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All about Xeloda

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Comments

  • lilylady
    lilylady Member Posts: 478
    edited February 2012

     I picked up my first Tykerb and Xeloda today. 5 Tykerb in the morning. 4/am 4/pm with the Xeloda-14 on/7 off. I have my creams and gloves. Biggest problem is I walk 2-3 miles a day while I work and use tools to do my job-hoping to avoid the hand/foot because I need to stay working.

      Nervous as heck to try this new stuff while at work. I may delay it til saturday when I am off-how much can it grow in 3 days anyway??. Also getting Shingles Vac on Friday-I saw where we are to avoid vacines while on this. I have been waiting for a chance to get this shingles thing for almost a year. I do not want to put it off.

      I saw the new tips thread. I had read this whole thread and took notes already. good to see it all gather together.

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    K-Lo, We also post here to kinda whine about se's or let the gals know when its working or not... do you want us to use the new thread for all that as well? Basically take this thread in general over to the other because it has all the information at the top. Which is incredible for you to have done!

    Thanks & Hugs Suz

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    well, no Suz, i thought the other could just be a post-it reference.  whatever works.   

    Yo, my MO has slowly come around to changing my chemo since i developed back, braina dneye mets on X... hmmm

    so, i shall be an ex-diva next week too!

  • singletona80
    singletona80 Member Posts: 44
    edited February 2012

    My dr said the ct scan results show improvement with my lung mets, I'm happy! I will have another scan in about two months just to make sure the tx is still working.



    I have a question, just thght about it.... what happens after I complete this cycle? Will I move on to another chemo?? Is it typical that you stay on a chemo tx until/ if you get NED??? I'm assuming bring stable means the cancer isn't growing or spreading but you are still on dome form of chemo?



    I should've asked my dr these question at my appt today but they just popped into my head right now.

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    K-Lo Thanks, I will continue to use this one to talk then, you are an angel getting all that data organized & posted {{{hugs}}}. Oh Hun, Im really sorry to here about the progression! Do you know what the next line of attack is? Umm Once a diva..... Will be thinking of you as you move on to the next phase. Hoping it kicks cancers @$$!

    Singletona, From what Ive read here they keep you on X as long as its working and the se's are tolerable. They may change the dose or type of cycle but I think thats it.

    Hugs Suz

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Will bring this qustion back here..

    Was wondering if anyone has gotten brown spots on the hands & feet? I have a few on the bottom of my feet and now have about three light ones on the tips of my thumbs. They almost look like freckles or beauty marks that we get on the body.. well at least I have them. These spots on the fingers & feet were not there before I started X. They are on the areas that are fairly Irritated like the tips of the thumbs.

    Havent read this anywhere yet but am thinking they might be burn spots where the drug has gone..

    Thanks :) Hugs Suz

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited February 2012

    Hello X Divas!

    With my medication ordeal behind me, I finally had a long visit with the onc.  Despite all the lack of my brain cells functionality, I continued to do something right...so the results are in:

    Oddly, not bad.  The mets is still there, popping up in spots and disappearing in spots and it is always just tiny things - here on one scan, gone the next but still there.  I still have no sizable turmors (good thing) but many tiny ones that are now pretty much all through my spine.  There  is a fracture (not surprising with me falling over like a dead tree all the time) and a permanent deformity in my S1-L5 and L4 region (this is from the disc degeneration which was going to happen some day anyway).  Overall the scan results from Monday - "Significant improvement from the scans of 10-11-11".  I'll take it...it isn't quite stable but seems to be on the way as TM's are still dropping - I will remain on the same the treatment with a slight adjustment - Avastin every two weeks and the Xgeva and Aranesep (for hemoglobin stability) with every other Avastin infusion.  I continue on the Xeloda at home with 7 days on and 7 off.  Medication is reduced to Xanax and Effexsor for depression and anxiety (same dosages) and Percocets for pain.  Supplements include Vitamin D, calcium, magnesium, zinc, cranberry and fish oil.  An occasional Senakot if stools are difficult.  I don't have the loose bowels from the Xeloda.  Lots and lots and lots of foot lotions and hand lotions - I vary the ones for the feet and I generally use Burt's Bees hand repair (a little pricey but worth it - haven't needed gloves so far).  I have a variety of foot stuff and each addresses the various parts of the foot issues - I have found that no one lotion does it all in addressing the thickening, the blistering, the dryness, and the cracking so I mix them up to cover all the aspects and so far, so good - only on little spot on the toe I broke (duh) that has a patch of scalely skin. 

