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All about Xeloda

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Comments

  • misszed
    misszed Member Posts: 18
    edited April 2014

    Hello!! Thanks for directing me here Kebab.  I'm on my first cycle of Xeloda (generic) and pretty nervous about all the SE's  Im so glad this forum is here for support, it sometimes feels pretty lonely in this cancer world.

    I started this on Monday April 21st and l feel like lm peeing aaaallll the time already!! I use coconut oil and udder cream on my feet and hands. I will be wearing gloves along with socks to bed starting tonight (thanks for the tips!)  I have my nausea and big D meds on standby.  So far so good and praying for minimal se's 

    @jjseven22 looks like you and l are on the same cyle...lm 7/7 currently...good luck to us :)

    Sending you all healing hugs and thanks for sharing.

    Susan

  • hansaim
    hansaim Member Posts: 68
    edited April 2014

    Welcome, Susan.  I am in the middle of cycle 8 and fatigue is the worst SE for me.  Wish you Xeloda does wonders for a long time with minimal SE. 

  • kebab
    kebab Member Posts: 98
    edited April 2014

    Welcome aboard, Susan. I'm glad you found your way here. Fingers crossed for minimal SEs for you!

  • Mompsych
    Mompsych Member Posts: 88
    edited April 2014

    Hi to all,

     Just had a PET scan and will find out results on Tuesday. The mind is going to dark places. Ugh.  In terms of HFS, prescription Urea cream is helping, as well as a combo of CeraVe, Working Hands, Gold Bond cream for eczema, and Eucerin.  Random slathering throughout the day.  If you put reparative nail polish on your nails, it is helpful.  Sally Hansen has a bunch of different kinds.  

    I've been on X since October. I'm just so f'ing tired.  Carolben - it's so hard fighting the depression...I'm too tired to do much of anything, but also get bored out of my mind.  I work only one day a week now.It's particularly  hard when I'm on an "on" week.  

    Welcome Susan - I know the paragraph above is not exactly happy-go-lucky, but compared to my previous tx (abraxane), its much much better. I hope your SEs are minimal and that X works a long time for you!

  • misszed
    misszed Member Posts: 18
    edited April 2014

    Thanks all....Momspych good luck, l will think positive thoughts for your results.

  • Kiakaha
    Kiakaha Member Posts: 12
    edited April 2014

    This is a great forum.  I've just finished my 2nd cycle of xeloda about to start my 3rd on Wednesday.  I'm 41, has anyone had chest pain while walking in the front and back upper chest area.....  its just when i exercise.  thanks for any input xxx

  • kebab
    kebab Member Posts: 98
    edited April 2014

    Mompsych -- still sending up vibes for good news for you tomorrow.

    Kiakaha -- Chest pain doesn't sound good. :(  I hope you can get some information about what is causing it and get it sorted out.

    I've been on my chemo break for almost 2 weeks now and my hands are still a mess. Still can't bend my knuckles or make a fist. I was hoping to get started on X again this week, but it's looking like at least another week off for me. I have to work hard keep the dark thoughts at bay, feeling like I'm leaving my body defenseless while I wait for my hands to heal. 

    I've been having low back/hip/leg pains for the last week. At first I was worried that it was my bone mets acting up again, but the pain moves constantly -- never in the same place from day to day. I'm starting to wonder if maybe it's a side effect of the X, after switching to the generic version for my last cycle. I hope that's it. I hope it's pretty much anything other than active mets, but a drug side effect would be easiest to deal with, mentally, for sure.

  • Mompsych
    Mompsych Member Posts: 88
    edited April 2014

    kebab- 

    Don't know what the pain is from - does it feel more neuropathic or achy?  It might be worth a call to your Onc's practice to see if it is typical.  I get achy in my pelvic area (where a lot of my mets are), but also have arthritis e en though I'm 54.  Those damn pains are scary though; lets hope it is just an SE!

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited April 2014

    Kebab - My mom started having low back pain a couple of weeks after starting Xeloda and still has them even though all of the other pains from the previous progression went away during that time and her blood has been good. It only hurts when she gets up from sitting or lying down and disappears within a few seconds of moving around. She's mentioning it to her onc this Wed. Also hoping it's a side effect!

  • saskie
    saskie Member Posts: 71
    edited April 2014

    Kiakaha - I was having chest pains a fair bit.  especially at night when I would lay down.  I find that the Xeloda causes a lot of heartburn and acid reflux. This gets bad enough to put pressure on your chest and throat.  I am on Raberprazole (pariot) for the stomach gas and it greatly helps.  But if the pains persist definitely get it checked out.

