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All about Xeloda

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Comments

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    Thanks Pat.  I will ask.

    How are you feeling?

    Hugs!
    Robin

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    feeling better every day.  Course I've been off X for a week now and have another week to go.  Worried about not taking it but sure do feel good.  :-)

  • mnmom3
    mnmom3 Member Posts: 11
    edited November 2012

    I am on my 7days off Xeloda, still on Tykerb, actually feel really good today trying to get some laundry done, my least favorite chore. Start Xeloda Friday 3rd cycle.... Maybe I am over the initial side effects, they caught me by surprise.



    Marsha



  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I don't take the tykerb, not yet anyway.  I started it in May and didn't start getting much for se until recently.  Fingers and feet are number this round.  But I have found that the se change from round to round so this too may pass.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    I just accidentally took my X twice. I normally take 1000mg 2ce a day. Soooo...I just swallowed 2000mg in the last hour or so. I couldn't get a hold of doc's office - lunch time - phone just rings and rings, which is WEIRD.

    Anyway - am I gonna be ok? I know a lot of you take much higher doses than I do normally...

    Thanks!

    LL

  • TXGigi
    TXGigi Member Posts: 39
    edited November 2012

    Liz,

    I am sure you will be fine.  I take 1,000 mils twice a day and if I did that I would not be concerned.  Just skip the second dose, of course you already knew that.

    Gigi

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I wouldn't worry about it. I take 2000mg 2 x's a day. You may want to call your onc to see if you should skip evening dose. I'm not sure, but I think the dosage is based on weight and also se. My onc believed in starting with highest dose and I didn't have terrible se, so I've stayed at this dose. There was one time during aug that the pealing got bad ( I was on vacation at the beach...sitting in sun, I think heat did it.) so I lowered the dose on my own. When I saw onc on next visit she said had I called, that's what they would have told me to do.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Thanks so much, TXGigi and Frapp!! Yup - I'm going to just skip the night dose. I knew the wise ladies of this board would know the answer!

    Last night I had one of those weird evenings where I just passed out in my chair at about 8 last night. I mean, I was OUT. DH woke me up at 10 to go to bed, and I fell right back to sleep as soon as my head hit the pillow. Slept all the way through til 6:30 a.m. I recall this happened to me one night during the first week of the first cycle too. Only it was a Wed. not a Tuesday. Funny...wonder if this will be my pattern...! It wasn't bad...I'm very rested today. And for me, well rested = less overall anxiety and crying jags out of nowhere. My sinuses needed a break!

  • TXGigi
    TXGigi Member Posts: 39
    edited November 2012

    Liz,

    How well I know about the crying jags.  Onc put me on Cymbalta about 2 weeks ago and I really see a difference.  I don't cry at the drop of a bucket and I seem to have interest in doing things.  Maybe it is mind over matter but I swear they are working.

    Gigi

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I found this drug to be easier than the ai's.

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    I agree Frapp.  I was on Femara for 2 and a half years and my joints were so bad....among other side effects.  I find X alot easier to handle....so far!  lol

  • Jill49
    Jill49 Member Posts: 25
    edited November 2012

    Liz,

    I take 2000mg in the morning and 1500mg in the evening.  Skipping a dose doesn't seem to be a problem. 

    Occasionally when my feet are bad, my onc has me either take an extra week off or skip a cycle altogether.  I've been on this drug for 2 years straight and am still (I think) stable.

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Wow Jill, thanks for posting. I'm so use to having to switch every 4 months that I've been waiting for the other shoe to drop. I hope I'm still with X in 2 years!!

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Thanks Jill49!!

    TXGigi - I've been on antidressants for years. When I don't take them, I become a weepy mess - even when I should be happy and long before I was ever dx'd with bc for the first time! I take Lexapro, and if I run out and don't get it refilled right away, wow - again - hot mess. I think I'm doing well - I rarely take the Ativan because when I need it to work, I want it to work, etc. 

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited November 2012

    LizLemon, I'm surprised that they don't give you Lupron shots to shut off your ovaries since you are hormonal positive. I asked if I could have an oomph right after my initial treatment to reduce my chances of reoccurrence and nobody wanted to do it. In retrospect, I wish I pushed harder for it.



    I read an article that said Lexapro lowers the effectiveness of Tamoxifen so I switched to Effexor. It was amazing for calming down my hot flashes.



    I don't know if they did a new biopsy, but mine went from Her2- to Her2+.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Spamgirl -

    I know...no one ever even SUGGESTED an ooph to me after my initial treatment! I'm really mad at myself now for not demanding it.

    We (me and DH) have asked onc twice about having ooph, and about the estrogen from my ovaries, and the onc said he didn't feel that was a problem wtih Tamoxifen and Xeloda on board. Said something about not wanting to slam me into menopause too -- though maybe this X will do it afterall at some point. I have to re-visit the whole ooph thing. I'm just starting to feel somewhat more normal - at first I was so incredibly overwhelmed it was like drinking from a fire hose. I think within the next month or so, I'll be ready to get a second opinion, etc. 

  • Swannay
    Swannay Member Posts: 50
    edited November 2012

    Wonderful news. Celebrate!



    Frapp, glad you are feeling better.

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Wow this has been a busy thread over the last couple of days.

    Robin - hope you get great results from your scans. I'm not on Zometa, but have heard as Frapp says that it's like having flu on  first dose but after that not too bad.