    My nails feel funny and I am waiting for the lifting but I did find someplace that it is actually bacteria that gets under the sides of the nails when the skin starts to thickening that causes the total loss of the nail sooooo...an alcohol swab around the entire sides and cutical area of each nail on the hands and feet twice daily (morning and night) will kill off the bacteria and although drying, when followed with the moisturizers on afterward, so far, no lost nails.  I also polish them - changing about every three to four days so I don't end up sealing in any bacteria.  I discussed this with my onc and he confirmed it is a good prevention.  Still feel like I am walking on pillows and the tips of all my fingers are numb.  I can deal as long as it does not get any worse - after being on the X since October, I should have experienced the extent of the SE's I am going to have so this should be managable and allow a quality of life (now without the drugs...LOL) that will be quite tolerable.  Yippee!

    Love you all so such and thank the Lord for his angels that are constantly working in our lives...

    X Diva Low Rider

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    K-Lo - so sorry to hear about your progression. Fingers and everything else crossed that the next tx will turn things right around for you. Do you know yet what you are changing to?



    Singletona - Great to hear that Xeloda is working well for you. Long may that continue!! My understanding is that we stay on this for as long as it's working, with just adjustments to dose or cycle if needs be, as Suz says.

    Lowrider - I'm so happy to hear that things are back on track for you now and that X is keeping things in check. Yay!!!



    Suz - I haven't got any dark spots on my hands or feet, but I'm only half-way through my 2nd cycle. It does sound like you may be right and that it may be burned areas, especially if the spots tend to be in areas which are sensitive and sore. I hope you can get some relief for that very soon.



    In fact, I hope that all those with SEs can get them sorted soon. And on that note... I know that sore mouth can be a problem, but has anyone had problems just with their tongue?! Mine feels really sore and a bit swollen, like when you burn it on hot drinks/food, and the centre of it has turned really dark brown, almost black, and just seems to be getting darker by the day - really attractive! I've got an antiseptic mouthwash from the onc which I'm using twice a day and I'm eating and drinking lots of pineapple, but it's getting worse. Anybody else had this? Any suggestions about how to calm it down? Today is day 9 of cycle 2, 14 on/7 off. Thanks everyone! xx

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Lowrider - I'm so happy to hear that things are back on track for you now and that X is keeping things in check. Yay!!! xx

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Happy to hear a lot of positives.     i have so many spots, i assumed its sun damage coming out from those gorgeous dark tan days.

  • Treso
    Treso Member Posts: 68
    edited February 2012

    Lowrider:  So good to hear from you again.  I know I have been sporadic on the boards but have been off chemo for 2 1/2 months now but have been wondering how you were doing.  Yours were some of the first posts I read and enjoyed when I joined.

    K-Lo:  I'm sorry about your progression. X along with Taxotere worked well for me.  I hope your next treatment will do the trick.  Remember the days of baby oil and baking in the sun alllllllll day long?!

    Question for everyone/anyone!

    I finished 6 1/2 months of X and Taxotere in mid November.  Had all the typical s/e but plugged along managing them as they were not all at the same time.  I got a cold, fungal infections under my arms and swollen eyes in the beginning (the cold) and mid December (the rest).  I also started having joint pain (all joints) which has intensified so that it is excruitiating to get out of bed.  It gets better through the day with walking and daily activities (and percoset) but this is really bothering me.  My TMs in mid January were absolutely wonderful (CTC - 0, CA15.3 - 31, CEA - 3.1); they have continued to drop since May 2011 when I started chemo.  My scan at the end of June 2011 was excellent, liver lesion could not be detected, tumors on skeletal system were mostly gone except for three on my spine which were reduced by half.  September and December scans showed Stable which is wonderful.  I will have my next scan in March and then return to work (ugh!  my full time job which I love but not where I work - kitchen design at The Home Depot).  I have been working my part time job at home.  Oops, off topic.  My joint pain has me very concerned.  I just got the results of the Lyme tests done and they were negative.  I cried.  Not because I was happy but because it would have explained things.  Weird what this disease does to a gal, n'est pas?  So, has anyone else experienced this?  The only thing I am getting is Zometa every other month.  My onc said that the joint pain should not be a coninuation of any s/e after 2 1/2 months off.  Which leads me to my next question of you all.