  • Kiakaha
    Kiakaha Member Posts: 12
    edited April 2014

    thanks everyone for you input.  turns out I'm very anaemic so blood transfusion on friday xxx

  • M360
    M360 Member Posts: 164
    edited April 2014

    Ladies,

    Haven't posted in awhile was in the hospital with the flu, and really low rbc.  Then I started back on round 8.  I have the same as most of you, no HFS, but lower back pain and being off for three weeks of no Xeloda I started worrying.  I've never had depression but I find myself in tears lately.   Symptoms Management was to check my thyroid for it was affected from the cancer and maybe medicine needs to change.  I too am tired all the time.  I have two daughters who take turns and are here 24/7 doing everything.  But I feel so bad with the tears lately.  End of May I have another PET to see if I'm still stable, cancer is still everywhere but last scan no growth or new places, only place left to go is my pancreas.  I started the generic Xeloda too, was told it just became available and most insurance companies prefer to go with less cost.  I have had reactions sometimes to generic not from the medication but the use of a different filler, but so far so good, only with generic I started getting mouth sores, have Magic Mouth was and another one to use and it helps.  I'm glad I checked in for I see that what I'm going through is what all you ladies are going through on Xeloda and I breathe a little easier.  Thanks.

  • Mompsych
    Mompsych Member Posts: 88
    edited April 2014

    got my PET scan results - no change from the last scan from about 5 months ago so that was a great relief!  Things seem to be relatively stable and I know I'm lucky, but I just feel so damn lousy.  I even feel guilty for writing it because I know how bad things are for so many others in Stage IV land.  Also looks like I might have some lymphadema.  WTF??? I had surgery over 10 years ago and only 3 nodes removed.  Anybody know anything about this? Is it possible that it could have something to do with the Xeloda? I will scour the Internet tomorrow...anyhoo very glad there are no new bone mets!  Thanks all -

    Marian

  • kebab
    kebab Member Posts: 98
    edited April 2014

    Mompsych -- Yay for stability!  Boo for the LE though. I have no experience with that one, but I'm sure you'll find lots of help here from others.

  • Mompsych
    Mompsych Member Posts: 88
    edited April 2014

    thanks kebab!

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2014

    Mompsych, I had no lymphodema for almost 6 years until I went onto X about 18 months ago. I came down with DVT one month after starting X, and then LE the following month. I am pretty sure that X has something to do with it, but hey, as long as it keeps the cancer under control, I will tolerate all the side effects that X throws at me ..lol...

  • Mompsych
    Mompsych Member Posts: 88
    edited May 2014

    thanks mandymoo - that is reassuring, yet yucky, if you know what I mean.  I had just 3 nodes taken out over 10 years ago and never had any issues with LE before. It was quite a shock to hear that from my Onc!  I also had a DVT scare, but it turned out to be a false alarm.  Did you do anything that helped the LE? I am spending lots of time with my hand raised up in the air hoping that some of the fluid will drain.  The things we do....

  • susan3
    susan3 Member Posts: 2,631
    edited May 2014

    when I was on xeloda my feet and hands needed lots of help. Thick peeling and felt like I was walking on chards of glass with every step. I got all kinds of uggs, Slippers that looked like keds,shoes, clogs, moccasin looking ones . Only thing I could walk in. I mean, went on an 8 day road trip with my friends to Yellowstone and just pooped out and couldn't walk the last day. The uggs r amazing for foot issues. The cream I used at night was Mary Kay emollient cream for your face, with socks. My feet felt so smooth in the morning. Then aquaphore during the day. Prep can be pretty intense. My bare hands never hit water , and I am a hairdresser. I also tapped the joints so they wouldn't dry out. I looked like Michael Jackson. All this worked for me. When I felt a fever blister coming on I put my feet in an ice bowl or put ice on them at night. Maybe a bag of frozen peas r better so u don't accidentally burn your feet with the cold. Even with all the se's that arose, there r still ways to feel better. Try them All out if you need to. Something these ladies here are posting will help if things get worse . Good luck sorry this was so long 

    And uggs go on bare feet

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2014

    mompsych, I have exercised my arms and hands, had lymphatic drainage massage weekly and did self massage as well but the effect was minimal. So after 8 weeks, I went to the Lynphodema clinic. It is a 2 hour drive each way. They treat it with laser therapy and massage.  The swelling has decreased more and on Monday, I will have my arm wrapped in mobi derma which is supposed to  drastically reduce the swelling, so I will wait and see. After that I will be fitted for a sleeve. 

    If you get benefit with arm exercises, that is great. Another tip is to take deep breaths as well as that gets the lymph moving as well.

