No more NED for me!

apache4
apache4 Member Posts: 272 Member
edited March 2014 in Colorectal Cancer #1
Hi all,
Not to be bummed out or anything, but I just spoke with my onc. and "it's back!". He explained how a PET scan can't pick up very small cancers and my numbers went up so we did a CT scan last Fri. and it showed new tumors in the liver. At least there are none anywhere else. He wants me to start a new chemo ASAP, but I have to wait until the 18th as I am going to Florida tomorrow to buy a house. My son got a promotion and he and family will be gone there the first of the year. That makes me here by myself except for friends. So, hopefully I can do two months, show some improvement with another scan and then move. It will be to Tampa where the Moffitt Cancer Center is. My CEA count went from 6 to 24 and the liver function tests went up also. I will be starting Irrnotecan (sp?) or CPT-11...anyone have recent experience with it?
I routinely think and pray for all of you. I guess we need to add me to the lists again. I must admit to being a bit upset. Love to all, Linda

Comments

  • Limey
    Limey Member Posts: 446 Member
    #2
    Man this cancer sucks. sorry to hear the news but is sounds like you have the right attitude. the liver is often a good candidate for RFA (radio frequency ablation) - painless and un invasive = I would ask about it.
    best of luck
    Mark
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #3
    Linda, I'm so sorry that you got this news. As you probably know, we are also disappointed in results of my husbands last ct. Tomorrow is the MRI and hopefully it will tell us some better news. I know how upset you must feel but keep the faith and your determined attitude. I believe you'll beat it back into remission again. No experience with the chemo regimen proposed, but I know some here have been on it, so I'm sure they will post. Congratulations on the house purchase. Keeping you in my thoughts and prayers.

    God Bless,
    Diane
  • apache4
    apache4 Member Posts: 272 Member
    #4
    Limey said:

    Man this cancer sucks. sorry to hear the news but is sounds like you have the right attitude. the liver is often a good candidate for RFA (radio frequency ablation) - painless and un invasive = I would ask about it.
    best of luck
    Mark

    Thanks for the thoughts about RFA...I have asked about this before and I really have too many tumors to be able to take advantage of it. My entire liver is freckled with scar tissue from the old tumors and now the new ones.
  • jams67
    jams67 Member Posts: 925 Member
    #5
    So sorry to hear your news! Your attitude has been a big help to all of us. You inspire me to go to the gym, and I know you will keep on kicking your cancer down and out.
    Jo Ann
  • offutt9
    offutt9 Member Posts: 88 Member
    #6
    Hello!!! I am sorry to hear that your cancer is back. I will keep you in my prayers... Visit Chemocare.com and it tells all about the CPT 11 or Irnotecan. I check out my chemo meds on there. I know its upsetting, but keep up the faith!!!! In Gods Love... Barbara
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #7
    Sorry to hear your news. You seem to have a great attitude. Hopefully your move will keep you busy enough to keep your mind on other things. You will be in my prayers, keep the faith!!

    Faith
  • kmygil
    kmygil Member Posts: 876 Member
    #8
    Hi Linda,
    I'm so sorry about your news. You have a can-do attitude, so I know you will wrestle this beast back into submission. Congratulations on the new house. You are an inspiration to us all!
    Hugs,
    Kirsten
  • betina61
    betina61 Member Posts: 642 Member
    #9
    Linda I am sorry to hear that the cancer is back,but with your spirit and all our prayers you will win again this second battle,I live in Miami and maybe sometime in the near future I could go to Tampa to meet you,Florida is a beautiful place to live,you are going to like it. Lots of hugs to you,and know that you will be in my prayers.
  • jerseysue
    jerseysue Member Posts: 624 Member
    #10
    Sorry to hear that it's back keep up the great attitude and kick it's butt one more time. Lots of luck and I'll keep you in my prayers.
  • libris
    libris Member Posts: 23
    #11
    So sorry to hear about your bad news (I know what your're going through, as I've just had some myself).

    I spent the summer of '06 on irenotecan. The major side effect is usually diarrhea. I had an ileostomy at the time so I was spared that. I did lose all my hair, but I didn't mind the bald look. The only part that bothered me was a low level nausea that built each week until by the end of treatment it was pretty constant.

    I tried compazine, zofran, chinese herbs, acupuncture - nothing was effective. I hope you'll do better. Many people find nausea relief that works for them.

    Best of luck.
  • KFalvey
    KFalvey Member Posts: 118 Member
    #12
    Hi Linda,
    First, sorry about the bad news, it's never easy to take. Second, WELCOME to the Tampa area soon, I'm in St. Petersburg and have been going to Moffitt for a couple years now, although I do get my chemo locally. I did Irinotecan with Avastin and 5FU Leucovorin last year. The CPT-11 did not make me lose all my hair, but it did thin; it did make my stomach girgle and churn excessively while getting infused, although I did not get nauseated until the 12th dose. I did have to get Neupogen shots(3) between doses to keep my white cells up. I didn't get diarrhea like most, just the opposite. I was able to keep doing most my activities as usual other than the fatigue that we get from all the chemos. Good Luck and if you'd like to keep in touch, e-mail me and we can exchange numbers.
    Kandy
  • alta29
    alta29 Member Posts: 435 Member
    #13
    NED doesnt like staying around for 2 long some times, right > I am on CPT11 with erbitux,,,I do get kind of sick but emend works good enough. My ct is today ( wed) to see if is working...I will get the results on friday..will let u know....God bless
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #14
    Linda: I'm sorry to hear the news, but now you know that it can be done. Your attitude goes a long way in getting you there. As for Irinotecan, my biggest complain is nausea, but the meds take care of most of that(as well as cold water and cold lemon gatorade). Faith and patience Linda, are two words I live by. I hope it helps you too. Monica

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