonderful people with loads of experience.

    CM

  • Akroger
    Akroger Member Posts: 88
    #4
    Welcome Supergirl!

    If your mom is stage IV but NED, with a CEA of 11 and she's still working full time too, it sounds to me like she's doing fantastic. The biggest recommendation that I have for her (and you) is to try to avoid stress as much as possible, at work and elsewhere. Based on my mom's experience and what I've read on these boards here from others, stress (which messes with the immune system) is a major contributor to, and exacerbator of, cancer, My mom is also stage IV, diagnosed January 2013 with an inoperable tumor in her sigmoid colon, mets to lungs and liver, later discovered in the brain also. She's done Folfox, which was great for her, and now she's on irinotecan, which is working a little too well (keeping growth at bay but her health is suffering too). Her last CEA in June was 125 and may be a bit lower now. She's in pretty bad shape physically though; never took care of her health before and now she needs round-the-clock care and help.

    Encourage your mom to stay active, to be sure to allow herself lots of time for meditation, yoga, reading, or whatever else most relaxes her, and to take care of herself as much as she can. There are many, many people on this board who have made clear to me that it is quite possible to live a full, happy life even at stage IV.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    You have come to the right place

    You will find people across the baord as far as experience is concerned. 

    I too was NED after treatment, for about six months and then a liver met bumped me back up. I had that taken care of in April, and my CEA is back down into normal range. 

    I am doing great. 

    First step is your mum finding out why her CEA has jumped. I presume she is going to be having a CT and/or PET Scan.  

    Once you know what is happening, you can jump on it and start getting it fixed. For some, this is a constant which they live with.

    It doesn't have to be terribly bad news, just bad news. 

    A positive attirude goes an awful long way with this disease. I pray first this might just be an anomaly, but if not, that your mum will get sorted and be back to NED in no time. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Welcome

    Welcome to the group.  Glad to hear that your mom is doing well and that you are a very concerned daughter asking questions.  Although a rise in the CEA can be an indication that something is there, it doesn't always mean that because different things can cause a rise, like an infection, smoking, etc.  Even though there was nothing in the scan in May, it might take a couple months for something to show up.  She should ask her doctor if they should do another scan soon.  See what her doctor recommends and go from there, but a rise isn't always cancer.

    Kim

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #7
    Welcome.

    It's great that your mom has an advocate to help her through this terrible battle. The forum is a great place to ask questions. Keep notes so that you can ask the doctors, nurses and everyone involved in her healthcare EVERY question, until your satisfied  Push for tests and keep a positive attitude. 

     

    Yolanda

  • Nana b
    Nana b Member Posts: 3,030 Member
    #8
    Yolllmbs said:

    Welcome.

    It's great that your mom has an advocate to help her through this terrible battle. The forum is a great place to ask questions. Keep notes so that you can ask the doctors, nurses and everyone involved in her healthcare EVERY question, until your satisfied  Push for tests and keep a positive attitude. 

     

    Yolanda

    Welcome and yes sorry you are

    Welcome and yes sorry you are here. They didn't do a liver resection?    Most do.  I don't think it's too late to have it basd on pet scan markers.  Maybe be something to ask about.  

    Hope her CEA is a fluke.   Feel free to ask any questions, this board is pretty awesome. 

     

    Take care and hello to your Mom. 

     

     

     

  • supergirl20
    supergirl20 Member Posts: 8
    #9
    Thank you everyone sooo much

    Thank you everyone sooo much for kind words. I'm glad this forum exists to offer support to all of us

    struggling with this disease.

    Nana B, thank you. to answer your question about liver resection. The onco consulted her surgeon the one that did the bowel ressection she had her entire sig col removed,

    thankfuly no ostomy. The surgeon along with a hepatic surgeon said thaty now was not the time becasuse PET was NED so they had nothing to look at to remove.

    I saw her PET it showed nothing. I am going to keep at it though maybe she will be a candidate. She is at a good cancer treatment center but I may try Sloan .

    Its hard because my mom is very strong and stubborn!

  • supergirl20
    supergirl20 Member Posts: 8
    #10
    I have also read that CEA can

    I have also read that CEA can be elevated because of an inflammatory response in the body. My mom also has Pagets disease in her lower legs  tib/fib. I wont get into Pagets here, but it is a abnormal growth and break down of bone which is a type of inflammation. Just wondering if anyone else has had this along with colon or any other cancer.

    I wish everyone with this cancer the best stay strong and fight! I don't know how my mom does it works,chemo and has a beautiful flower and veggie garden.

    She is my hero....

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #11
    supergirl20 said:

    I have also read that CEA can

    I have also read that CEA can be elevated because of an inflammatory response in the body. My mom also has Pagets disease in her lower legs  tib/fib. I wont get into Pagets here, but it is a abnormal growth and break down of bone which is a type of inflammation. Just wondering if anyone else has had this along with colon or any other cancer.

    I wish everyone with this cancer the best stay strong and fight! I don't know how my mom does it works,chemo and has a beautiful flower and veggie garden.

    She is my hero....

    And I bet, you are her hero

    Not all mothers are so blessed with caring daughters. 

     

  • Easyflip
    Easyflip Member Posts: 588 Member
    #12
    You are a super girl!
    Your mom's so lucky to have you in her corner! I'm stage 4 too with a liver met the doctors are deciding what to do with. My CEA is 1.1 and doesn't really go up or down, it's a poor marker for me and only is part of a larger picture for others. It's very common for colon cancer to spread to the liver, more than 1/2, it's totally survivable and even curable. Keep us posted on what they decide for her, I'll send positive thoughts to you and your mom. The technology is improving every day, don't give up!
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #13
    we...

    When CEA jumps up this much, we redo CEA (and CA19-9) either quickly if we're most worried about a bad test, or in a few weeks to see if it's still climbing.  If it's climbing, time to focus on  extra measures, perhaps more chemo adjuncts, conventional or alternative.  We've had good results with nonconventional additives from obscured medical literature added to chemo.

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