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All about Xeloda

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Comments

  • milehighgirl
    milehighgirl Member Posts: 397
    edited August 2013

    Veggie, I just started last Saturday so we're close together.  I found the compazine didn't work very well for me but the Zofran did.  I take it a 1/2 hour before Xeloda with food.  I was also on an antibiotic that was making me sick so I ditched that and felt much better.

    I also asked the doc. yesterday if I could go 7/7 instead of 14/7 and she agreed.  I'm on the same dose of 3000/day.  Side effects are supposed to be much less and the effectiveness is supposed to be the same.  You may want to try that route so as to give your body a break more often.  All of these drugs we're on are powerful and harsh on the body.  Let's pray they work for everyone.

    Sue

  • veggy
    veggy Member Posts: 4,150
    edited August 2013

    Im ust starting to feel decent not good being off of the xeloda. I thik it ay be just to harsh for me. I'd rather get a post and go on IV chemo than this pill. I'm not sure I ant to give this stuff a second chance.

  • RangerMom
    RangerMom Member Posts: 205
    edited August 2013

    Mutherflush, welcome to the xeloda board. There is so much information on here. I'm on my 8th round. The tx has been pretty good. I did have to switch from 14/7 to7/7 because of SE's but they are so much better now.  I'm really happy to be on this one.  I do agree with others on here that taking meds 12 hrs apart is important, take something for nauseau soon as you have a hint of it, cream your hands and feet, and get as much rest as you can.

    Linda

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited August 2013

    Anyone have eye issues due to Xeloda? I have what seems like pink eye but not. My left eye just doesn't feel right.  I have bad sleepy eye gunk in my eyes when I wake up in the morning.  I have checked, it isn't pink eye.  Just curious. Of course I do have 4 kids so it could just be something they shared with me.

  • RangerMom
    RangerMom Member Posts: 205
    edited August 2013

    Yes, I had the eye gunk in the morning and they would hurt and burn. Now that I'm on 7/7 instead of the 14/7, the eyes are better along with my hands and feet.  The eye doc sold me to get eye gel to put in my eyes when I went to bed.  Good luck with your SEs

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    My eyes will start to water, randomly (looks like I'm crying, sometimes).  Happens both when I'm on the 7 day cycle (more often) as well as when I'm off 7 days.  I was told to try an artifical tear type solution because watering can actually mean they are dry and are compensating.  I bought a long acting one (over the counter) and it does help.  If I continue to have problems with the eyes I may ck with an eye doc, but so far it's managable.

    The side effects from this chemo are weird.  I'm also getting the dry mouth, calf pain, skin pain, some abdominal pain, headaches, as well as hand/foot syndrome.  Some cycles I have all s/e, other cycles vary; however, consistantly have some issue with hands/feet in varying degree.  I find that to be very annoying because it's hard to function with the feet screaming.

  • milehighgirl
    milehighgirl Member Posts: 397
    edited August 2013

    Left, I haven't had any eye issues - yet.  I'm still pretty early in the game.  I'm on my off week.  Did pretty good yesterday (1st day off) but today have the funny stomach and rather tired. 

    SyrMom, I woke up this morning with a really dry mouth.  Took the better part of the morning and lots of water to get it to go away.  Also woke up with a runny nose so hopefully am not coming down with something!

    I'm amazed at how everyone is reacting differently to this drug.

    Sue

  • shazzakelly
    shazzakelly Member Posts: 620
    edited August 2013

    Hi I'm joining the Xeloda gang on Wednsday, after being diagnosed stage 4 a month ago I have multiple lung and bone mets but no major symptoms so feeling quite well and am still working and enjoying life. Hoping that Xeloda won't change that too much. I have appreciated all the posts as the info here seems a little more real than at the oncs.

    Although I think I heard the word diahreah at least 50 times at my appointment today. :-)

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    milehighgirl, oh, yes, I forgot to mention the runny nose - another s/e of X; although, not all the time!!  Like I said, weird!

    Welcome,  Shazzakelly - the big "D" is mentioned often as it can be a major s/e of X, as can constipation; I've been trying to eat at least 1 super yogurt a day.  Can't really tell you if it's made a difference.  But I can tell you when I didn't eat one for 3 days, had major constipation for a day! Who knows. Welcome to the thread. 

