Skipping rads, going right to chemo (Xeloda)

pinkkari09
pinkkari09 Member Posts: 877 Member
in Breast Cancer #1
Hello my dear warriors :) I’m piping in to give you an update on my treatments and of course letting everyone know that I’m ok. As I’ve posted, my cancer came back on my spine after 6 short months with NED. Subsequent to long visits with my oncologist I decided to opt out of radiation and jump into chemo, here’s why: My cancer is triple negative, and in my mind, moving fast, growing fast, and all the other horror stories I’ve read about triple negative. So, I thought it would be best for me to jump into chemo because it covers a larger area than radiation. The radiation would definitely help with the pain, but it would target the two tumors, and I fear that while it’s doing that, I may have cancer growing elsewhere. Thank God, I have a high pain tolerance so I can manage the pain while the chemo can get to work on everything from my neck down. I wanted to let you all know I’m starting Xeloda on Monday. Of course this is a pill form of chemo and it has to be picked up at the pharmacy: Retail Cost $5702.00/month, my insurance covers $3100.00, my co-pay assistance card covers up to 80% of the remainder, YIKES!! Basically it’s a five thousand dollar laxative LOL :-) Two of the most common side effects are D and Hand and Foot Syndrome. If anyone has any helpful hints for Xeloda, D, or Hand and Foot Syndrome please pass them along; I want to gather all the information I can before I start it on Monday.
Miles of Love,
~Kari
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Comments

  • natly15
    natly15 Member Posts: 1,941
    #2
    Kari YIKES this damn cancer
    Kari YIKES this damn cancer is an expensive proposition. I have no info for you but have you in my heart and prayers. Best wishes on Monday.
  • New Flower
    New Flower Member Posts: 4,294
    #3
    Hi Kari
    Thank you for your update. I am sending positive thoughts and wish you minimal side effects from this drug. I remember several people have had similar treatment and I am sure will answer your questions.

    Also I know one lady who did both radiation and Chemo simultaneously for short period of time (3 weeks). Maybe you run and want to check it out by your oncologist.
    I am praying that this new Chemo pill will work for you and you meet NED in near future.
    Hugs,
    New Flower
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #4
    God bless you my friend as
    God bless you my friend as you start this new leg of your journey. You've been and will continue to be in my thoughts and prayers Kari :)
    I had the hand & foot syndrome with my taxotere treatments. The day after the infusion, the palms of my hands got really red. Then it started hurting, starting like a sunburn feeling and in a short period of time it got extremely painful - to where i could barely do anything with my hands. The skin on my palms got drier & drier, then started cracking and eventually peeling. I got it on my feet also, but not nearly as bad. They (my heels) mainly got really red & peeled. My mom got it bad on hands and feet, there were a few days where she could barely walk.
    My oncologist gave me steroids (i think prednisone) and it did help. With my second infusion I started taking the steroids as soon as the side effects started and it seems that taking them right away stopped them from getting too bad.
    I did slather Aquaphor on my hands & feet all the time to help with the dryness -it really hurt when the skin would crack.
    Best of luck to you kari :)
    *hugs & hugs & hugs*
    Heather
  • fauxma
    fauxma Member Posts: 3,577 Member
    #5
    Heatherbelle said:

    God bless you my friend as
    God bless you my friend as you start this new leg of your journey. You've been and will continue to be in my thoughts and prayers Kari :)
    I had the hand & foot syndrome with my taxotere treatments. The day after the infusion, the palms of my hands got really red. Then it started hurting, starting like a sunburn feeling and in a short period of time it got extremely painful - to where i could barely do anything with my hands. The skin on my palms got drier & drier, then started cracking and eventually peeling. I got it on my feet also, but not nearly as bad. They (my heels) mainly got really red & peeled. My mom got it bad on hands and feet, there were a few days where she could barely walk.
    My oncologist gave me steroids (i think prednisone) and it did help. With my second infusion I started taking the steroids as soon as the side effects started and it seems that taking them right away stopped them from getting too bad.
    I did slather Aquaphor on my hands & feet all the time to help with the dryness -it really hurt when the skin would crack.
    Best of luck to you kari :)
    *hugs & hugs & hugs*
    Heather