    Lynn - sounds like you need a reduction in your dose so hopefully onc will agree. I'm using the Udderly Smooth cream that has urea on hands. I think it's easier to get in US than here, but might be called something else there. I alternate with some beeswax stuff. I use a Boots cream on feet so you probably won't have the same one in US.

    Frapp - good to hear you're feeling better for the chemo break. Do you know when you'll be starting again?

    Liz - I think a one off double dose won't do any harm. Sounds like you're on quite a low dose anyway. I don't think it will make too much difference having the ooph if you're on chemo just now. May be worth doing if you switch to a hormonal on its own later. My onc believes in swapping the treatment to hormonals to allow a chemo break if you're ER+ and stable.

    I'm near end of week 2 of pills for this cycle and definitely feeling some benefit from the reduced dose but a bit worried that I've had a little progression during the extra time off chemo to let my blood counts come up. Hoping I'm not developing resistance yet.

  • FiveAlive
    FiveAlive Member Posts: 7
    edited November 2012

    I have'nt been posting in the Xeloda area here but have been following as much as I can.  Since Mrs. FiveAlive is winding down from her Xeloda effectiveness, I thought i would give a little summary of how it worked for her.  Actually she was on a Gemzar/Xeloda combo since early July of this year and it quickly brought down her enzyme levels and gave a boost to her white and red counts.  There were no major side effects other than the regular aches and pains in the muscles from time to time (flu-like) and of course the fatigue.  Her neuropathy unfortunately continued but this was from her previous carbo/taxol combo which she had been on for about a year.  Even 5 months into Xeloda it was still showing itself...so it could be part of the Xeloda side effects.  She was diligent in putting on her "Udder Cream" and it was only in the last few weeks she felt the real effects of the hand and foot syndrome...but it was still OK for her to get around.  She only had one liver scan during the time she was on it and it showed "mild regression"...which is better than stable or progression of course.  The average "time to progression" I read for Xeloda was about 4.5 months and that was about the same in her case. This latest scan confirmed it was no longer effective and it is time for a change.  So, now it's on to a trial of Halaven and more hoping.  Good luck to you all.

  • Frapp
    Frapp Member Posts: 343
    edited December 2012

    ((((five alive)))))) good luck on the new treatment. I hope it takes effect fast and gives you some stability for a while. My best to you,

    Pat

  • gail5
    gail5 Member Posts: 125
    edited December 2012

    FiveAlive - good luck with the new treatment. Hope it lasts longer.

  • RobinNY
    RobinNY Member Posts: 136
    edited December 2012

    Best of luck FiveAlive!

    RObin

  • FiveAlive
    FiveAlive Member Posts: 7
    edited December 2012

    Thanks Ladies. It's the age old "it is what is" and when it isn't any more....then it's time to move on to the next regimen.

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    Anyone else notice a pattern of days when you crash and sleep all day. I had one today. I just am so sleepy I have to just sleep. I finally got up at 2pm today and I. Slowly coming out of the fog. Always happens on my week off. Seems to happen about once a month.



    Regular monthly onc checkup tomorrow. Have to remember to ask what's crashing me?

  • Frapp
    Frapp Member Posts: 343
    edited December 2012

    I do have a day or two but I seem to notice those days during the beginning of second week. In the past I've been working so just had to bear with it for a couple days. Since I've been out from surgery, I noticed it was even worse. I'm guessing due to my body trying to heal at the same time. I took an extra week of x and just realized I should have started again lat Thursday. Ug, I can still feel the numbness in my fingers and toes after more than 2 weeks off. Guess I should get the pills out and start up again tonight. I'm having scans on 12/17 and want them looking good.

  • braids3
    braids3 Member Posts: 131
    edited December 2012

    yes i notice it more on my week off i thought it was the tykerb hope your healing well i get to take a week of the T when they sced the cyberknife hope every one is doing good love and blessing too all

  • gail5
    gail5 Member Posts: 125
    edited December 2012

    I find it harder to get up on the week off, but that might just be because I don't have the incentive of having to take pills at regular times.

  • donagee
    donagee Member Posts: 4
    edited December 2012

    Dear Xeloda users,   I have been on Xeloda since July 2012.    In addition to the hand/foot problem,  I also feel mild to moderate indigestion when I eat.   Does anyone else have this problem?   I worry so much about everything.  Any advice on how to lift the burden of worry?   I just find myself overwhelmed with worry sometime and need strategies to to deal?   Talking to a therapist hasn't helped.   Only all of you know what this really feels like.  I am just a big teary baby about all of this.    Help if you can.

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    Is it a slightly queasy feeling, like you think you will be sick but then aren't? Anyway, that's pretty frequent for me. I just had the weekend from hell with digestive upset and I'm pretty sure I've tied it to dairy. It's been building slowly with those queasy episodes so I'm going to experiment and stop eating cereal for breakfast and my favorite ice cream for a treat. Both have been giving me fits for weeks.



    I think maybe X contributes to a sensitive stomache, not sure.

  • Chickadee
    Chickadee Member Posts: 469
    edited December 2012

    Oh yes forgot. Just back from onc for monthly checking and blood test results. They look better than last month. Almost no red flags! Even the WBC is only .1 off normal. She finally did a CA15.3 tumor marker test just for a baseline. It's a 12.



    So all in all X is still doing good things for me. Next scans won't be until Feb but I think she might consider forgoing them if the blood tests remain optimal. Wouldn't that be nice. No dang machines whirring over my body.

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