  • MamaPeg2
    MamaPeg2 Member Posts: 19
    edited August 2013

    GREAT NEWS! I had my 1st CT scan today after 3 rounds of Xeloda.

    1 small lesion stable

    1 small one GONE

    the larger one - shrank over 50%

    I was shocked! The side effects were worth it - for now anyway!

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Mamapeg2......that is fabulous news, so happy for you & yes, makes the side effects all worthwhile....:)



    Milehighgirl...I too have a runny nose. It is constantly runny & seems to improve slightly as the day goes on. My onc said it was definitely a SE & he cold give me something for it but that would create a whole new lot of SE's .....can't win!!



    (((Hugs))) to all.



    Karen xxx

  • RangerMom
    RangerMom Member Posts: 205
    edited August 2013

    So happy for you Mamapeg2

  • LauraOntario
    LauraOntario Member Posts: 60
    edited August 2013

    I also have eye issues.  My eyes water a lot.  And once I had a blood vessel burst, but I don't know if that was the Xeloda.  Over the past few days I have started with tiny little blisters.  I just finished my fourth round so I thought I had luckily skirted this SE.  The blisters burst.  I just hope I don't get a lot more of them.  Should I expect to get covered with them or anything?  Thanks for any input.

    Laura

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    MamaPeg2 ... very happy for you ... gives me hope everytime I hear such good news!

    Laura ... where are your blisters? Hands or feet?  From what the other ladies have said and so far from my own experience, each cycle can/does bring same and differing side effects; I don't get all the side effects all of the time.  However, new ones pop up all of the time!  In my case, I always have had some degree of problems with the feet.

  • formygirls
    formygirls Member Posts: 154
    edited August 2013

    Laura,

    I get blisters. They are painful. I get one or two at a time. The area becomes red, then blister opens and then the area becomes dark. I take Afinitor and Xeloda so am not sure what was causing it. My MO first thought it was some kind of shingles because my first outbreak was big and looked exactly like it. But they have continued and now they are more of an annoyance as other SEs for me are much worse. She now thinks it is just a skin reaction and a SE of a compromised immune system. I had cultures done on them and nothing came up.

  • LauraOntario
    LauraOntario Member Posts: 60
    edited August 2013

    Thanks, formygirls,

    My blisters are painful until they burst and the area is red around them.  They aren't worth complaining about right now, really.  I'm just hoping they don't end up all over me.  Thanks again.

    Laura

  • LauraOntario
    LauraOntario Member Posts: 60
    edited August 2013

    SyrMom,

    Sorry.  I didn't see your post.  My blisters are on my arm and on my hand.  Once the blisters burst, it just looks like I burned myself on the stove or something.  I also only get certain side effects every round.  Always swelling of my left foot, though.  Thanks.

    Laura

  • pearlady
    pearlady Member Posts: 390
    edited August 2013

    ShazzaKelly I will tell you that when I initially started on Xeloda the Big D was an issue.  But it did subside after the first two cycles.  My onc had said that most people on Xeloda the D does get better in time. I've been on other drugs that are much worse for that.  Hope you do well on Xeloda as its really not that difficult a drug to take. 

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Ok....this is a new one I think!!

    I keep getting what I think is a urinary tract infection....

    Not sure if its a possible side effect or I need some antibiotics.

    Anyone else had this issue?

    Thanks & ((hugs)))



    Karen xx

  • shazzakelly
    shazzakelly Member Posts: 620
    edited August 2013

    So hoping someone can help. I started Xeloda during the week and I've vomited up every dose bar 2. I usually keep it down for about 15-20 mins and then I'm violently ill they have upped my nausea meds but it doesn't seem to help. Has anyone else had this happen? Any suggestions as to good food to eat beforehand to help keep it down. I really want this to work.

  • milehighgirl
    milehighgirl Member Posts: 397
    edited August 2013

    Hi Shazza, I see no one has responded to your post.  I'm only a week ahead of you. 

    It was suggested that you take the anti-nausea med 1/2 hour before the Xeloda and take the anti-nausea with food.  I'm not sure which anti-nausea they gave you but compadine didn't work for me.  Zofran did the trick.  That might be worth a try.