    Who is Stable or NED but is on maintenance chemo, what kind and how often?  My onc doesn't want me on any chemo until I need it because of the toxicity.  I understand but really don't like being out there with nothing.  He feels that I am doing very well and am being monitored closely so I am not really out there with nothing.  I trust him implicitly and respect his abilities (that's not really the word I wanted but I suffer from word-finding-problem).  He studied under Larry Norton at Sloan.  He is very good but......I always question (which he just loves about me).  We actually get along very well and I feel that I am a part of my care team.

    I am going to post this in a couple other threads so, if you see my questions, ignore them.  I just want to get my questions out to a lot of you guys.  You are all spectacular!

    Thanks so much, Theresa

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Lol K-Lo .Yes I have a ton of those too & a lot of summer freckles. We wont talk about how I spent most of last summer in a bikini on my back deck, on the boat or by a pool on a summer vacation. Old habits die hard.  But the new spots are in areas that you dont normally get them. The pads of my feet where the skin is irritated & dry, and the tips of my thumbs where I get the worst of the burning/numbness & sensitivity.

    Im on day 2 off X and felt pretty good this morning. Then had my nurse comes in to drain the pleura. Ouch! I had a build up of Cavalon & it was all peeling & icky. So I got the "big sterilized scrub" not even remotely fun & it hurts like hell now. Also forgot to take my pain pills beforehand so it was that much worse. Thing Im gonna be a veggie with pillows & blankets on my Lazy-boy couch (laptop too) Ive been ordered to rest for 3-4 hours and Im gonna do just that!

    On the pleura fluid... it was getting less & less through tx but Ive just noticed that since I went on the 7on 7off its been slowly increasing in volume each week ei: 280mils 320mils 450mils then 550mils today. Makes me wonder if the Xeloda isnt working as well as it was on the 14/7. I hate the thought of that but will have to see if i can get a CT scan after my next visit wed. Not sure if they will allow me another scan so soon?? Hate the unknown of this all.. sigh.

    Angelfalls, I haven't had any mouth issues so far but Im a Listerine addict. Find its the only thing that takes the yucky metallic taste out of my mouth... I did notice that my tongue looked discolored the other day but haven't looked at it since. Will check later when I stop sulking on the couch. ps. just looked and yes I have large brown areas on my tonge, tried a peroxide then listerine scub on it. Its lighter but still fuzzy looking & lighter brown.

    Lowrider so good to here that your flirting with the stable boy. Might have to go all the way next time ;o} Ive been using iodine on my big toenails for a few months.. Alcohol would definately be a lot cleaner looking. Its odd that my fingernails have never been healthier. I can barely keep up with filing or trimming them these days. The skin just under them is red & the thumbs are looking rough, but overall they are growing like weeds. Up until a few weeks ago I was getting regular mani/pedi's done. Love the look of colorfull toenails even if im the only one seeing them in winter. But I removed all the polish a few weeks ago so I could better monitor my toe nails & the oxygen thingy that they attach to my finger doesnt register when I have fingernail polish on. I started with just removing it from one finger each week then re-applying it when they left. But gave up & took it all off... hmmm maybe a spa day is in order to lift my spirits up.. massage sounds really good too.

    Okay Ive written a book again. I guess its become obvious i talk way too much. Seems i dont know how to do a short post. Oh and I now have the issue of the letters on my laptop keyboard starting to wear off... might be from long nails all the time. This could be a big problem because Im a two finger typist :) heh heh new laptop?

    Hugs Divas & thanks for letting me ramble. Suz xxx

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Suz you're a cutie keep writing your little booklets.

