Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

All about Xeloda

12357…468

Comments

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Thats fine or could we get mods to changename of this one, it has a lot of good stuff in it.

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Kathy - how do we do that? (get them to change the name)  I would be fine with doing that....there IS a lot of info here already and not just on HFS stuff.  Just thought we might we get more participation if people know it's just all about Xeloda  <--- hey, maybe that's a good name for the new title  ("All About Xeloda")  --or--  "Everything you Wanted to Know About Xeloda, but Were Afraid to Ask".   ?????

  • Suze35
    Suze35 Member Posts: 559
    edited August 2011

    justjudie - that is great news!  Yay for Xeloda!!

    Lynn - Like Marybe, my doctor also told me I can go to 10 days on if the symptoms get bad, or we can reduce.  I'm on 1500 2x/day.  I don't see how dropping a little bit will be a big problem - you have to find the right balance of minimal side effects and maximum effectiveness, sometimes it is just that little bit.  I hope your MO doesn't give you too much grief!

    How is the depression doing for you all?  I'm finding myself a lot more down than I'm used to - I'm not on anti-depressants, I tried Effexor but couldn't tolerate it.  I'm thinking of asking for something else, do you think it would help?

    I hope it is okay if I post here - I'm not Stage IV (although we all are unfortunately expecting it down the road), but not many women are taking Xeloda.  I really appreciate being able to see, read and relate to others in my shoes!

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Suze:  I guess I'm just worried that if we drop it too low, it won't work on the cancer cells.  THAT is what I was TRYING to find out when I called the MO...is 1000 2x/day going to work?  I can tolerate some side effects, but I don't want to be miserable...ya know?

    I'm doing ok depression-wise (knock on wood).  I do take an Ativan at night to help me turn off my mind and go to sleep. Maybe you could try a different one? Kinda like with chemo....you just gotta find "the one" for you.  Best of luck!  And I'm sure others will come along with some suggestions for you.

    I don't mind at all that you are posting here!!  :)

  • stitchyphish
    stitchyphish Member Posts: 7
    edited August 2011

    Suze:  Just popping in to say I think I had symptoms of depression when I was on Xeloda and I think they even lingered after I stopped taking it.  It's not your imagination, and it was definitely pretty subtle as it started.  I was only on Xeloda for 2 rounds (each round was 3 weeks, 2 on and 1 off), and the scans came back and showed progression, so I moved on to another treatment.

    Now I'm on a trial.  The depression is gone.  Crossing fingers.  I need to find something that works!! 

  • Suze35
    Suze35 Member Posts: 559
    edited August 2011

    I can understand that worry Lynn - I'm sorry you couldn't get any answers from the PA Frown. 

    I've weaned off my Ativan - it was just messing with my head too much I think.  But maybe I'll add a small dose back in.  There isn't anything worse than that racing mind at 2:00 AM!  Then I have to put the TV on to some dumb sitcom to even settle down, which interferes with my sleep even more.  And melatonin gave me headaches also.  We just can't win for losing sometimes.  I'll talk to my MO about trying another drug.

    I appreciate the welcome.  I'm in such a gray area - I call myself "Schroedinger's Cat" because I'm in that dark area of still having a small chance at a cure, but most likely not.  So I get a lot of comfort in lurking on this board.

    Stitchy - Good luck on your next treatment, I hope it kicks cancer's BUTT!  I'm sorry to hear the Xeloda didn't work for you.  But thank you for your input - throughout this whole ordeal I've been pretty good with the depression, so it has been noticeable on the Xeloda.  I'm glad I'm not alone.

  • justjudie
    justjudie Member Posts: 196
    edited August 2011

    hi Suze,



    are you currently on an anti depressant? If not, I would suggest talking to your Dr about starting one. It makes truly a world of difference, I take Zoloft and many women on this board are on anti depressant and/or anti anxiety meds. Whatever helps you through this camcer crap, I say!!



    Judie

  • MustangIA
    MustangIA Member Posts: 54
    edited August 2011

    Wow - this thread has grown!  I hadn't really been checking back in on it because I still haven't had any symptoms of  HFS.  I had no idea so many other things had popped into this!  Would be great to have a thread just about Xeloda and I am definitely a Diva, so Xeloda Divas works for me.  Cool  Obviously, I'm kidding, but my DH may think I'm right on on that.  So...anyway - I am almost done with round two (Friday).  As I said, no HFS symptoms at all which I'm ecstatic about, but nausea was definitely worse this round for me - I'm in week two and still taking Zofran before each dose.  But the biggest change over last time is the fatigue!  Holy crap - I'm sleeping so much right now!  I slept 11 1/2 hours Friday night, 10 1/2 hours Saturday night, 9 hours Sunday night and another 10 1/2 last night.  I used to function on 7 a night.  This morning my alarm went off at 5:45 and I just turned it off.  My husband (works nights) got home and woke me at 8am.  Needless to say, I was late for work.  Decided to work from home one day a week (tomorrow) just so I can sleep right until 8 and just work in my PJ's.  Might have to do a couple days a week in cycle 3 and 4. 

