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All about Xeloda

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Comments

  • Trusthopecure
    Trusthopecure Member Posts: 7
    edited June 2015

    I'm opposite of you. Doc is switching out my Gemzar because it worked great on my bone mets but not reaching my liver mets. Headed for xeloda, any advice?

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2015

    trusthopecure-


    advise is to realize that the first few cycles will bring many different side effects. Some will go away and never come back, some will stick with you. Hang in there. But if you don't feel good, let your doctor know. They can change the dose or the schedule you are on. You would be surprised how much relief you can get if you change one simple thing. So speak up if you need to.

    You will mostly hear about hand and foot syndrome. You will also feel fatigue. some get nausea ( mostly in the beginning). You will have some digestive upset of one sort or another. All are manageable especially if you say something.

    This group is a great group for support and reference.


  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2015

    Trust, what dose are they putting you on? My first cycle was for 7 pills, 4 in am, and 3 in pm. 2 weeks on and 1 week off. I thought I was going to die! The cramping, diarrhea, etc. etc. Second cycle I was put on 4 pills a day 2/2. MUCH BETTER, and now I am tolerating 5 pills a day. I have a rash that won't go away, onc told me I could take a 2 week break and to just do what my body will tolerate. My TM's continue to go down, which is what the end result is what we want. We are all are different in what SE's we get.

    Good luck!

  • apackoftwo
    apackoftwo Member Posts: 64
    edited June 2015

    I just received results of scan yesterday - bone pet and contrast CT - on Xeloda since Sept. 2014 - it kept my bone mets somewhat stable but has failed liver mets, which I hear is a common scenario - huge increase in size of two mets in liver, so off and onto Navelbine, which I am not looking forward to since I have so far to travel for tx. I know some have great results on Xeloda and I hope you will be one of them trustopencure. I did get a 10 month run with it. Susie

  • yingliu
    yingliu Member Posts: 1
    edited June 2015

    Hugs :-)

    My mom (68 years old) is in Beijing, China. My mom has been taking Xeloda since September, 2014. She was on 6 pill / day, 2 weeks on, 1 week off. Her 2 markers on lung was stable. 3 months ago, her doctor decreased her dose to 4 pill / day. Her recently CT scan shows the tumors are slightly bigger. Her doctor wants her to go back to 6 pill /day.

    I read some of the posts here, some of you mentioned that the does was increased later. But on Drugs.com website, it says "Once the dose has been reduced, it should not be increased at a later time." http://www.drugs.com/dosage/xeloda.html. I am very confused and worried.

    At this point, we don't know if the increase of the mets was caused by Xeloda didn't work or it's caused by decrease of the dose. Does any of you have this kind of experience?





  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Well gang : I'm off Xeloda and on to Ibrance ! My tumor markers are on the rise and my Oncologist doesn't want to wait until they climb too much higher .

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    mscal, good luck on the Ibrance. That will be my next stop when X stops working.

    We need a cure! But so thankful for the drugs we DO have!

  • 20130502
    20130502 Member Posts: 162
    edited July 2015

    Has anybody tried the cold slippers and mittens with Xeloda?

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Never heard of them, what are they for? H/F syndrome? I have that, but it's not too terribly bad, I just use lots of lotion, bag balm or coconut oil.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2015

    My feet have gotten worse in the last few days and even walking a step is quite painful. I've been using A&D ointment on my feet after experimenting with organic aloe vera oil and Miracle Foot Cream. Anyone have any tips about perhaps some kind of insole I could wear? When I get blisters, I use those band-aid blister pads which work well. Tried using mole skin on the balls of my feet and it helped but then when I had to peel it off it hurt like hell and took a layer of skin off the bottom of my feet.

    Appreciate any tips!

    Thanks, Susan

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Susan, that just sounds horrible, I'm so sorry you have that to deal with. I am thankful that my H/F is not too terrilbly bad. What about some sort of memory foam inserts for your shoes, or a gel one? Good luck.

