Has any one had good response with folfox and then not the second time around?

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krystiesq
krystiesq Member Posts: 240 Member
edited March 2014 in Colorectal Cancer #1
My mom was dx in Nov 07 stage IV colon cancer. She had 12 rounds of folfox, her CEA got down to 8.9. She was switched to fFU w avastin, after four months her CEA started to rise. She was switched to irrinotecan her CEA went down and then started to rise. She had a scan and now she's back on folfox due to changes in liver lesions on last scan and the rise in CEA. She had her CEA tested in october and repeated after two treatments of folfox and her CEA has risen about a hundred points. Have any of you experienced anything like this? Her options are running out. She has the kras mutation and her oncologist said the only other option is a clinical trial that has an astronomical waiting list. I am just devastated by this news and afraid it will put my mom into a horrible depression.

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  • dorookie
    dorookie Member Posts: 1,731 Member
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    I am so sorry
    I just hate to hear this news. I was just thinking of you the other day, but couldnt remember your name so I could PM you and find out how your mom was doing. If I remember correctly you were expecting a baby too, how are you? Did you have the baby?

    I am so sorry your mom is not doing well, I dont have any real experience with what you are asking, I just wanted to say hi and let you know that you were thought of and missed and that I will say a special prayer for your mom.

    *HUGS*
    Beth
  • krystiesq
    krystiesq Member Posts: 240 Member
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    dorookie said:

    I am so sorry
    I just hate to hear this news. I was just thinking of you the other day, but couldnt remember your name so I could PM you and find out how your mom was doing. If I remember correctly you were expecting a baby too, how are you? Did you have the baby?

    I am so sorry your mom is not doing well, I dont have any real experience with what you are asking, I just wanted to say hi and let you know that you were thought of and missed and that I will say a special prayer for your mom.

    *HUGS*
    Beth

    Thanks Beth!
    I missed you guys too and forgot what good support it was to be on here. It just gives me anxiety when I read people's stories on here sometimes so I have been just lurking and not posting as much. I did have a beautiful baby girl, thank you for remembering! Her name is Georgia and she looks just like her daddy, but she has my blue eyes (the only thing she got from me). She is such an easy baby, never cries, only wakes up usually once a night to nurse and just has the most laid back happy demeanor. She is a great distraction.

    I am having a really hard time with this news, especially since my mom is so hopeful and would do anything to just be well. Cancer really just sucks. Her oncologist sounded really hopeful yesterday because my mom's labs were excellent. She said she expected her CEA to go down and for me to call and get the results yesterday afternoon. Well, I got them just prior to posting this and it was all I could do to not freak out at my desk here at work. So that is why I'm hoping someone chimes in and has a similar story and maybe we just need to give it a few more rounds. I hope you are well! Update me on your life, aside from your recent awesome 'cancer free' news. That has to feel good, I am very happy for you.
  • dorookie
    dorookie Member Posts: 1,731 Member
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    krystiesq said:

    Thanks Beth!
    I missed you guys too and forgot what good support it was to be on here. It just gives me anxiety when I read people's stories on here sometimes so I have been just lurking and not posting as much. I did have a beautiful baby girl, thank you for remembering! Her name is Georgia and she looks just like her daddy, but she has my blue eyes (the only thing she got from me). She is such an easy baby, never cries, only wakes up usually once a night to nurse and just has the most laid back happy demeanor. She is a great distraction.

    I am having a really hard time with this news, especially since my mom is so hopeful and would do anything to just be well. Cancer really just sucks. Her oncologist sounded really hopeful yesterday because my mom's labs were excellent. She said she expected her CEA to go down and for me to call and get the results yesterday afternoon. Well, I got them just prior to posting this and it was all I could do to not freak out at my desk here at work. So that is why I'm hoping someone chimes in and has a similar story and maybe we just need to give it a few more rounds. I hope you are well! Update me on your life, aside from your recent awesome 'cancer free' news. That has to feel good, I am very happy for you.

    You were missed
    But I can relate, there have been times where I needed to take a break from the board as well, I was finding myself being more and more upset that so many of these great people having to go through such hard times, it really does just break my heart. I know the hell they are going through, went through it myself, so I can relate to them, CANCER JUST SUCKS BIG TIME....I just wish I could wave a magic wand and cure everyone.

    I am so sorry your mom is having such a hard time, but the lab results are good right? So that is something to focus on. I am not a doc but I would have to say give it a few more rounds before you start to freak, I think it is probably a bit early, and God is trying to tell you to just be calm, enjoy each day, and things will work out. Thats just my thoughts.

    I am currently NED, Thank GOD, I am also currently moving to San Antonio TX, sitting in a hotel in FT. Stockton as I type this, got about another 5 hours of driving to get to our new home, moving is very hard and stressful. Started the move on Monday(Nov 30th) and have to start a new job on Monday (Dec 7th), I am just exhausted. Not a new job just a transfer within the same agency.