    Suze - I started taking Lexapro and Xanax when needed - has definitely helped with the depression/dark days.  Better living thru pharmacology!!

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Y'all, I asked the mods if we can rename this thread as suggested by Lynn, above. :^)

  • Unknown
    Unknown
    edited August 2011

      Lynn, Since you started the post can't you go to edit and change the name? 

       I took antidepressants for awhile....celexa and effexor.....I didn't like either one because I felt like they made me void of any feelings at all.....I wasn't really sad or upset about having cancer, it was just that I felt like there was just too much crap going on in my life and not enough time to do things and it felt like the walls were closing in....so I went to a psychiatrist and think I should have gone to a pyschologist since I think the psychiatrist just gives you a pill and not really any advice....at least that was what this one did.  When I told her I didn't think the one worked, she went Well, how about we try this one? and gave me a new script.  I only noticed that the pill must be doing something when I was watching a movie that always made me laugh out loud and I didn't find it funny at all....I just didn't feel anything and I did not like that so weaned myself off the pills (it cautioned you not to just stop) and told her I wasn't coming back .  Isn't St.John's wort supposed to help with depression?

    You can find out if Xeloda is working about only two rounds?   If so that is wonderful because it seems like on so many I have done we had to go at least three months. 

    I don't think I am having SEs yet, but for sure am feeling really tired and sleeping way more than is normal for me.  Last night I used the working hands instead of bag balm....I like it.

    Oh, I had carpal tunnel surgery and it worked.  At first just my hand was going to sleep then it got to the point where it would go all the way up my arm and it hurt....it was odd that it only happened when I was sleeping.  Also I found my grip was gone and I could not open jars and sometimes had difficulty with door knobs. 

  • moderators
    moderators Posts: 8,739
    edited August 2011
    Already done Wink
  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Thanks Mods!!Cool

    Marybe: you can edit your post, but not the title.

    Mustang:  I am so glad you have not had any HFS yet. Hope that continues for you!!  I hope you can get the nausea under control soon.  At least you have the Zofran.  I couldn't take it....added to my constipation. Bah!

    So far, I have not had much fatigue - guess I'm lucky there!  I had everything else though so maybe it balances things out!! Wink

  • Unknown
    Unknown
    edited August 2011

    Ok, I see said the blind man. The mods are speedy this evening.   

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Sorry I forgot about xeloda divas. Hope all a bout xeloda is easy enough to find

  • grammadebbie
    grammadebbie Member Posts: 6
    edited August 2011

    I've been on Xeloda now since the middle of May...one week on and one week off.  The HFS got pretty bad so my onc said to reduce from 1850 2x/day to 1500 2x/day and that has helped.  Still bad but now tolerable.  My TM's are dropping but my lungs are still filling up and I need another thorocentesis...have had 6 of them in the last year!  UGH!!!  Anyone else with problems with pleural effusion?

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Wow, Debbie, that's a mixed bag there. Signs of improvement yet new effusions. Thoracentesis: does it hurt? Little numbing needles and one big needle? Sounds rough and scary. poking in your chest.



    Re xeloda, I just woke up from dreaming that I had embarrassing diarrhea everywhere I went. Turns out the pressure is starting for real. TMI ? Anyway, arras to go back to sleep where dream meets reality.



    What a life we have. Kathy

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    We can still refer to ourselves as the Xeloda Divas!!  The title is probably best as-is....more "general" if someone is searching for info on Xeloda.  :)

    So has any Divas out there had this?.....it's like I am developing callouses on my heels.  Is it just the drying effect of the chemo and the HFS stuff?  When I put lotion on, it feels better....like the softer I can make them, the better they feel.  But it also feels like I'm walking on something (like a callous) so I don't know.  Normally, I would have a pedicure and let them remove all that dead-looking skin, but I'm scared to do that - all that rubbing and stuff would surely set off the HFS.  What to do, what to do?? 

    Kathy:  that was a horrible dream - hope it stays in your mind and not in reality!!