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Ha ha he, about relaxing for 3 hours.. right after I wrote that got the "standby call" from the hospital & took dh in in to have a brew shot into his spine to try to stop the nerve issues in the L4 area which have his leg spasming day & night. He had to have "someone who knew him" ......(me) drive him home. Its fantastic that he got it done as just prior to that I called the spine clinic then the hospital, was told he had a 4 month wait for it. I told them to put him on the cancellation list with a one hour call & we could both be there... hmmm they called about 2 hours later, Just enough time for my nurse to come & go. But in the end very happy he got it done (no more complaining) Innocent

    Back on topic, Am halfway through my week off and the burning has almost completely gone. Brown spots are still there. Also am still really tired though slept till noon again today... could be my nigh-time pills?? Oh well coffee time.

    ps. the almost missing keyboard letters are driving me nuts my E is now am F, my M am N and the L an I Spellchecker working overtime but I also have to proof read every thing gggrrrrrrrr

    Still dont get the screenshot Embarassed hope that doesn't get me shot

    Hugs Diva Darlings ;o) Suz

  • frankandfernsmom
    frankandfernsmom Member Posts: 4
    edited February 2012

    I am new to Xeloda.  I will start my first dose on Monday.  It seems that the most bothersome SE is the HFS.  Anyone have any other SE's?  Any mouth sores? What about hair loss?  I am just now growing some hair back from being off of Taxol since the end of November.  My onc said mostly thinning.  What is y'alls experience with this?  Also, how long can you stay on this treatment?  I'm hoping it will work for me.  I only got 6 weeks out of the Faslodex. Frown 

    Thanks for any info you can share with me.  I tried reading through this thread but 41 pages is quite a lot.

    Hugs,

    Linda

  • justjudie
    justjudie Member Posts: 196
    edited February 2012

    Sorry to read about progression K. -Lo. Hope next treatment will kill it but good.



    Linda: I dont believe there us any maximum length of time you can be on X. Its more a matter of how long it will worl for you. It has had no effect on my hair. The various side effects are all pretty individual. I have had an easy time with it and others have not.



    Sue: I have also gotten few brown spots on botton of my feet etc. Just a few but Im sure its fron X because never had them before.



    Judie

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Thanks Judie, Good to know that someone else has the same thing.. not that I wish any se's on anyone but hate to think its something worse (the brain always seems to think the worst)

    Linda, If you look on the stage IV page there is a pinned thread about Xeloda thats all on the top post. It has most of the se's and how everyone treated them, nice to not have to look through 41 pages! 

    My hair has definately thinned out... but if I style it properly I can hide the fact that its as thin as it is. Mostly fluffing it up & scrunching the roots when I dry it so it doesnt sit flat. Also had a good cut to make styling it easy. I lost mine twice so far from chemo's so Im glad I have something to work with.

    Im doing well on X, my last scan showed tumors were shrinking. Ive been on it aprox 18 weeks or 6 cycles of 3 weeks. I have HFS but its tolerable, loss of appetite, thinning hair & pretty extreme fatigue at times, but all of this gets noticeably better when Im on my days off. Overall its pretty easy as far as chemo's go.

    Time for sleep. Hugs Suz

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited February 2012

    Linda

    My onc indicated that I can stay on the X until I can no longer tolerate it or it ceases to work.  My hair is growing back in after being pulled of Abraxane in October when I then started the X.  It continues to grow and I have very little fall out.  The HFS is the annoying of all the SE's and I just keep moisturizing and keep socks on my feet - so far I have no cracking or blistering.  Burt's Bees with coconut oil is great but I do alternate with others like Bag Balm, Curel intense moisture and Heel-Tastic and I do wear socks all the time.  As far as hands go - I moisturize all the time and have not needed gloves yet.  I do get an occasional sore in the corners of my mouth but nothing inside and there is a precription cream that virtually makes it dissappear in a day.

    Welcome X Diva and wish you success!

    Low Rider

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Hello Linda,

    I'm not too far ahead of you - day 12 of 2nd cycle of 14 on, 7 off. I've been OK so far, just sore mouth, burnt tongue, fatigue, tender hands and feet and very slight nausea, but no hair thinning. This seems to be a very do-able chemo for me, though others have had more problems and I know it's still early days. I hope X will be gentle on you and tough on your cancer.