    I also want to throw a question out there.  Anyone have hand cramps with this stuff?  I may have overdone the cleaning this morning but seem to have cramps along the little finger side of one hand.  Weird.

    Sue

  • slowloris
    slowloris Member Posts: 85
    edited August 2013

    Milehigh.. Ive had strange cramps also. In my lower leg, not a calf charlie horse, but running down along the side of my leg. I've never had a cramp there before in my life. Also my 2nd toe cramps downward, amost gets stuck in that position, painful, and have to massage it out,. I thought xeloda had stopped progression and was hopoeful to get my chest wall tumors removed, but alas, my PET done this week shows a possible spot in my neck, maybe a lymph node. test inconclusive, so back on x round 5 starting. My dose was cut down to 1500 2x daily, as i got hand and foot syndrome and big D pretty bad. I was on 1800 in am and 1650 at pm.

    There was some concern also about my lung. scan showed some shadowing, but not a definitive spot. my MO thinks it may just be inflamation from a se of X.  Has anyone else had any lung inflamation due to X?

  • saskie
    saskie Member Posts: 71
    edited August 2013

    Hi all, I have been having the cramping too.  Hands and legs a bit.  Has anyone noticed swelling of the legs/ and or feet.  This is a new one and not sure if it is related to the heat or something I should be worried about.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Saskie....I've had the leg cramps & yes, it feels like my feet & ankles are swollen!

    My jeans fit me the same but have been hard to get over my feet...lol!!

    My fingers are swollen too, I can't wear my rings.....& it's winter here..



    (((Hugs)))



    Karen xxx

  • LauraOntario
    LauraOntario Member Posts: 60
    edited August 2013

    Saskie:

    My feet and legs were very swollen, but it has gone down.  My left foot is still swollen.  I think it's just a side effect of Xeloda, but my doctor sent me for a test to see if there was a blood clot.  I'm not trying to scare you, or anything, but you should tell your doctor right away.  She also sent me for an ultrasound to make sure everything was working all right.  I'm sure everything will be ok for you as well, but you can never be too careful.

    Laura

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    I, too, was sent for a doppler ultrasound due to leg pain - have to rule out blood clots.  No blood clots, but the pain can be over the top.  I get it every cycle of Xeloda.  Doesn't necessarily happen daily, but when it does it's extremely painful to walk.  Last time I kept walking until I felt like an impact on my leg and suddenly the pain stopped.  Very, very strange what this med does.

    As far as lung inflammation, not sure.  I've noticed this cycle I have a mild cough.

  • saskie
    saskie Member Posts: 71
    edited August 2013

    Thanks for the info Laura and SyrMom

    I was able to get in to see my doctor today and also get the ultrasound done on the leg today as well.  Now I have to wait a couple of days for the doc to get the results.  Doc though that it was just muscular though - hope so!!

  • saskie
    saskie Member Posts: 71
    edited August 2013

    Kazzie - sorry I missed thanking you for the input too - My hands have been swollen and have not been able to wear my rings for quite a while now too.  The heat and humidity may have something to do with it too - 32C and humid here today.

    What are the normal temps there during your winter?

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Saskie....that's fine....:)

    Our winter temps are around 18 to 20 degrees.....still have swollen fingers though....lol

    I'm finding the most frustrating SE to be a runny nose, it is constantly running & dripping....my onc said it is a SE of Xeloda & he could give me something for it but that would cause another set of SE's!! Can't win......so I just go with the runny nose!!

    Fingers crossed for muscular pain xxx

    (((Hugs))) to everyone.



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    So far the most annoying and QOL issue for me has been the hand/foot syndrome - much more of the foot than hand.  There are times I can barely walk & the skin peels like crazy.  It's the difficulty walking & painful feet that drives me nuts.  The symptoms always seems to peek at day 5 on the cycle.  The other day I was going through my regular bedtime routine preparing the feet - I will rinse & soak them in cool water, then lotion up and put a sock on.  This time one of my heels felt like it was on fire, which is not new.  After cooling them in water, I lotioned up with both aquaphore and some aloe from an aloe plant, put on a gel sock I had in the freezer and instantly the burning STOPPED!  Smile Just thought I'd share ...