  • mandymoo
    mandymoo Member Posts: 632
    edited July 2015

    Hi Susan, have you contacted your oncologist as I think that your dose may need to be reduced. I went through the same problems and I got my dose reduced. I also changed the cycle to suit myself. I realised that on day 12, my blisters would come up and my explosive diarrhea would also appear. I was on a 21 day cycle (14/7), and I heard that some girls were on the 14 day cycle with less severe side effects (7/7). My oncologist will only agree to the 21 day cycle or 28 day cycle (14/14) because he wants a blood test before I can go on to the next round and that did not suit me. So I decided to keep on the 21 day cycle by taking X for 11 days and having a 9 day break. I have been doing this for the past 18 months (I have been on X successfully since November 2012). I still have the side effects, but very mildly. I still have cracks/splits in my feet, but I can walk for an hour at a time. I still have D problems, but not so explosive anymore either.

    I have tried all sorts of creams and Moo Goo or QV cream work the best for me, but they do not cure it. Placing my feet in a bucket of ice water helps cool them down for a while, because Xeloda leeches out of the small capillaries in the soles of our feet and also our hands.

    Hugs

    Mandy xxx

  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2015

    Thanks Mandy and Goldie!

    Bought gel shoe inserts that I will try. Talked to my MO about dosage cycle. I'm on two week on, one week off. She said the 7/7 cycle would be too much of a dosage reduction.

    I'm on my week off and trying to go easy on my feet. Four days into my chemo vacation my feet are finally feeling better, not normal but better.

    Will try ice baths for my feet but it's chilly here in SF during the Summer!

    Big hugs, Susan

  • MustangIA
    MustangIA Member Posts: 54
    edited July 2015


    Hello.  Just finishing my first round of Xeloda today.  I was on this drug (and this thread) four years ago when I was first diagnosed Stage IV and have recently started it again in hopes it will work as well as last time due to recent progression.  I went back and reread all of my posts to see what I was in for, but the nausea this time is so much worse.  I am on the 14on/7 off schedule (for now - will be begging for 7/7 soon) and really started getting nauseaous on day 9.  I have vomited every day and have a lot of indigestion.  Just curious if any of you currently on this drug have nausea and what you are doing about it.  I see my onc on Thursday, but want to be prepared on what to ask for.  In addition - those of you on 7/7 schedule - how did you get them to agree to that and are you having good results on it? 

    Sorry for the rambling - but I am trying to be functional through this and the nausea is getting to me...it's only the first cycle!  Help!

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Mustang, my nausea is very mild if at all. I am doing 14/7 too, 5 pills a day. I started out on 7 pills and thought I was gonna die! Onc dropped me down to 4 pills and now I am on 5. I say hang in there through this cycle and see if there is a change, and then ask for less pills? Do they do TM's on you? May I ask why you stopped the X and have you been on treatment since you stopped X. I would love to live without treatment for awhile, but didn't think that was an option. Do you have anything to take for the nausea?

  • MustangIA
    MustangIA Member Posts: 54
    edited July 2015


    Thanks for the reply Goldie.  I am on 6 pills a day, three in am, three in pm.  When I was initially diagnosed in 2011, everything they found (mets in my ovaries/abdomen) was removed surgically when found during a hysterectomy.  We decided to do four rounds of Xeloda at that time to make sure to hit it hard and then transitioned to a anti-hormonal.  I was on Femara for 3.8 years no evidence until my markers started creeping up again earlier this year.  We did a diagnostic surgery and they found progression on my small intestines.  We did three months of Afinitor and Aromosin but were not getting markers to come down (now in the 200's) so we switched back to Xeloda for now.  Not sure how long I will be on it this time - I guess until it no longer works?  He did mention possibly staying on this until markers come back down and then trying Faslodex or Ibrance, but not sure.  First this needs to work! 

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Mustang, perhaps if the markers go down, he can lower your dose. My onc dropped me right to 4 pills and then weaned me up to 5. I know I can't tolerate 7 pills, and I'm scared to do 6. I see him Thursday, I hope my markers are stable or still going down. Last month they were 60. I did Faslodex, it didn't work for me, but oh was it easy! No SE's from that at all for me. I have been watching the Ibrance thread, seems like the most problem there is with blood counts dropping way low. That is what my onc will put me on if/when the X quits working. Good luck and keep us informed.

  • Trusthopecure
    Trusthopecure Member Posts: 7
    edited July 2015

    thanks, I'm cycled through two weeks on one off with 3 pills 2x a day, twice. The side effects i have had is nausea, no appetite, constipation! No h/f symptoms yet!