    Warm hugs

    Mandy xx

  • Mompsych
    Mompsych Member Posts: 88
    edited May 2014

    thanks Mandy! So far mine is pretty mild so I will start with deep breaths and waving my arms around like a lunatic!

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited May 2014

    M360 - My mom has managed to avoid mouth sores so far and we think it has to do with a tip we got off one of the other boards when she started Xeloda. She wraps each pill in a tiny bit of marshmallow fluff so that the pills never actually touch her skin or esophagus. (Could be why she has also not had heartburn or GI issues either?) She hates the taste/texture of marshmallow fluff but it sure beats having mouth sores. A $2 jar from Wal-Mart lasts her months!

  • stagefree
    stagefree Member Posts: 360
    edited May 2014

    Cycle 20 over.. hang on everyone!

    hugs

    Ebru

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited May 2014

    Hang on is right. I think I just completed cycle 27 and am moving on to cycle 28.    I pray for good results for everyone. Tomorrow I find out the results of my CT scan on tuesday and my echo from last week.  My brain scan two weeks ago was great.  Hoping for the same result tomorrow.  

  • Mompsych
    Mompsych Member Posts: 88
    edited May 2014

    good luck leftfoot (like the user name!).  May we all hang in there....

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2014

    stage free and leftfoot, congratulations and best wishes for many more successful cycles worth xeloda. And I agree that we all hang in there. Xx

  • Carolben
    Carolben Member Posts: 265
    edited May 2014

    Thanks Kebab!  Had a good appointment with my shrink and he's adjusting my meds, it'll take a month to get off the one and onto the full dose of the other.  Meantime, I'm not giving in, trying not to look at the end of the &^%$ tunnel, but to see the light inside my tunnel.  To consciously focus on the half full part of that glass.  I know what you mean by crevices on your feet - one of mine did crack and it was sore!

    Woke up and tossed my cookies again, first thing in the morning, not the way to start the day.  Have been having more nausea this cycle, but this is the first time I threw up.  The fatigue has been bad the last 2 days.  I'm sure the fact that I'm not eating well (because of the nausea & Xeloda takes my appetite clean away) adds to the fatigue.

    Anyway, I need to get a life again, the last 2 years have been doctors, surgeries, chemo, rads, more doctors, more chemo, blood tests and the big event - the scans every 3 months.  My life has shrunk to all that.  So I've volunteered to work at a shop where the proceeds go to the Animal Welfare.  That'll be once a week - it's from 10h00 to 14h00, which are usually my best hours of the day.  And I'm looking for other places to do some voluntary work (not cancer related), there must be elderly people who need some shopping done, or to be read to, or just to visit.  I'd like to get involved with helping others with cancer, but have been advised not to, to get some other interests going rather.

    Hope we all will be blessed with a happy weekend 

  • hansaim
    hansaim Member Posts: 68
    edited May 2014

    I started cycle # 9 today.  So far the scans showed stability and some bones healing.  My hands and feet are not bad at all, but fatigue is really getting me down.  I am on the couch most of the day and conserve my energy for after school hours.  I have not lost any appetite!  I have been putting weight on, yuck!!!  Any tips on shedding the extra pounds?

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2014

    Hansalm, I had the same problems as you and I went to see a Nutritionist, Naturopath. She recommended a high protein (preferably not too much meat) diet and gave me many supplements, including vitamin B. She suggested I follow the alkaline diet as well, and  I also had to cut back on sugar and caffeine. I did notice some improvement. I have lost 5kg in the past 6 weeks, and I have some more energy.

    Unfortunately, I think that fatigue is unavoidable due to X, and I believe in listening to your body, just rest when you need to. 

    Warm hugs

    Mandy xx

  • Mompsych
    Mompsych Member Posts: 88
    edited May 2014

    Hi hansaim, I too I found X very fatiguing (as do many of us) especially as it continues. I have been taking it since October and I am so damn tired...I have been taking extra iron (and prunes!); which seems to have started to help.  Also eating too much junk.  Now that is getting warmer and it is t-shirt weather, I'm slightly motivativated to try to eat better.  Slightly....

  • Elisimo
    Elisimo Member Posts: 1,262
    edited May 2014

    Hi everyone,

    I am permanently off Zeloda!  The SEs were too bad and I was having symptoms of an allergic reaction that put me in the hospital for 4 days.  On to Abraxane starting next week.  Hope everyone of you has better luck and those awful SEs ease up for you.  Take care of yourselves and I'll keep praying for everyone of you.

    Joy and blessings, 

    AJ

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