    Kari,
    You are really an
    Kari,
    You are really an amazing lady. You have looked at the picture and have had a decision that sounds right on target. I will keep you in my prayers that the chemo does the job and that the issue of rads can be addressed later. Keep us informed and know that everyone of us is solidly in your corner.
    Stef
  • carkris
    carkris Member Posts: 4,553 Member
    #6
    fauxma said:

    Kari,
    You are really an
    Kari,
    You are really an amazing lady. You have looked at the picture and have had a decision that sounds right on target. I will keep you in my prayers that the chemo does the job and that the issue of rads can be addressed later. Keep us informed and know that everyone of us is solidly in your corner.
    Stef

    really here for you Kari, thanks for the update and praying that the chemo works and that you have minimal to no sideeffects. I think you are making wise choices!
  • Aortus
    Aortus Member Posts: 967
    #7
    Huh huh huh huh, she said laxative
    Kari, I will definitely keep you in my thoughts and prayers, but there is precious little worrying I can do about someone with the guts to joke about Xeloda as an expensive laxative. I keep thinking back on all the crap you have had to put up with in addition to this TNBC crap, and how you have always come through on top, laughing and cracking jokes. You're gonna wind this round too.

    God Bless,
    Joe the Tiguan Jockey
  • sausageroll
    sausageroll Member Posts: 415
    #8
    Aortus said:

    Huh huh huh huh, she said laxative
    Kari, I will definitely keep you in my thoughts and prayers, but there is precious little worrying I can do about someone with the guts to joke about Xeloda as an expensive laxative. I keep thinking back on all the crap you have had to put up with in addition to this TNBC crap, and how you have always come through on top, laughing and cracking jokes. You're gonna wind this round too.

    God Bless,
    Joe the Tiguan Jockey

    Kari
    Tiguan Jockey...have a good trip and take your foot off the peddle now and then!!!

    Kari..you seem to have really made a very intelligent decision. What more can you do? i hope the pain is bearable and you don't have too many horrible side effects.

    Can't offer much help. I did have hand and foot..skin peeled off every couple of weeks and lost my nails. I also used Aquaphor a lot. The big D is the "bummer"....sorry!!! I should have taken stocks out in Depends. You'll get through this...smiling and laughing as you always do. Thinking of you. Take care. Pat
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #9
    You are amazing!
    It sounds like you have taken this beast under your control once again. I hope the Xeloda does the trick on the tumors and then the rads finishes it all off. I'll be sending positive vibes and plenty of (((hugs))) your way. Unfortunately, I don't have any personal experience with this course of treatment. Your take charge attitude along with your humor will get you far. We'll all be right there with you. Good luck and sending love to a special pink sister.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
    Kari@
    wow...so stil must pay out of pocket...If i read correctly?


    sorry you have to go through this...I hope your days are tolerable! I have never done chemo but MY heart is with you...
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #11
    disneyfan2008 said:

    Kari@
    wow...so stil must pay out of pocket...If i read correctly?


    sorry you have to go through this...I hope your days are tolerable! I have never done chemo but MY heart is with you...

    No experience, but I can send positive thoughts
    Kari-
    Your decision to do chemo first makes sense to me, too. I wish you success and NO side effects. Just because you can have them, doesn't mean you will. Right? I assume it's possible the chemo will also shrink the tumors that are causing you pain.

    Sending prayers, hugs, and positive thoughts now and throughout your treatment and recovery.

    Suzanne
  • mimivac
    mimivac Member Posts: 2,143 Member
    #12
    Good luck, Kari
    I know this is a journey you would not choose, but I think you are making the best decision for you. My thoughts are with you as you start chemo.

