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All about Xeloda

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Comments

  • Vickiss
    Vickiss Member Posts: 2
    edited February 2013

    I'd like to see some more recent posts about X, specifically about dosing adjustments. My MO switched me to 7/7 and reduced my doses of both X and Tykerb. It helped with everything except fatigue and nasal drip. Now I start dosing up and am anxious about SE b/c of how sick the full doses of both
    Made me, I'm taking 4 Tykerb/day and 4 X (2, 2 times per day) currently.

    I had the leg bone pain as well. I take Lortab when it happens, mostly at night.



  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    What do you mean by dosing up? Is your Dr adjusting it up? The X or the Tykerb? Not on this combo but others are and maybe they can help.

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

    My current dosage is 5 tykerb in the after noon (lunch time on empty stomach) and 7 Xeloda/day ( 4 in am when I get up, 3 after dinner). I think this is the max dosage.  

    Saw my MO and she said that as long as things like Benadryl, aveno oatmeal baths, tea tree oil etc help that I am to stay on this dose.  My first repeat scans since I started treatment for both my brain and liver will be the week of Feb 10th.  

    it is nice to see that other people have the same problems as me.  Sorry that any of us have to deal with this. SE suck but are better than the alternative.

    I have found no relief from the fatigue. Actually took today off of Xeloda; was supposed to restart my 14 on 7 off regimen but was too tired to do so.  I slept until 1 pm today.  Wish the fatigue could get better.  Of course, chasing 4 kids under 10 doesn't help.

    Best wishes to you all

  • braids3
    braids3 Member Posts: 131
    edited February 2013

    i  am on tykerb and x as well have been on x for 8 months and ty for 4. i take 2 x am and pm7/7and 4 tykerb before bed.i have found blue goo get at walmart good for the hand and foot. in the summer my h/f gets worse and i use henna paste works wonders.my biggest se is big D when i'm just on tykeb thing i've found for this is grated beets and lemon juice. i drink my veggies and do no fried foods.my wbc and neus are down right now probably from radiation in dec so i hold up in my dome scared to go out and get the flu. fatigue is intermittent and when i have it i have to remind myself i'm still on chemo and its part of it ahh. my typing sucks hope this helps someone

    love you all blessings and peace chris

  • Stefanie
    Stefanie Member Posts: 10
    edited February 2013

    Hi Ladies, I am ending my first 2 weeks of Xeloda this Monday and I started Tykerb on Friday. THe Tykerb is kicking my butt. I have been extremely fatigued, my right leg hurts, diarrhea and I feel nauseated this morning. Since I have been taking the Xeloda for almost 2 weeks, I know it has to be Tykerb. Oh boy , I am not liking it at all. My skin has been very dry and itchy as well. Have any of you gotten any results from scans yet if that combo is working?

    Lots of Hugs!

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

    Stefanie-

    Hang in there. I find that my week when I don't take both Xeloda and Tykerb my Diarrhea goes away.  I get my first scan on Feb 12 and am holding out hope.  I have been trying various things for my skin.  The benadryl gel works well on my itchy legs and arms.  I totally get the fatigue thing.  I did find that I found some solutions to the SE during my second course of being on both drugs. It is a lot of trial and error.  Tea tree oil on the finger nail beds is helpful.  

    Good luck.

  • chele
    chele Member Posts: 132
    edited February 2013

    Ugh. Now my fingers are peeling. Feet are itching, wondering if they will peel next.

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    My fingerprints are non existent and the skin is smooth and tight. If i dont constantly moisturize they crack and hurt at the joints but my palms havent peeled. Small consolation. Initially on a high dose my feet burned and peeled and the reduction seems to have taken care of that.



    Keep moisturizing and hopefully they won't peel.

  • dormouse72
    dormouse72 Member Posts: 21
    edited February 2013

    Hi Chickadee

    I know you have spoken about non-existant fingerprints.  I have the same thing - and to sign in to work I have to do a fingerscan, so having no fingerprints is hell on my timekeeper.  I've found that cooling my hands down by touching something cool (not cold) helps bring my fingerprints back.  For me, it's the cool metal bannister right by my time-clock.  It also helps.to do things like grip jars.  At home, I keep a cold pack in my fridge and when I need to, I just wrap it in a dish cloth and hold it for a minute or two. But I have no pain or peeling on my hands or feet - just some mottling of the skin color on my palms and soles of my feet and fingerprints which come and go.

    I don't comment much because my SE are not as bad as everyone else's here but I do lurk every day to see how everyone is.  Hope we all have awesome scans!

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    That's really interesting that cooling your fingertips raises the print. How did you discover that?