  • Trusthopecure
    Trusthopecure Member Posts: 7
    edited July 2015

    I have two week on one off cycles of taking 3 pills 2x daily. Nausea, constipation, seemed immediate. Trying to take later like noon n midnight instead of morning and night. My tumor markers are up from Gemzar , I've cycled twice now. I'm hoping they start to come down , it's so scary

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Trust, you get up at midnight to eat and take pills? When I did 7 pills, I had horrible explosive diarrhea, no constipation. And the cramping was horrible, and I got this horrible rash. Which I still have, but not near as bad. Praying X works for you and brings your TM's down.

  • mandymoo
    mandymoo Member Posts: 632
    edited July 2015

    hi Goldie0827

    I have been taking Xeloda for almost 3 years now and I have also started to get a rash on my legs and arms mainly which I am pretty sure is from Xeloda. I see my oncologist next week and I am dreading telling him about the rash because I am worried that he may take me off X. What do you take to relive the rash and the itching especially ?

    Warm hugs

    Mandy xxx


  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    Mandy, I just deal with it. I have sensitive skin to begin with, so this does not help. I just try not to scratch too much and keep lotion on it. I have rash on the tops of my thighs, arms, and chest. Used to have it on my back, but I took a 2 week break from X, instead of just one and the rash cleared up about 50%. I've had it from the get go. It was really bad when I did 7 pills, which was just one cycle. Congrats on 3 years, may you have many many more!

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited July 2015

    hi everybody. I am new to xeloda -started 11 days ago and I am SO tired. Relieved to read of so many others feeling the same. I have stomach cramps as well. Is that normal? I wasn't as tired as this on my last chemo but am on the higher dose at the moment. It's hard with the school holidays and 2 kids one of wh has severe autism. BArbar

  • MustangIA
    MustangIA Member Posts: 54
    edited July 2015

    Hi, Barb.  Yep - tired for sure.  Are you on the 14 on/7 day off schedule?  I can tell you that I am on my break and I have felt pretty good the last couple of days.  I have to start again on Wednesday.  I did talk to my onc about switching to the 7/7 schedule, but he wants me to try to do 4 rounds at this schedule and then we will discuss a change if we are seeing good results.  For those of you that have been on this awhile, how long did it take to see some results?  My marker went up after the first round...not very excited to see that.  :(

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited July 2015

    My markers went down right away with my first round, was taking 7 pills a day. I couldn't handle it. Barb, that is probably what is causing your cramping. How many pills are you on? I am currently doing 5 pills a day now, but I did take a 2 week break, instead of the usual 1 week off and my markers went up, from 60 to 70.

  • mandymoo
    mandymoo Member Posts: 632
    edited July 2015

    I have been on X for 3 years in November. Tumour markers started to go down after the first 6 weeks and continued to go down slowly for about 18 months, and I have been stable since then although they went up again for 3 months but I had a virus and they dropped again back to 38 last time. Blood test results today will hopefully show normal again. Just remember ladies that tumour markers may not necessary be accurate in your cancer journey. Also each red dell in your body has a life cycle of 42 days which is 6 weeks. So it pays to wait a while for X to show whether it is working or not. I hope that you all get fantastic results, although we know that the success rate of X is not 100% xxxxxx

  • blondedoris
    blondedoris Member Posts: 57
    edited July 2015

    will be asking a break from X to try paclitaxel; X was shrinking the lung Mets and no new bone mets appeared but the lymph mets are growing. So the plan is to thump the lymph mets with the paclitaxel and then come back onto X and Vinorelbine once they've been beaten into submission.

    Hoping it carries on working for everyone else! x

  • Dover_Girl
    Dover_Girl Member Posts: 5
    edited July 2015

    I'm also starting my first round of Xeloda. So far I have only had headaches. I keep checking my hands and feet. I know it is early days.

  • Dover_Girl
    Dover_Girl Member Posts: 5
    edited July 2015

    As a newbie to Xeloda, I really appreciate reading all of your comments. Keep the Faith!

  • Dover_Girl
    Dover_Girl Member Posts: 5
    edited July 2015

    Hi Susan: Thanks for sharing your thoughts on not being fearful. This is so helpful to me right now.

    Best Wishes Penny

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