    Mimi
  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #13
    mimivac said:

    Good luck, Kari
    I know this is a journey you would not choose, but I think you are making the best decision for you. My thoughts are with you as you start chemo.

    Mimi

    Good Luck - stay strong!
    While I am new to these boards and don't know you very well, I can see the admiration, love and respect these women have for you. I hope that you will be okay and that this latest of your ordeals goes smoother than you anticipate. Good Luck and stay strong.

    Clementine
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #14
    Kari... you are in my
    Kari... you are in my thoughts and prayers. Hugs and I hope the new drug doesn't have too many side effects for you. Keeping going, we are here for you.
    BL
  • MAJW
    MAJW Member Posts: 2,510 Member
    #15
    Wishing
    You the very best as you start chemo....I, too, am triple negative...I HATE this stinking disease!!!! I agree with your decision to start with the "big gun, chemo!". Not much more I can add, except to let you know we're all "with you"....
    Wishing you love, strength, courage and prayers...what ever you need most...
    Nancy
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #16
    Very Best Wishes for Monday's start...
    Kudos to you, Kari, for making a tough decision that's right for you. Can't offer specific help nor advice...

    Do want you to know that I'm rooting for you, cheering you on. Hoping you'll do very well with chemo.

    Kind regards, Susan
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #17
    It sounds like you've made a
    It sounds like you've made a thoughtful, logical decision. I think I would put up with the pain and go for the chemo first too.

    I had mild foot and hand. At the first sign of red on my hands, I started with Aquafor...slathered it all over my hands and feet at night and put cotton gloves/socks over that. It took me a while to find the gloves, finally got them at Ulta.

    Best of luck with your treatments, let us know how you're doing.

    Hugs,

    Linda
  • missrenee
    missrenee Member Posts: 2,136 Member
    #18
    Gabe N Abby Mom said:

    It sounds like you've made a
    It sounds like you've made a thoughtful, logical decision. I think I would put up with the pain and go for the chemo first too.

    I had mild foot and hand. At the first sign of red on my hands, I started with Aquafor...slathered it all over my hands and feet at night and put cotton gloves/socks over that. It took me a while to find the gloves, finally got them at Ulta.

    Best of luck with your treatments, let us know how you're doing.

    Hugs,

    Linda

    Kari--don't forget--not everyone gets the side effects
    I took TAC for 6 rounds and my side effects were very minimal compared to most. You sound like a pretty tough cookie to me--and a real fighter. Take it one day at a time and don't anticipate. Start thinking--"This is going to be okay, I'm going to do just fine. I CAN do this and all will be well."

    I'm going to start saying it with you--come on, girls--let's say it for Kari.

    Hugs, Renee
  • ElizabethB
    ElizabethB Member Posts: 89
    #19
    Your in my prayers
    I wish I could pass you some info but I am new at this myself. I pray for you recovery to be quick and a positive note.
  • ElizabethB
    ElizabethB Member Posts: 89
    #20
    MAJW said:

    Wishing
    You the very best as you start chemo....I, too, am triple negative...I HATE this stinking disease!!!! I agree with your decision to start with the "big gun, chemo!". Not much more I can add, except to let you know we're all "with you"....
    Wishing you love, strength, courage and prayers...what ever you need most...
    Nancy

    triple negative
    does that mean you have 3 bad receptors?????? I am so confused I guess I need to ask my Doctors about things I feel like a mushroom kept in the dark. I don't even know what level I had my cancer at....I am so confused
  • jnl
    jnl Member Posts: 3,869 Member
    #21
    carkris said:

    really here for you Kari, thanks for the update and praying that the chemo works and that you have minimal to no sideeffects. I think you are making wise choices!

    Praying this chemo will work
    Praying this chemo will work for you Kari! So sorry about the expense of it.


    Hugs, Leeza

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