  • chele
    chele Member Posts: 132
    edited February 2013

    So far my feet just feel weird, like I'm walking on huge callouses with blisters underneath.  My first two fingers and thumb on each hand have peeled down to the first knuckle.  They peeled as one entire piece for the most part.  ick.  Not really in pain, just uncomfortable.  I'm wearing gloves (thankfully my co-workers can laugh at my Mini Mouse look) and bummed a little syringe from the Director of Nurses (I work in a small hospital).  I used the syringe to inject Gold Bond Foot Creme (high Urea content) creme under the gloves on my fingertips.  Genius I tell ya.  Amazingly I'm able to type fairly well with the gloves!  Tomorrow I get my TM test back, see if I even have to take Xeloda any more.  If I do I'm going to ask to reduce the dosage a bit, see if that helps.

  • saskie
    saskie Member Posts: 71
    edited February 2013

    Chele - I love the idea of injecting lotion into the gloves - may have to try that one.   Hope your TM's are good.  I get my results in a week or so - hoping for positive results too.  I also have non existant fingerprints- fingers keep cracking and peeling on the tips.  Love being able to talk and share with you ladies!!

  • Hope4590
    Hope4590 Member Posts: 1
    edited February 2013

    Hi Lynn 1

    I have Stage IV Metastatic Breast Cancer. I am currently taking Zeloda. My Onc started me with 4000 mg but later had to decrease the dosage to 3000 mg because it was so strong. I've been on Zeloda for 5 months now ( one week / one week off). My experience with Zeloda has been very brutal to both my hands and feet. They are constantly cracking. At the beginning of the treatment, I had developed sores from the cracking of my skin on the side of my fingers, constantly peeling skin, red and sensitive hands and feet, my heels are always sore, I've lost 3 toe nails, I'm wrapping my toes with gauze everyday because my toes have sores from the cracking of my skin as well, and I not longer have finger prints due to the peeling. I use very strong "Udder" on my hands and feet alone with "Aquaphor by Eucerin." I also use Bag Balm for my hands and feet. My Onc prescribed Keflex for the sores on my hands and feet. I have to wear rubber gloves when I cook. I can't twist tops off of anything. I have to put leather gloves on first or ask a family member for help. I also got a temporary Handicap placard so I wouldn't have to walk so far. My mouth is also sore! :(



    Lynn, I hope I have provided enough helpful information to address your needs. The Bag Balm and Udder really helps. Xeloda affects everyone differently. My problem is the "Hands and Feet Syndrome. Good luck...Hope

  • dormouse72
    dormouse72 Member Posts: 21
    edited February 2013

    I found it totally by accident - the stairwell where my time-clock is generally feels.cool (at the best of times. Other times it's freezing). So as I was leaving one day, I had my hand without my glove on resting on the bannister.  And - lo and behold - my fingerprint took!  After two weeks of being rejected because my image was too low, there was a 60% match.  I've been doing it consistently now and it works. But again, even at 1500 2x per day my HFS is not that bad. 

    For ladies with mouth sores, Colgate has a mouth wash (no alcohol) which is specifically "designed" for mouth sores.  I couldn't find Biotene and so took that as an alternate.  It worked really well and was less expensive than the Biotene.

  • LadyFarmer
    LadyFarmer Member Posts: 5
    edited February 2013

    And I have just woke up with a red rash on my butt! Embarassed  I too am on Xeloda but not on Tykerb...

    It is not itchy, more of a sore feeling, but nothing I can't handle, but nowhere else so far!  Hopefully like everyone else says, it won't last long and will be gone!

    Good luck with your rash!  Keep smiling! Wink

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited February 2013

    Hi Ladies,

    Just found out today that I'm coming back on Xeloda because my CEA went up.  My onc is hoping that adding it to the Navelbine that I'm currently on will work.  Can't say I'm thrilled.  It was not nice to me the first time around.  In fact, my right had is still cracked and peeling a bit and it's been 3 months.  I need to go back and read my posts to see exactly what my side effects were.  I remember off the top of my head: bloating, reflux, hand and foot syndrome, and fatigue.  Sigh.

  • chele
    chele Member Posts: 132
    edited February 2013

    Saskie, no TM results!  The lab tech messed up so I had to re-do them.  Maybe find out Monday.  I feel badly for the poor guy, he knows how I look forward to getting the results.  No biggie, it's not like he did it on purpose.  I hope your results are good too!

    LadyFarmer, I have a rash too.  Not on my butt though! LOL  Mine is across my chest, on my shoulders and spots on my arms.  Amazing how fast a bump just pops up from nowhere.  Almost like a zit but with a bit of itch.  Weird.

    My face is soooooooooo itchy.  I've had to take Benedryl.  I swear, this stuff is quite the adventure.  It's like the SE's just swell, then ebb, then swell with a vengence.  Not sure if I'm hoping it works or not.  This is the first chemo I have just hated.

