Switching to Xeloda

After reading about all of you being on Xeloda instead of the three day infusion of 5-FU, I asked my dr why she chose what she chose.  She indicated it is so she can have a better watch on patients she is more concerned about since it is an every other week treatment.  She offered me to try the xeloda since they were already thinking about giving me a break because I have gone 16 treatments without one and my mental state is starting to pay the price.  I don't have free time at all with that schedule so I am just plain worn down.

So now the question, I know everyone is different, but I want to have an idea of what to expect as posibilities on the SE front.  I know about hand-foot and that one does have me worried.  But how about the fatigue?  For me on the 5-FU the day and/or two after the pump comes off is the worst.  But with a two week pill taking, when is everyone's "down" time?  Or is it stretched out over time.  I handle 5-FU well except for the fatigue (no nausea, no diarrehea, etc.) so I am hoping the same with the Xeloda. 

Just looking to see what to expect and of course any tricks to deal with them.  We all have tricks right?  :)

 

This is such good news for me though.   I am optimistic this will give me a better quality of life!

Comments

  • Travis8
    Travis8 Member Posts: 22
    I just started Xeloda today.4

    I just started Xeloda today.4 in the morning and 4 in the evening. Haven't got nauseated really just that icky feeling. I made sure to take my meds and that was controlled. kinda fatigued also but not bad. Again it's just my first day so I'll keep you posted and we'll go through it together.

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    Travis8 said:

    I just started Xeloda today.4

    I just started Xeloda today.4 in the morning and 4 in the evening. Haven't got nauseated really just that icky feeling. I made sure to take my meds and that was controlled. kinda fatigued also but not bad. Again it's just my first day so I'll keep you posted and we'll go through it together.

    Thanks.  I know my pattern

    Thanks.  I know my pattern when I was on the IV FOLFIRI but I am trying to figure out how to plan through my first treatment.  I am a single mom so I like to plan meals around when I know I won't feel up to cooking.  I know it varies.  But I am hoping the fatigue will be the same just streched amongst more days so it won't be as hard hitting.  Each person is different right? 

    I have always lucked out on the nausea (knock on wood) and only had major heart burn, I am really hoping that holds true! 

    Thanks for any "hints" you can offer.  I hav 3 more weeks till I start. 

  • Joan M
    Joan M Member Posts: 409 Member
    Xeloda is much better than the pump!

    I have been on Xeloda since last summer.  It is much easier on the body than the pump.  I was having problems with the 5FU (mouth sores, and other issues).

    The worst problem with Xeloda was heartburn and that improved over time.  I avoid foods that upset my stomach, just remember to take the medicine after a meal and not too  close to bedtime. I have problems with heartburn if I lay down or even sitting in a recliner within an hour of taking the evening does.    I still get tired from the Xeloda, but not as much as with 5FU.  Also remember to use good lotion because it will cause dry skin and nails - especially on your feet and hands. 

    You can message me if you have any questions. 

    Good luck! 

    Joan

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    edited February 2017 #5
    Joan M said:

    Xeloda is much better than the pump!

    I have been on Xeloda since last summer.  It is much easier on the body than the pump.  I was having problems with the 5FU (mouth sores, and other issues).

    The worst problem with Xeloda was heartburn and that improved over time.  I avoid foods that upset my stomach, just remember to take the medicine after a meal and not too  close to bedtime. I have problems with heartburn if I lay down or even sitting in a recliner within an hour of taking the evening does.    I still get tired from the Xeloda, but not as much as with 5FU.  Also remember to use good lotion because it will cause dry skin and nails - especially on your feet and hands. 

    You can message me if you have any questions. 

    Good luck! 

    Joan

    Thanks.  That is what I

    Thanks.  That is what I needed to know.  I work full time so trying to juggle the fatigue when the amount is unknown is tough.  I schedule my work load around the days that I feel the worst.  I am optimistic about this switch.  The pump was tough on moral for 5 days and I want that time back.  I don't want 1/3 of my life to be miserable and I am hoping the new meds will make quality of life better. 

    THanks for the suggestions.  I will get some.  my nails are already chipping from the 5FU so I hope they don't get worse.  They are pretty miserable as they are right now.  Maybe I will just switch to fake nails... I hate to do that though. 

  • Trubrit
    Trubrit Member Posts: 5,804 Member

    Thanks.  That is what I

    Thanks.  That is what I needed to know.  I work full time so trying to juggle the fatigue when the amount is unknown is tough.  I schedule my work load around the days that I feel the worst.  I am optimistic about this switch.  The pump was tough on moral for 5 days and I want that time back.  I don't want 1/3 of my life to be miserable and I am hoping the new meds will make quality of life better. 

