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All about Xeloda

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Comments

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    hands and feet peeling but not as bad as before...thank goodness for the uddery smooth!!

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    That's great, Blondie! I've read through your posts, and it looks like you've had a rough time! I hope the new schedule is good to you.

  • petjunkie
    petjunkie Member Posts: 39
    edited January 2012

    I've been on Xeloda for 10 months now. I started with the 14/7 schedule, but was moved to 7/7 after the HFS got bad. For the last month or two, the fatigue has been overwhelming. I am single, no kids, not working. . . you'd think I have it pretty easy! But I have been sleeping 12 hours a night, napping during the day, and still nodding off when I watch TV or read a book. 

    So my doc just lowered my dose a little, I'm now on 2500mg/day. It seems a bit low to me, but I do feel better already. Though I still feel like I need a constant stream of caffeine just to function.

    Anyone else dealing with exhaustion?  

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    Me too petjunkie it was bad and 7/7 is much better...the fatique is the worse and my QOL is what is important for me. I am still on 4,000 a day, 4 pills @ 500 twice a days...good luck Pet...

    Sandy

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Me too, I cant seem to stay awake this cycle... Im sleeping more than 12 hours and still cant stay up... my big thing today was driving to the corner store to get some milk (10 minute walk) & it was nice out!! Straight back to the lazyboy for a nap :P hope its just a se for this cycle!

  • apple
    apple Member Posts: 1,466
    edited January 2012

    it's official.. I'm am leaving Xeloda. my progression is noticeable yet small. - no big deal (ha ha)

    13 cycles surely did a number on my hands and feet.  Except for one week, my hands never really cracked or peeled. but the skin has turned rather thick and tough and even 8 days out from my last pill, still needs a ton of moisterizer.  No loss of hand function really.. they are pretty 'tight' tho.  i had to give up my walking some of the time.  if I walked too much my feet really hurt

    I;m ready to quit.. the period of efficacy refers to maximum benefit without side effect impact.  My body is tired, tired, tired of this drug.

    apparently Xeloda affects one's vocabulary too.

    See you around and best of luck.. on to Halaven  soon.

  • alesta29
    alesta29 Member Posts: 240
    edited January 2012

    Aw Apple. Sorry to hear you got the P- here's hoping the next one turns it around.

    You are such a fab support to folk here on the boards and I just wanted to say 'Thanks' to you and to your great sense of humour!

    Laurie x 

  • apple
    apple Member Posts: 1,466
    edited January 2012

    it's to be expected.. the 'P'  - I don't think it is particularly bad.. I'll discuss with my onc. on the 23rd.

    .

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    Good luck for the next treatment, Apple. Hope you have great results and minimal SEs for a long, long time and that your hands are silky smooth soon. Remember: once a Diva, always a Diva, right?! xx

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Apple Im really sorry to hear about the progression, even if you say its minor... pretty tough words to swallow. I dont want to come across as flippant because thats not the way I feel. Just want the best for you and if its Halaven then go for it.

    Im really hoping & praying the new treatment will be much better for your hands, your instrument that gives you & others such joy. As Angelfalls said wishing you beautiful silky smooth hands!

    Sending you a gentle hug along with one of my lucky ladybugs (long story) Suz.

  • dreamwriter
    dreamwriter Member Posts: 678
    edited January 2012

    Apple - so sorry about the progression.  Hope your hands heal quickly.  May the next treatment be good to you both in SEs and stability.  I'll share the Stable Boy with you.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    So sorry apple!!!

  • apple
    apple Member Posts: 1,466
    edited January 2012

    don't be sorry.. i am a good stage 4 patient so far.

  • luannh
    luannh Member Posts: 350
    edited January 2012

    Apple, sucks to have a progression but leaving icky s/e behind always feels good!  I am going to be moving to some chemo this week either this or taxol weekly I suppose and the only thing I can think of is I can't wait to feel a little estrogen flow thru my body again!

    I did notice alot of people mentioning fatigue and losing QOL with all the sleeping.  I have that problem now, my onc thinks it is just from all these meds for so long wears you down.  Anyway, he resisted at first but I got him to write me an rx for ritilan to help me stay awake.  He said he didn't like to give that because of the issue some peole have with heart palpitations and he didn't want to cause anymore problems with my health.  When I made him understand how bad the fatiuge was and that I couldn't handle it anymore he gave in and wrote the rx.  It was the best thing in the world for me!  I would take either 1 or 2 pills a day at first.  It seems as I built my body back up my energy started returning on its own.  I don't even take them everyday anymore.  It is nice to know though that I have a little pick me up if I need it or I am going to some all day function that I want to be at and enjoy.

    I think there is something else besides ritilan that does the same thing but I can't remember the name for the life of me now but I would suggest trying it.  The worst that can happen is you don't like it or it doesn't work and the up side, if it works you get some valuable QOL back!

    LuAnn

  • singletona80
    singletona80 Member Posts: 44
    edited January 2012

    I'm starting to get antsy.... Tomorrow is chemo day. Go in for taxotere and start X tomorrow

  • sueopp
    sueopp Member Posts: 238
    edited January 2012

    Nuts, Apple.  Glad the P seems minimal, and glad that there are other good drugs for you to switch to.  Sorry to lose you on the X thread though, you keep me upbeat and happy.  I'll watch for you on the Boards - SUE 

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2012

    Apple stay in touch and enjoy the freedom from the last music position.

    y'all my DH is not doing too well. I got kinda upbeat when the Rad Onc gave a more positive outlook than the Med Onc had given us. But he seems worse. I think he can see the forest while I'm looking at trees. What can i do but trust this great doctor?