  • stitchyphish
    stitchyphish Member Posts: 7
    edited August 2011
    Marybe - my oncologist is pretty aggressive about scanning.  I've been diagnosed as Stage IV since September, and since then, the tumor has been growing almost nonstop (I did find a treatment that worked for about 3 months).  At it's widest points, the tumor is 17.8 cm x 19.4 cm x 7.9 cm.  So, basically, my doctor is keeping a tight leash on all of my treatments.  If I see progression after 2 rounds, we're on to something else.  It's pretty damn scary, actually.
  • Unknown
    Unknown
    edited August 2011

       I do have callouses and it is because I walk improperly and have since I had neuropathy....I watched the podiatrist trim them off with a dremel and I had my husband get me a little one and I do my own....it's just like sanding them off and I did it last night.  Today my fingers look like I have been scouring the tub or doing a lot of dishwashing without gloves....neither of which I have done for a long time.....this place should be condemned as I was telling my not darling husband last night.  Like I picked up this magnet that fell off the fridge door several days ago this AM and he said Oh, I was wondering what that was.....Would it have been too much for him to pick it up and see what it was!?!!?    GRRRRR.  They are red, not bright red, and have these little tiny lines and cracks in them and look sort of puffy, but I am not having discomfort with them  (except for the finger where a patient accidently bit me last week when I told her to close down on an xray)  Today is day 7 so this may actually just be from doing yard work (even though I am wearing garden gloves for the lst time in my life).  I have been sleeping with a combo of bagbalm and worker's hands. Today I get my lst herceptin treatment and will see the PA and will ask her what she thinks about my hands.   I wish I were doing 7 days because then I would be having a week off starting tomorrow.  I am doing 1000 mg in the AM and 1000 in the evening for 14 days.  I do not have any diarrhea or anything else.....maybe fatigue, but it isn't bad.....or maybe I just need more sleep than I used to.  I really think that maybe this has done something to my appetite....I have not stopped eating, no danger of that with me, but I am not eating because I am hungry and am not scrounging around for food at night the way I used to do just because I am not hungry. I wonder if they will give me steroids with the herceptin....then I want to eat everything and it's gotta be right now!!

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Marybe:  They used a dremel on your feet?!  Egads!  I hope I'm thinking of the wrong thing. That does not sound like fun!  I don't think these are your normal callouses - somehow they are caused by the HFS I think. 

    I'm just not sure what to do about it and don't know who to ask - except you guys!  My last mani/pedi I had them not do any massage on my hands or feet and skipped all the scrubbing on my feet too. I was fine...no issues.  Do I dare let them do that this time though to get rid of those and all that peeling?? 

    My appetite has been all over the place....sometimes I'm fine (like normal) and sometimes I'm just not very hungry and then there are days I can't get full.  Very odd....

  • Suze35
    Suze35 Member Posts: 559
    edited August 2011

    Lynn - no callouses here, but I'm not really getting the hand/foot issues, which I know makes me pretty lucky.  I don't know if I'd do a pedi just in case it makes it worse.  I have one of those silly ped-egg things, maybe you can do your own and slowly take the dead skin off so you can gauge the reaction?

    Marybe - my house is always a disaster these days, my poor DH comes home (he travels for his job) and just shakes his head.  He is great about trying to catch up for me, and my mom lives with us for now and helps a lot too.  It is tempting to blame my fatigue on just needing more sleep, lol, but I know it is the drugs - I was literally falling asleep standing at the counter last night in my kitchen!  I've always been a "tired" person, but that was a bit more than I'm used to Tongue out.

    Wugh the nausea is starting to hit, I'm on day 10.  I had to take a Zofran yesterday, but that stuff never works all that great for me.  The only thing that helps - for a short bit - is carbs, which I am trying to avoid.  My appetite is actually more than normal because of that I think.  The headaches are also becoming more frequent as I get further into this round, but at least I can manage those with meds. 

    One problem with the Xeloda is that it is tempting to just take a dose off to help with the nausea, but I know I don't want to do that.

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Suze: I've had a pedi before (since I started on Xeloda) and it went fine....did not make it any worse, BUT they did not touch the bottom of my feet.  Maybe I should try one of those Ped-Egg things.  I've seen the commericals for them....they look painful though - on healthy feet!  ;-)

    The Zofran worked ok for my nausea, but it gave me headaches and added to my constipation so they changed it to Compazine (sp?).  It works GREAT!!  There are several anti-nausea meds available....you just need to keep trying till you find one that works good for you ALL the time! 

    I know what you mean about just not taking them....tempting isn't it?  But not good for getting results!  Guess our onc's have to trust us a bit to give us this take-at-home stuff.  I laughed thinking how this could never happen with IV chemo.  Not like I could just crimp off the line and say "that's it for today...don't think I want anymore of this".  LOL!!