    I became a grandma for the first time, John Hunter was born Oct 21, 2009, there is a pic on my expression page. What a blessing he is.

    I am so happy for you and what a beautiful name you picked out. I am sure she has more than just your eyes, I am sure she has your heart! Congratulations and please enjoy that little angel, what a blessing.

    Gosh here I am taking up so much room just rambling. Its so great to hear from you again, please give your mom my love and let her know I will be praying for her, and for you and your new family as well.

    God Bless
    Beth
  • Shayenne
    Shayenne Member Posts: 2,342
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    dorookie said:

    You were missed
    But I can relate, there have been times where I needed to take a break from the board as well, I was finding myself being more and more upset that so many of these great people having to go through such hard times, it really does just break my heart. I know the hell they are going through, went through it myself, so I can relate to them, CANCER JUST SUCKS BIG TIME....I just wish I could wave a magic wand and cure everyone.

    I am so sorry your mom is having such a hard time, but the lab results are good right? So that is something to focus on. I am not a doc but I would have to say give it a few more rounds before you start to freak, I think it is probably a bit early, and God is trying to tell you to just be calm, enjoy each day, and things will work out. Thats just my thoughts.

    I am currently NED, Thank GOD, I am also currently moving to San Antonio TX, sitting in a hotel in FT. Stockton as I type this, got about another 5 hours of driving to get to our new home, moving is very hard and stressful. Started the move on Monday(Nov 30th) and have to start a new job on Monday (Dec 7th), I am just exhausted. Not a new job just a transfer within the same agency.

    I became a grandma for the first time, John Hunter was born Oct 21, 2009, there is a pic on my expression page. What a blessing he is.

    I am so happy for you and what a beautiful name you picked out. I am sure she has more than just your eyes, I am sure she has your heart! Congratulations and please enjoy that little angel, what a blessing.

    Gosh here I am taking up so much room just rambling. Its so great to hear from you again, please give your mom my love and let her know I will be praying for her, and for you and your new family as well.

    God Bless
    Beth

    Krystie!!!!
    I also forgot how to spell your nick, because I been thinking about you as well and wondering what's been happening with your mom. She has the same doctor as me, and she doesn't seem to worry about the CEA levels much, though I may be going for a second opinion when I get my tax refund check. I think I've decided to go to #1, MD Anderson and want to see Dr. Curley about my mets.

    I heard CEA levels will go up and down at times, till it's stablized, she doesn't seem to worry about mine, and wants to put me on maintenance therapy for now. I have never tried Folfox, I've only been on this Folfiri, where she will be taking the Irinotecan away, and leaving me on Avastin and 5fu, she wants my body to build back and regenerate abit, and look at possible options down the road, but I don't want to wait too long. I'd like to know if these other options can happen now.

    I'm so glad to see you, and congrats to you baby girl, she sounds like a really good sweet baby, she will bring you cheer, enjoy her ;)

    I hope your mom gets better, and don't lose the hope, it may stabilize at some point hopefully, but I didn't think they put so much emphasis on the CEA, heck I think mine is like 60, and I was like over 1400 when I was first dx'd. They have gone down alot, and hopefully still will!

    Good to see you here!!!
    Hugsss!
    ~Donna
  • krystiesq
    krystiesq Member Posts: 240 Member
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    Shayenne said:

    Krystie!!!!
    I also forgot how to spell your nick, because I been thinking about you as well and wondering what's been happening with your mom. She has the same doctor as me, and she doesn't seem to worry about the CEA levels much, though I may be going for a second opinion when I get my tax refund check. I think I've decided to go to #1, MD Anderson and want to see Dr. Curley about my mets.

    I heard CEA levels will go up and down at times, till it's stablized, she doesn't seem to worry about mine, and wants to put me on maintenance therapy for now. I have never tried Folfox, I've only been on this Folfiri, where she will be taking the Irinotecan away, and leaving me on Avastin and 5fu, she wants my body to build back and regenerate abit, and look at possible options down the road, but I don't want to wait too long. I'd like to know if these other options can happen now.

    I'm so glad to see you, and congrats to you baby girl, she sounds like a really good sweet baby, she will bring you cheer, enjoy her ;)

    I hope your mom gets better, and don't lose the hope, it may stabilize at some point hopefully, but I didn't think they put so much emphasis on the CEA, heck I think mine is like 60, and I was like over 1400 when I was first dx'd. They have gone down alot, and hopefully still will!

    Good to see you here!!!
    Hugsss!
    ~Donna

    CEA
    I've heard that your CEA can come back raised if you have inflammation or infection present. Well, my mom is battling a mean sinus infection and has respiratory inflammation presently. She has had it for a few weeks. I put in a call to Dr. K to discuss this with her, so hopefully she will call me this afternoon. My mom's cea was well over 1000 when this all started, and it went up 100 from oct to present, she is somewhere in the 500 range. I just don't want her to lose hope.