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    If its any consolation the SE's did settle down the longer I've been on it. Then again I didn't experience the allergic kind of SE's like rashes and miserable itches. Knock on wood and crossing all my fingers and toes I don't.

  • LadyFarmer
    LadyFarmer Member Posts: 5
    edited February 2013

    Well the rash on my butt isn't any worse thankfully ladies!  lol! 

    But my pain doc that I went to see yesterday was more than a little concerned since it is 5" x 5" and is very dark red and inflamed -- he figures a skin infection -- some sort of a bug got in there and so he stopped my Xeloda immediately and booked me in with an extra appt with my oncologist on Tuesday.  He will decide what to do about restarting the Xeloda or not when I see him on Tuesday...  He took blood tests to see how far down my blood might be.  And he started me on antibiotics right away.

    So it could be a side effect of the Xeloda...this is my 4th cycle, and we had just increased the dosage to full strength, or it could be coincidence and have nothing to do with the Xeloda. 

    I am thankful that there is no itch associated with this BIG Rash...because I sure would have lots of area to scratch!  Wink 

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    Glad you are getting to the "bottom" of it.



    Ok, seriously that sounds a bit scary but glad your team is on it.

  • Swannay
    Swannay Member Posts: 50
    edited February 2013

    Hi all,

    I developed a redness next to nail on toe. After about a week, I went to dr and was put on antibiotic. It did not get better and was put on 2nd one. It didn't work. They cultured it and it came back staphylococcus haemalyticus. I read it can be resistant to antibiotics. I am on my third one. Can't discuss this with dr until mon. Has anyone had this? I'm a little scared.



    Thanks

    Swannay

  • LadyFarmer
    LadyFarmer Member Posts: 5
    edited February 2013

    Hi Swannay,

    Hope you got to the dr today and got some answers on your toe.

    Sounds like you got your 3rd antibiotic after they did the culture and knew what they were dealing with, so I am hoping the antibiotic has helped some by now?  Just takes a few days to get in there and get the infection under control perhaps? 

    I have also have a big toe that gets red and sore every so often, and being on Capecitabine, I have to be careful. 

    Good luck with your toe and let us know how you made out at the doctor's appt.  Try not to be scared.  I know it's not easy...we are all that way...with what we are dealing with...try to keep smiling...Wink

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   

  • dormouse72
    dormouse72 Member Posts: 21
    edited February 2013

    Morning ladies!

    So I am still an X diva.  Went to onc yesterday and had HUGE anxiety (not sure why - I had a stomach bug which made me miss my scheduled scans on 2/1. But my onc had said she wanted to "keep an eye" on my lump which had me freaking out since early January). She said "I cant tell if it's bigger or not" but measured it and said "Nope - stable".  She doesn't talk about TM because mine are generally not a good indicator (they were low when I started treatment initially but did go down to "normal" when treatment started).  She just said "Well, we'll see what the next scans show" and scheduled them for late March.  That made me feel way less anxious because she is very pro-active and if she was really concerned, she'd have scheduled them sooner - which is what I was expecting. But they did draw blood again when I was hooked up for my Herceptin so she is definitely tracking my TM's.  They normally don't take blood every time.

    You'll all have to talk me off the ledge in March - I love the convenience of X and it's been really gentle with me.  I'm terrified of moving on, even though I know it will have to happen one day and it will never be at a good time.  But tomorrow we leave for Disney and I was so afraid of getting bad news right before my trip and having to wrap my head around it while being with my girls 24/7. At least I can float down the great river of "De-nile" in my Happy Place for just a bit longer.

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    So very very happy for you Dormouse!!! Have great fun with the other mouse and his Mousekateers.

  • Swannay
    Swannay Member Posts: 50
    edited February 2013

    I did see my dr. about toe. It seems to be getting better but he took me off xeloda for the next two weeks. A little scary. Will have to find something to keep my cuticles from getting red. I use different lotions. Bag balm doesn't work on it. Anyone have any suggestions? I so appreciate being able to come here for help.



    Thanks

  • RobinNY
    RobinNY Member Posts: 136
    edited February 2013

    Hi X girls.....



    As I suspected, the Onc took me off Xeloda today and I will be starting Navelbine on Monday. Best of luck to all of you with continued success with X.. God Bless and a hug to everyone.



    Robin

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

    good luck Robin.

  • saskie
    saskie Member Posts: 71
    edited February 2013

    Good luck on the Navelbine Robin!!

  • RobinNY
    RobinNY Member Posts: 136
    edited February 2013

    Thank you Saskie and Leftfoot....very much appreciated.  I hope X treats you kindly with wonderful results for a very, very long time

    Hugs! 

    Robin

  • chele
    chele Member Posts: 132
    edited February 2013

    Navelbine was very good to me Robin. I hope it is for you too!