  • Reneepals
    Reneepals Member Posts: 64
    edited August 2011

    Xeloda Diva here! I am on the 7 days on, 7 days off protocol. I will tell you it seems like with me, the HFS got bad in a way where it was either my neuropathy or the HFS (I couldn't tell). It felt like I was burning my feet on beach sand. But that was 1 cycle ago. I was wearing slippers to work last cycle, now I am back to normal shoes and not any really bad foot pain to complain about. Same thing with my G.I. issues, they seem to have backed off. So maybe Xeloda has some breaks! I am enjoying wearing shoes again, ah the little things in life. Apple it seems that using lotion at night i.e. bag balm or Avon's foot cream work's wonders. But I don't lather it on. They don't feel like a baby's butt, but they aren't peeling. So I will stay with once a day.

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Wow, Renee, that is some good news on your trends! Im adjusting to NOT being constipated, avoiding the big D. So, no more almonds, decrease dairy big time, etc. Freaking forgot to get applesauce when I picked up my wheelbarrow fullmof Rx's at Publix. Forget forget forget!



    I still Dremel my big callouses! They grow so fast!



    K

  • Lynn1
    Lynn1 Member Posts: 209
    edited August 2011

    Renee:  How did you convince your onc to put you on that schedule?  I mentioned it to mine, and he just said "we are going with standard protocol". 

    It does seem that the se's from this sorta come and go and vary in intensity.  Oh the fun of chemo! 

    Ok.....if y'all can dremel your feet, surely I can get a little pumice stone rubbing!! 

  • Suze35
    Suze35 Member Posts: 559
    edited August 2011

    Lynn - okay, that visual really cracked me up, lolol.  I can just see the look on my chemo nurse's face if I did that!  HAH!  TBH, the ped egg seemed a bit useless to me - didn't really work as well as advertised, and didn't hurt.  But given what other women have apparently done, I think you'll be fine with a light pumice Tongue out.  I've noticed the come and go nature of the SEs - today I'm not as nauseated as yesterday, but have a headache.  I have some Compazine here, but never tried it - it didn't work when I was pregnant, so figured it wouldn't now.  But I think I'll give it a go next time.  And then push for something different if that doesn't work!

    Renee - I'm glad to hear that schedule works well.  If my SEs get too bad, my doctor said it was an option. 

  • Unknown
    Unknown
    edited August 2011

    It's not a big huge dremel....just a little one like someone would use to polish jewelry maybe....I don't know what they are for, but the head of this thing is only about as big around as a dime or a niclkel and I don't run it on top speed and you can just see the callous come off.....I used to cut them off with the scissors because I get sick of going to the podiatrist all the time.

    Today ends Day 7.  Both the PA and the doc at MDA told me if the SEs get too bad, just to stop it for a day or two.  Also I plan on going to 7 days if things get too bad next week and since my onco has not exactly been batting 1000 with the treatments he has suggested, I am just going to tell him that is what I want to do and I will take full responsibility if it doesn't work. 

    Right now my eyes burn and I feel sort of achey the way I did from neulasta and all I got today was the herceptin.....no one has a reaction to herceptin they tell me....or at least very few so I am starting to think that I just get the opposite of what the warning say....except for abraxane, I got everything they listed with that one.  

  • steelrose
    steelrose Member Posts: 318
    edited August 2011

    Oooooh Marybe! Just the mention of cutting off callouses... YIKES! And I could not have had a pedicure during my Xeloda run... I had major nail issues too. The nails grew funny and had lines on them. Even trimming them hurt!

    "All about Xeloda" is much, much more professional sounding than my "Xeloda Divas." As long as we can still be bitchy and demanding, I'm fine with it.Wink Great thread, Lynn! 

    xoxo

    Rose.

  • petjunkie
    petjunkie Member Posts: 39
    edited August 2011

    A note for those that have nausea on Xeloda. My first 3 rounds (it was 2 months on, 1 month off at the time) I had pretty bad nausea. I was living on toast, applesauce, and canned peaches. I lost 18 pounds the first 6 weeks (which i needed to lose). 

    The nausea I had was a bit different for me, it was more like a gnawing stomach pain and zero appetite. My oncologist nurse suggested that I take my Prilosec twice a day instead of once. I rolled my eyes, like "yeah, great, antacids will fix it." But she was totally right, I started doing that and haven't had the issue since. Worth a try for those of you that just have that icky stomach feeling all the time. 

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2011

    Thx, Petjunkie,

    now me:  my hands are getting ready to blister.  the same littel red spots are creeping up and those turned to blisters on doxil   but last night i creamed and gloved and it looks better.  house cleaning without gloves yesterday was not smart, eh?   Be smart, be proactive, silly-Kathy!

     K-lo

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.