    THanks for the suggestions.  I will get some.  my nails are already chipping from the 5FU so I hope they don't get worse.  They are pretty miserable as they are right now.  Maybe I will just switch to fake nails... I hate to do that though. 

    Glue

    Be careful with fake nails. The glue used to stick them have chemicals in them. I would personally (which means you do what you want) stay clear of any chemicals, even tiny amounts, while on chemo. 

    TRU

  • wszimmerman
    wszimmerman Member Posts: 4
    edited March 2017 #7
    My husband had a terrible

    My husband had a terrible reaction to Xeloda.  Constant diarrhea on his off week, (15 times a day and all through the night.)  He lost almost 30 pounds since Christmas.   Most people do not have this reaction, but you need to be aware that it can happen.

    We switched to 5fu two weeks ago.   

  • beenbetter
    beenbetter Member Posts: 14
    zeloda reaction

    tried the zeloda pills...had terrible hand feet reaction with just first try/ was hopefull it would keep me from the pump, but no luck.just on 3000mg/day, so now back to the pump 5fu and avastin; but I am 70 so maybe my reaction was due to age....also my eyelashes falling out? from the avastin ??? any one have eye problems?

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited March 2017 #9

    zeloda reaction

    tried the zeloda pills...had terrible hand feet reaction with just first try/ was hopefull it would keep me from the pump, but no luck.just on 3000mg/day, so now back to the pump 5fu and avastin; but I am 70 so maybe my reaction was due to age....also my eyelashes falling out? from the avastin ??? any one have eye problems?

    From top to bottom (literally)

    Yes, I had eye problems. Dry eyes. No eyelashes. Weeping eyes. Lost my peripheral vision..... and the list goes on. 

    Welcome to the forum. 

    TRU

  • BrianChristopher
    BrianChristopher Member Posts: 23
    Still rolling with Xeloda 2nd round

    I am in the middle of my second round of Xeloda, first two weeks I took 4 500mg tabs in the AM and then again in the PM, my feet had alot of neuropathy, felt like I was walking with sand in my shoes, had nausea, and hand sensitivity to cold.  I was tired alot the first ten days.  On the third week I take a break for one week and then I go for the Oxaliplatin infusion and start my two weeks of Xeloda.  However this time around my Doc said to lower the Xeloda to eleviate the feet, it worked but still very tired and nauseous, I take COMPAZINE for nausea but it makes me tired(hard to work) but it is somewhat effective. I have heards symptoms are culmative and so it worries me that if I feel this way now what will the next 20 weeks bring. I learning to take each day as it comes and be thankful for the good days. Anyway I hope all you wonderful people continue to heal and thank you for your support and advice.  Brian

     

  • Joan M
    Joan M Member Posts: 409 Member
    I have been on Xeloda since

    I have been on Xeloda since July 2016 - 9 months now.  I find that my stomach problems and tiredness have improved over time.  Apparently some people get used to it and have fewer problems after they have been on it.  My doctor said if you are going to have problems with Xeloda it happens right away. 

    I had stomach pain and tiredness, I used Omeprazole and nausea meds every day at first to avoid getting sick from it, but then found that I dont always need it.  I only use it as needed now to reduce side effects from those meds - especially constipation.

    After awhile I got dry, peeling skin on my feet.  I use a good moisture cream and then layer of either coconut or mango oil over that to help seal it in.  The coconut oil is less greasy so is easy to use during the day.  The mango oil smells wonderful and seems to be more moisturizing.  Th rest of my skin is drier, but a regular body lotion helps.    

    My eyes have been drier and I use eyedrops daily. I may start on an a prescription drop for dry eyes that has a steroid in it.  Also noticed my eyelashes arent as full.  My eyes bother me more, but I thought it was because I have been on computer and phone screen too much without my glasses ( I have blue blocker lenses).  My prescription hasn't changed so no clinically significant vision changes yet.   

    I would really like to hear from others that have been on Xeloda long term.  Please post your experiences!

    Feel free to contact me if you have any questions about my experiences with xeloda.  

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Xeloda since Jan 2014

    I've been on Xeloda since Jan 2014. After very many years on Irinotecan and Erbitux it was almost like not being on chemo for me. I had some issues with diarrhea, but like I've done with most treatments I've been on, I take 1 Imodium when I took the Xeloda and it kept things in check. I started with 2250 mg/2 x daily for 7 days, then 7 days off. After about 9 months(?) my hands and feet were really burning up so they lowered the dose to 2000mg. I still get some pain (at times) from the hand cracks so I'll use Bag Balm which helps sooth them. My feet stopped burning and I'm on a regular schedule with a podiatrist who keeps my toenails under control.

    After about 1 year they threw Avastin into the mix due to some questionable abdominal activity and that seems to have taken care of that. This entire Xeloda cycle seems to have kept my two remaining lung tumors stable.