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All about Xeloda

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Comments

  • OBXK
    OBXK Member Posts: 689
    edited May 2013

    My fatigue seems worse on my recovery week. Anyone else have this experience?

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited May 2013

    The first two cycles the fatigue started about day 12 and continued a day into the recovery week on cycle 1 and in cycle two it was more like 3 or 4 days into the recovery week. So we change the cycle to 7/7. Cycle 3 I got fatigue on day 6 and all through the recovery week. Which brings me to the present where I still have fatigue and am on the first day of cycle 4.



    My red counts are low but not low enough to being causing this fatigue. It came on much harder than I was expecting. I hope it gets better after a couple of 7/7 cycles.

  • OBXK
    OBXK Member Posts: 689
    edited May 2013

    I start round 4 Wed. - 7/7 - I hope I feel a little more energetic. I can only feign being awake and alert for about 3 hours.

  • maggiethecat
    maggiethecat Member Posts: 9
    edited May 2013

    Hello ladies,

    Thanks for the info regarding Xeloda SE, I'm been on it since Feb/2013, has anyone experienced darkened skin in their fingers (hands) and toes( bottom of their feet), looks like just finish working on my car. Thank goodness no peeling or cracking yet, I'm on my 4th cycle (14/7). My onc said that I got a free tan.



    Greatly appreciate for all the recommendations provided, now I am more prepared than ever if any of the SE symptoms surface.



    Praying for all and take care :)

  • maggiethecat
    maggiethecat Member Posts: 9
    edited May 2013

    Hello JoyE1947,

    It is very encouraging to hear that we can continue to take Xeloda, wow 13 cycles, I am on my fourth cycle and had asked my onc how long can I take the med, I am worried about the cytotoxic part of this treatment, SE is gradually subsiding, I can tolerate the drugs better.

    How is your energy level, I just want to go back to my regular routine and live normal again.

    Thanks for your information.

    All the best!

  • TXGigi
    TXGigi Member Posts: 39
    edited May 2013

    Maggiethecat

    I have been on Xeloda 3 1/2 years.  My skin is not darkenning but I do have dark spots on hands.  I have one on the bridge of my nose that really annoys me.  I just use concealer.  My dentist also showed me the inside of my mouth.  It is totally freckled.  Better in there I guess than on my face.  It looks horrible and my dentist was all shook up.  I told him it was a SE and calmed him down.  I guess he thought I had leoprosy or something.

    Take care.

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2013

    Txgigi,  That is so awesome you've been on Xeloda for 3 1/2 years; obviously, it must be working!!!  Gives me hope that can happen for me as well.  How long did it take before your scans reflected positive results? Which cycle are you on, 14/7 or 7/7?  Did you have to have your dose reduced along the way?

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited May 2013

    TXGigi......I am also triple neg & I'm starting round 6 of Xeloda tomorrow. I had a scan this week & it showed a slight reduction in one of my liver mets.....yay :)

    I have extensive bone mets & 3 liver lesions. I'm just wondering where your mets are & what the extent of your response to X has been.

    3 years sounds wonderful & gives me hope....:)



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2013

    Kazzie61 ... I also have 3 liver mets and extensive bone mets; just finished round 2 this a.m.  Are you on 14/7 or 7/7?

  • tammie
    tammie Member Posts: 13
    edited May 2013

    I'm just finishing my 4th cycle of xeloda 2weeks on 1 week of 3000mgs a day. I have found it to be pretty easy have to eat a little within an hour or so of taking it. The hand foot thing has not been too bad. I do have a couple of questions, I seem to be developing weird brown spots almost like freckles on my feet of all places they don't hurt or anything but are definitely weird has anyone else had this? I also noticed what appears to be veins popping up on my legs that weren't there before and am bruising easily? Hope you all are doing well and am curious to know if anyone else is experiencing these issues? Hugs to all n thank you for being here

  • maggiethecat
    maggiethecat Member Posts: 9
    edited May 2013

    Tammie, I am experiencing the same, brown spots on the bottom of my feet, and darkened fingers tips, nails are harder than before and ridges started to surface, HFS is still tolerable, after 4 rounds, stomach is more settled, nausea feeling subsided, acid reflux continues.