    Low Rider - I've got sores in the corners of my mouth at the moment, as well as the black tongue... I look like the Joker - not a good look!!! So I was interested to read about the prescription cream you have. What's it called? I'd like to see if I can get that here in the UK. Thank you!

    Take care, everyone. Hugs to you all, Angelfalls xx

  • singletona80
    singletona80 Member Posts: 44
    edited February 2012

    I noticed that my eyes water and Im having to constantly blow my nose alot and I wake up in the morning with an eye full of crust, does anybody else experience this ?

     Tomorrow I go in for my next round of taxotere and I start back up with X tomorrow getting a little antsy, gonna take my anxiety pill tonight. Although I did enjoy my 7 days off X

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited February 2012

    I did when I was on it, alot!!

  • frankandfernsmom
    frankandfernsmom Member Posts: 4
    edited February 2012

    Just wanted to say thank you for the feedback! 

    Enjoy the week!

    Linda

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Singletona - I sometimes get a sticky eye in the morning which runs a bit when I get up, but hadn't made the link with X! I've also been sneezing lots over the last couple of days, but think I may be coming down with a cold... :0(

    And yes! The days off are great! 2 more days to go for me, then I get my 7 off. Yay!!

    Good luck for tomorrow and your next cycle.

  • singletona80
    singletona80 Member Posts: 44
    edited February 2012

    Thanks ladies, I'll just keep a pack on Kleenex in my purse for my eyes and nose.



    Angelfalls - oh no hopefully your not getting sick, I'm assuming that's the worse while your doing chemo

  • lilylady
    lilylady Member Posts: 478
    edited February 2012

     What have any of you been told about using supplements while on X? MY onc didn;t say anything to me but I didn;t ask either. I read on another site where someone posted absolutley none while on this. No resources but they said their onc told them that.

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Lowrider, I hope you enjoy your time on "home chemo". I really did. Don't be afraid to ask for a little decrease if any se's get unbearable but then you can also try ritalin for fatigue, certainly keep immodium ready at first sign of diarrhea, and enjoy your time away from infusions.

    Alas, Xeloda and I must part. Its not him, its me. It was great while it lasted and ill always remember our time together fondly. Its just that Halaven has more to offer me and I must choose stability over fun. I'm not getting any younger.

    Ill check back in and catch you all on the other paths if our journeys.

  • Lynn1
    Lynn1 Member Posts: 209
    edited February 2012

    Hello Divas!  I have been off the board for some time.  Just popping in to say hello.  Sorry to see so many new names on this thread, but welcome!!  And thanks for keeping it going while I've been away. ;)

    For all the newbies to Xeloda I just want to remind you that everyone does not get every single side effect noted and the degree of se's is also very varied.  Some may have a really hard time with one, while someone else has no trouble at all with the same thing. 

    If you are having really horrible side effects, PLEASE talk to your onc about lowering the dose.  I was amazed at what a big difference a very small change can make!  We have played with mine and got it just right I think....seems to be working on the cancer, and I have hardly any se's now.

    I'd also like to share a tip for a cream I found for your feet.  It's a CVS brand and it's called "heel cream" - very generic packaging.  It's sold near the other foot stuff (also says it is for diabetics).  It is kinda grainy but I mix it with a little "regular" lotion and put that on in the morning.  I still use Bag Balm at night, but I couldn't stand that stinky, sticky stuff during the day. 

    Hope one of these tips will help someone out there! 

  • justjudie
    justjudie Member Posts: 196
    edited February 2012

    good to see you again Lynn. Welcome back.

  • Treso
    Treso Member Posts: 68
    edited February 2012

    Singletona80:  I just saw your post from two days ago.  I was on X and Taxotere for 6 1/2 months and suffered (still do) from crusty eyes in the morning (not every day), tearing eyes during the day (not every day) and a runny nose (most days).  It's been 2 1/2 months since I stopped and am hoping this doesn't last a whole lot longer!

    Theresa

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Tearing eyes & drippy nose are a SE from loosing nose hairs & eyelashes as well... could this be the problem?

    Starting to feel the anxiety already... I see my Onc for the first time in six months on thurs. Its been pretty tough emotionally going through all this without an Onc that knows my history. Hope I at least get the full 15 minutes to talk with her & not a flybye visit.

    Hugs Suz

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