I'm new; have questions

cjf2006
cjf2006 Member Posts: 83
edited March 2014 in Colorectal Cancer #1
What does NED stand for? I read a post where someone was concerned about a CEA of 23. I'd rejoice if mine was that. I've been as high as 670 and as low as 10 and all kinds of numbers in between. Is there something I'm not being told? Lastly, I was diagnosed (is that what dx means) Oct 12, 2006. Have stage 4 colon cancer spread to liver and lungs. Had right side of colon removed, but was told liver is inoperable. I 've had two different chemo regimens and am on a break, but am not feeling so well. Question..is it normal to get breaks even though the cancer is still there? How many times does one go through chemo to get the cancer to stop growing? That'll do for now. I have so many questions.

Comments

  • fedester
    fedester Member Posts: 753 Member
    #2
    hello,
    welcome to our family.
    sorry you are here. ned stands for no evidence of disease. i am a stage 11 survivor, i had 6 months chemo. there are alot of people here that can answer your questions, just ask away. there are many stage 4 survivors here.
    be well
    never,ever give up
    bruce
  • cheryltaco
    cheryltaco Member Posts: 39
    #3
    Hello. Welcome. NED stands for no evidence of disease, and yes, DX stands for diagnosed. It is common to get breaks from the chemo. As for how long someone remains on chemo depends on a number of factors (type of cancer, staging, overall health, age etc.) but on average 6-12 cycles seems to be pretty common. I'm sorry you're not feeling well, I can relate as I too am on chemo and am struggling! You have some great questions, I would take them to your oncologist so that he can give you accurate info based on your current status. Blessings, Cheryl
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #4
    Hello and welcome, sorry it's under these circumstances. As Bruce said NED no evidence of disease. You might want to search personal webpages and previous posts by doing a search on liver mets, lung mets etc. My hubby is stage IV survivor and currently NED after colon and liver resection after 9 chemo treatments. Be sure to explore all options and ask questions and don't be afraid to get second/third opinions if necessary. What chemo regimen were you on and have you explored resection and or rfa for liver/lung mets? Good luck and God Bless. Keep us posted.
    Diane
  • cjf2006
    cjf2006 Member Posts: 83
    #5
    hopefulone said:

    Hello and welcome, sorry it's under these circumstances. As Bruce said NED no evidence of disease. You might want to search personal webpages and previous posts by doing a search on liver mets, lung mets etc. My hubby is stage IV survivor and currently NED after colon and liver resection after 9 chemo treatments. Be sure to explore all options and ask questions and don't be afraid to get second/third opinions if necessary. What chemo regimen were you on and have you explored resection and or rfa for liver/lung mets? Good luck and God Bless. Keep us posted.
    Diane

    Starting back in Nov 2006, I had 8 out of 12 recommended folfox treatments with Avastin. My oncologist (a she) stopped the oxaliplatin because of the neuropathy. That ended in March. Then I had to quit chemo for a month to get rid of an intestinal infection. I was then given just 5FU/leucovarin/Avastin ( she called it a maintenance regimen)for alost 2 months. I had a brief break for a family vacation, but started to feel symptoms returning. Went back in, found out the CEA had climbed to over 300 and started irinotecan/5FU/leucovarin/Avastin. Had 6 treatments over four months. Then given a break",with a CEA at 118, though the CTscan in Nov showed no growth. (The cancer had shrunk under folfox, then grew back, but I never was told how much it grew back in comparison to how much it had shrunk). I have tumors in both lobes of the liver, so I guess surgery is out. The lung tumors were small but scattered throughout both lungs. Can a person keep taking chemo on and off or is there a point at which it is ended?
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #6
    Hi! I'm glad you found the forums. I answered your CEA question above. In response to your other questions, hmm. lets see...
    It is normal to get breaks from chemo because otherwise your liver, immune system, etc. would not be able to take it. It is important for your body to recuperate. I don't think you can just keep doing FOLFIRI (your regime) without taking periodic breaks.
    As far as I know a person can keep on taking chemo off and on. I know a woman who has been on it off and on for 9 years now and is living a full life. There are other options too that you can ask your doctors about. I guess the goal would be to kill all of your tumors with your chemo and get you to the point that you're NED and/or a candidate for surgery. If that does not happen (chemo works for some better than others) then the goal would be to keep your tumors stable. Other ways to get rid of them in the liver would include Sir spheres, or RFA. I think RFA can also be done on any lung tumors that don't get killed off by the chemo. I would write down all of your questions as they pop into your head and next time you go to the doctor you can ask them and you won't forget anything. Also, feel free to ask all your questions here too so you will have more info.
    Take care, I hope that helped,
    Susan H.

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