    Thanks TXGigi for the encouragement, you are amazing, you have set an example for me, will march on with head up and not feel sorry for myself anymore.



    Very much appreciated, take care!

  • OBXK
    OBXK Member Posts: 689
    edited May 2013

    My fatigue will not go away. Started round 4 yesterday. I see my MO next week, I'm on 4000mg 7/7, does lowering the dose help with the fatigue? I haven't had scans yet, I hope it is working! I love that it is a pill, I hate going to the infusion room, my port is always a nightmare.

  • Reggata2
    Reggata2 Member Posts: 3
    edited May 2013

    I would like to share my good news with all you ladies...I have widespread bones mets for 4yrs, and was diagnosed with 3 tumours to my liver in October 2013, first 4 cycles of Navelbine didn't work for me, went on xeloda in Jan with excellent results after 4 cycles scan results showed they had shrunk and calcified with no activity hurrayyyyyy. Just about to finish cycle 6 then I will come off it.

    This drug is amazing the side effects are not too bad get stomach cramps and diahorrea occasionally, palms of my hands and soles of my feet are red, dry and sore. However that has only just come on with cycle 6, will be glad to finish this cycle tomorrow. I wish all you ladies who take this amazing chemo good luck. we are living with this disease not dying from it...there are so many fantastic drugs coming out all the time lots of hope for all of us....prayer is very powerful I have good faith. I wish you all well this can be a tough journey at times I have been going through it for 6/12 yrs. I will return back to my job next week after being off since last October can't wait. I am a nurse so have good knowledge on this horrible disease, I consider myself blessed and intend to carry on as best I can. Well wishes to everyone who is on this journey.xxx

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2013

    Reggata2 ... thank you for sharing ... another encouraging word on Xeloda!  Yea!  Are you on the 14/7 or 7/7 cycle?  Thanks again ...

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2013

    Reggata2 ... may I ask why you are coming off Xeloda after this round?  What tx are you moving to next?  Thanks ... 

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2013

    Reggata2, I agree with SyrMom. Why are you coming off the Xeloda. I thought we stayed on it until it stopped working or until we cant tolerate it???

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited May 2013

    SyrMom......I am on 14/7, 2000 am & 1500 pm....I think dosage is based on height & weight, I'm 63 kg & 168 cm.

    Very few side effects, a bit of redness in my hand & the usual stomach issues.

    Nothing unbearable although I do get tired. It's so convenient having a pill rather than the dreaded trip to the hospital for,transfusions, plus I was able to go overseas for 4 weeks :)

    I too thought we stayed on it til it stopped working!!



    Karen x

  • tammie
    tammie Member Posts: 13
    edited May 2013

    Well good to know I'm not alone with the brown spots.. I too will be coming off after round 6 my original cancer was Er + my onc only treats when things are bad seems it goes beat it back with chemo when aggressive then back in anti hormonals.. We are definitely blesses overall with xeloda been easiest yet hope scans show great progress next month.. Hugs to all and hope xeloda satays affective n easy for you

  • LauraOntario
    LauraOntario Member Posts: 60
    edited June 2013

    Sorry to whine, but I've had stomach aches, diarrhea, swelling of my feet and legs, mouth sores, fatigue, and now a fierce rash on my legs below my knees.  I was wondering if anyone else had experienced this rash in places where other people can see it.  Thanks for any help.

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

    I had the rash all over my legs and arms.  I found that benadryl gel helped the most with the itching. NOt so say the itching went away, but it was tolerable. The good news is that I started Xeloda in December so have had 8 cyles of Xeloda I think.  I have only had the rash for 2 of them. I hope for your sake that the rash goes away after this cycle and doesn't come back.  I have also been told it is a good thing to get the rash, as it means the medicine is working.  who knows. I chose to think positively.  Try whaever anti itch things you can find over the counter. You will find that one works better for you than the others.  

    I hope your rash goes away once your cycle is done.