  • deenah
    deenah Member Posts: 38
    edited January 2012

    Hello ladies! I am reluctantly joining you in xeloda land. I started this morning. My dose is 4000mg per day, 7/7. I have been queezy all day and took a zofran about 1/2 hour ago. I'm off to tame my evening dose now. I am also on tykerb/herceptin.



    My questions: does it matter if I take the doses at the same times each day? I took the pills 1/2 hour after eating and then ate a bit more after taking them. I have struggled with controlling nausea with every chemo, so I am scared that it will get worse with each dose. When does the H&F tend to start? Right away, or after multiple cycles?



    Thank you to every one of you who shared tips in this thread! I plan to read the entire thread tomorrow while the kids are at school. The fatigue is what I am dreading most. I have 2 very active kids (7 & 4). How will I keep up with them??

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    Done with the X is not working...so on Gemzar!!!

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    Oh, Blondie, I'm so sorry to hear this news and really hope that Gemzar will reverse that progression and get you dancing with NED or at least with the Stable Boy... And I hope the SEs will be kinder to you, too. Take care and stay strong, Angelfalls xx

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    thanks....

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2012

    Blondie please check in!

    Deena I believe approximate times are OK. Like 8 am and 8 pm give or take an hour. That's real life in the hospital where nurses are concerned I can tell you that. And as long as you eat some food ahead to slow it down and pad stomach. I use zofran for nausea. Its constipating so I start w half dose . Se's come on when they want to. I feel like roadrunner after steamroller flattens him today.

    But stopped X Saturday..

    Not everyone gets the whole HFS. I have slightly sensitive hands and feet. Mostly ninja diarhea attacks.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited January 2012

    Will do, my hands and feet aren't too bad with the 7/7 and actually one reason I am glad to get off it...

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Blondie... Really sorry to hear X is no longer working for you. Hoping Gezmar is your gun with minimal or no se's and will have you dancing shotgun with our guys. Ned, Reggie or the darling Stable Boy (does he have a name) ! Let us know how its going... once a diva always a diva.

    Hugz suz

    junior diva

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Had a really rough 2 days. Dont know if its X se's.. pleura issues or a mix of the two.

    Went to Costco Tues night to buy some cases of beverages for the guys if we had a snowstorm. Bought & lifted 6 flats of water gatoraide & such. Then loaded it all into my cars trunk... It was heavy but Ive always done the Cosco thing (mostly without help) When I got out of my car at home had a knifelike pain shoot though the pleura drain side... front & back. I could barely climb the stairs to the living area of our house (2ndfloor as we have no basements in Richmond). was hunched over for about 15 minutes then it eased off.

    Well yesterday (all day) everytimeI moved it would senda shot though me again. Then in the afternoon I had the weirdest pain just behind my belly button.. This had me hunched over as well. Spent the whole day in bed thinking it must be the pleura... by bedtime I was almost ready to go to Emergency (I HATE the ER...) Think its scarier than whatever Im dealing with. Called a nurse & talked for an hour... she thought it was a 50-50 call whether I should go, scared me even more saying it could be an embolism. (head in the sand at this point) Ended up taking another Oxy & an ativan, climbed back in bed for the night letting DH know I would call an ambulance if things got worse (also had a weird tight throat & slight radiating numbness on the right arm)..

    Today is first day of 7 off X.. pleura is still tender, bellybutton & stomach is sensitive but both hands now have the light numbness I get from X. This was definitely different from anything ive felt so far on X... does it sound normal for se's?

    Ive got a nurse coming in tomorrow so will have her look at it if its not much better.

    Hugs suz

    Just stoodup and pain behind belly button is back :P

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    Oh, Suz! That sounds scary! I wish I could help, but I'm just a Xeloda newbie :-/ I hope one of the real Divas is along soon with some wisdom to share. I also hope those pains are starting to ease off now, but if they get any worse, please go to ER. If you can wait until the morning, perhaps a phone call to your team? Take care, Angelfalls xx

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    Sounds like you've been through a rough couple days! I can't be of help, but I sure hope you're feeling better soon! (((Hugs!)))

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2012

    Suz, time to.stop lifting such heavy stuff? .you're well-being is.more.important. we have to save our backs and our ribs and be princesses now. :*)

  • Madtypist
    Madtypist Member Posts: 1
    edited January 2012

     I been taking Xeloda for 8 courses of 2 weeks on and 1 week off, the worse SE that I've had is the hand and feet - they feel like I'm walking on glass sometimes and they are cracked and bleeding.  I've been using Udder creme. 

  • singletona80
    singletona80 Member Posts: 44
    edited January 2012

    I use bag balm on my handds and feet but I think Im developing neuotherpahy, my finger tips feel numb sometimes, not all the time.  Since they reduced my dose from 7 pills to 5 a day I feel better.  A few times I have fely dizzy and faint , I wonder is that a side effect or could it be from the foods im eating.  Maybe too much sodium, i dunno

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