  • LauraOntario
    LauraOntario Member Posts: 60
    edited June 2013

    Thanks Leftfoot,

    Good to hear from someone who has had to deal with it.  Some days I almost forget I have cancer.  I look at someone with a bad cold or something like that and think, "Oh, that must feel awful."  Then I have a day like today and I remember what I'm dealing with.  Oh well, best to concentrate on the good days.  Thanks again.

  • TXGigi
    TXGigi Member Posts: 39
    edited June 2013

    In answer to your questions I really don't know how long I was on Xeloda before it showed results.  All I remember is my tumor markers were over 3,000 and taxol brought them down to 11.  Had to go off taxol because of neuropathy and then was put on Xeloda.

    My mets are on my spine.  I am on 7/7 schedule, 1500 mils a day.  For a year it was reduced to 2,000 mils per day because of HF syndrome.  I am now back to 1500 mils a day.  My tumor markers are now plateauing whatever that means.  See onc in July and will get scanned probably.

    Hope this helps.  Good luck.

    Gigi

  • maggiethecat
    maggiethecat Member Posts: 9
    edited June 2013

    Stage IV, liver met, ER/PR- HERS+ 2x500mg twice a day, 14/7. initial treatment Taxol+ Herceptin in Dec 2011, it was not working, disease progression confirmed in Nov, 2012, treatment changed to Navelbine for 3 months, then started on Xeloda in Feb 2013

    I am currently on the off week but the fatigue is very severe, dark spot on my hands and feet, after 3 rounds of Xeloda, May /2013 CT scan report shows the liver lesions have shrinked, was previously 4.2 cm, now down to 3cm, all other ones have reduced in size as well ...... Hurray!

    Wishing all good result with the med, speak soon:)



  • OBXK
    OBXK Member Posts: 689
    edited June 2013

    I took a 5 mg valium last night and had a wonderful rest! It allowed me to have an enjoyable day out with a wonderful friend.

    I may ask for a script for Ritalin - for days that I really have to do things and am too tired.



  • tammie
    tammie Member Posts: 13
    edited June 2013

    I'm on my week off and must say for me that the weeks off are the worst.. The feet n hands are getting dry n almost wrinkled I'm hoping it holds of a bit longer as I'm hoping to get a full 6 months from this..

  • RangerMom
    RangerMom Member Posts: 205
    edited June 2013

    Hi All, Haven't been on here for a while. Reporting in that after 3 rounds of x, I have progression. We are doing 2 more rounds then scan again. I'm getting concerned since I have not been in remission yet and so far, nothing has stopped growth.  I am currently getting a second opinion from my sister's favorite breast surgeon and he thinks I need to go to a big cancer center with a clinical trial. He says its imperative that I get into remission soon or the chances of remission get harder the more the cancer grows.  He is trying to get me into Emory University Hospital here in GA while I'm visiting with my Sis. I've had progressions on ac/taxol, tamox, arimidex, faslodex and now xeloda.  I'm getting a little worried but still hopeful will find the right cocktail. I welcome your thoughts.... 

    Linda

  • stagefree
    stagefree Member Posts: 360
    edited June 2013

    my MO said no to Ritalin, explaining X too complicated a formula, not to risk it's effectiveness.

    starting cycle 5 tomorrow. lots of exema like scars on my face.. oh well. no dreaded HFS, but face syndrome I have.. anyone wih similar experience?

    ebru

  • SyrMom
    SyrMom Member Posts: 575
    edited June 2013

    Rangermom, so sorry to hear what you are going through.  I have no words of wisdom as I've been in similar situation.  Nothing has worked since a year ago and now I have liver mets, very scary.  Hang in there & pls. let us know how you are doing.

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

    stagefree- I am right there with you with the face thing.  It is terrible. My dermatologist gave me something for when it gets really bad but I find it doesn't really make a difference.  The thing that gets me is that one cycle I have a terrible face/scalp/back and the next no problems. I wish that I  knew that on days x- y I would have this problem or any other for that matter.  

    Hang in there.

  • stagefree
    stagefree Member Posts: 360
    edited June 2013

    thanx leftfootforward, I'll check it out with treatment MO next week before zometa infusion again. hope they suggest something useful, and let you know. So bothering indeed!

    hugs, Ebru

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