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All about Xeloda

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Comments

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

    Apple something pointing to progression? I stayed on X with new bone, brain and eye lesions. Prolly cause I bitched about doxil.

    If you have the option to stay on it, what do you think you'll do?

  • MaryGLA
    MaryGLA Member Posts: 18
    edited January 2012

    I am now on day 12 of 14, and the Ban deodorant is still working on my feet. They feel better today than they did on day 2 before I read about using roll on deodorant. Try the Ban! No, I do not have a financial stake in Ban. :) I am also using Weleda Skin Food on my hands and feet, and that seems to work better than udder cream.

    Apple- I hope your new chemo kicks some cancer butt.

    I go for scans on Monday; results on Tuesday. Holding my breath until then. And munching valium.

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

    Went to primary care md today. He's so sweet and thorough. Actually zeroed in on the 2- month -cold issue and came up with solutions. Then he asked me about living will and end of life issues. GULP. damned reality, its everywhere.

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    K-Lo - Hugs Hun, Thats such a hard one isnt it.

    Im still so unsure on how to tackle all these issues....But its something we all will have to deal with at some point while we're still well enough to make these decisions. Personally I dont have a clue as to what I want to do... I think I can deal with it all until my thoughts turn to my husband and son. Well that just seems to be the one thing that chokes me up & brings me to tears.

    Gentle Hugs, Suz

  • apple
    apple Member Posts: 1,466
    edited January 2012

    oh i just have a tiny tumor in the other breast.. (who knows what is inside?)  also my onc.. sure felt around my neck for a while.. She said the Xeloda has an optimal period of efficacy (she has a wonderful vocabulary and i love the word efficacy) and there is a time to move on to another drug, wisely.  so that was 13 week cycles.  10 months about.  I might stay on it but doubt it.

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

    App: So fine needle bx? Or wait for scan? I love the word efficacy too. Efficacious. Did not know about X and its optimum time. Was wondering how long MO will let me stay on the nicest one so far.

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

    Where's Lynn1? Thought I had her phone number as we discussed being southern allies who could check up in each other, but....can't find it. LYNN where are ya, Atlanta gal?





  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    Hi, there, all you Xexy divas!

    After a two year plus run on Taxol/Herceptin, my mother has had her first progression -- a centimeter of growth on one liver lesion. I guess we knew it would happen sooner or later, but it was a big dosappointment all the same, especially considering we were told the scans were stable then called back after our celebratory lunch to be told they were looking at October's CT scan. :(

     On to Xelod/Tykerb now. I've read through the entire 38 pages of this thread over the last couple days, and I think I saw maybe one mention of exercise -- this is one of the things I'm really concerned about. Mom walks about 2 miles daily, and says it always makes her feel better physically and mentally. I'm so scared for her to lose that. Are any of you able to keep up an exercise routine while on Xeloda?

    Just waiting for everything to come through with the specialyty pharmacy. She should get the pills Tuesday and start Wed. 

  • sueopp
    sueopp Member Posts: 238
    edited January 2012

    Dear KarmaKitty, good for your mom and her devotion to exercise.  I myself do absolutely nothing in the exercise dept, and I know it's not good for me.  However, a small word of caution - I am on herceptin & tykerb too, and formerly was a walker.  The most common side effect from these drugs is the hand/foot problem, which I presume you have read about.  Some of us are not affected by this, but alot of us are (certainly tolerable but can be nasty).  It seems to be caused by shrinking of the small blood vessels of the hands and feet.  In my experience, sustained walking can really exacerbate the foot problem - probably because of the natural sustained rubbing of the shoes, pressure and etc.  Perhaps your mom will want to proceed with caution on the walking, as the key seems to be catching it early or heading it off completely at the pass.  Most of us cream our feet daily or several times a day, wear padded boots, enjoy foot baths, and anything else we can think of to baby our feet and hands.   I'll bet your mom can be creative about her exercise - I have considered swimming, stationary cycling, weights, and other things - of course being the lazy sot that I am, I haven't done anything!  Good luck, and best to you and your mom - SUE

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Hi KarmaKitty, I also was an avid walker... even through all my treatments & surgeries these last almost 5 years. I'm just over 3 months on X, but had pleura issues at the same time so its a little different.

    Anyway pre-cancer I walked 5-10 miles daily, that was stepped down with cancer to 2-6 miles depending on how good I felt. When I had the drain put in & started Xeloda I slowed my walking pace so that my feet weren't being pounded as much and wore a very loose & cushioned comfy shoes instead of runners. As the hand foot syndrome got worse I would stay much closer to home and make sure I had a phone on me just in case. Babying the feet is pretty important so for me, a foot bath was in order after walking, then loads of cream & very padded loose slippers. I don't walk everyday now I keep it for the better days. But I'm on my feet a lot at home.. its not just the side effects its the weather as well. We have had a ton of dismal rain and wind this last few months so I go walking about 4 times a week 1-3 miles and listen to my feet!

    Now that said its much easier on my days off xeloda and at its worst when I take the last few days of pills. Just this last cycle it was even better.. they changed my cycle from 14/7 to 10/11. Ive been walking every day for the last 5 days... not far but far enough to feel good. Again I ALWAYS take a phone and make sure DH knows which trail I go on. We live a 1/2 block from the dike and also have a really nice 3 mile trail through the woods (6 miles return) also have a 1 mile loop that is my street for evening walks.

    I hope this helps... part of the reason I'm feeling more like walking is the pleura has had much less fluid so it only needs so be drained once a week. Your Mom might do much better on X  without that hindrance. But she will need to listen to her feet more than anything. On days when you cant walk just going outside and sitting in a chair really helps, I do that rain or shine as I have a big deck that overlooks a big back yard (and a little dog that loves to go outside)

    Best of luck for your Mom and yourself as you help her through this.

    Hugs Suz

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    Thanks, Sue and Suz!

    You both mention footbaths -- do you avoid hot/warm water? What do you put in your foot soak? Mom has been doing vinegar and water for toenail issues related to Taxol.  

    @Suz -- I'm glad to see you have been able to keep up walking! Even at a reduced amount, this is encouraging! Getting outside isso important, and your deck sounds heavenly! My mom (and I, when I'm in town with her about half the year) go to a local park here. We live in the west Texas desert, and our little oisis with a few ponds and trees is something we consider vital for the spirit. We're always able to spot some local wildlife and adore the water birds the ponds attract. 

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    KarmaKittie - Im not sure whats recommended for foot-baths but I use epsom salt with very warm water (not too hot). Taxol did a number on my big toenails a few years ago (lost one & half lifted on the other) so now they have a tendency to curl then cut into the skin & start to get an infection quite quickly. I also use iodine on the problem area.. this really helps and I just use one drop around the edge of the big toes and leave it on. If one of them starts to gets infected this stops it in one day :) nothing like old fashioned remedies!

    Your park & ponds sound beautiful and I'm sure it would rejuvenate the spirit. Nature does give us that gift if we take the time to enjoy it. I'm glad to hear your mom & you have that close by as well. I like watching wildlife.. lol even the ones that invade my yard. I have a small pond in the front that attracts all sorts of critters. Had to take the fish out of it because they were becoming food & the spitting frog water feature a shower for a raccoon family.

    I live on the West Coast (Vancouver, Canada) and there is beauty in nature everywhere you go between the ocean, green space & mountains. I cant imagine being anywhere else for any length of time, I really love it here... well I guess the rainy winter kinda sucks because I like snow & sunshine too. I used to get my snow fix by skiing... I miss that the most. Since C Ive just gone to a local ski hill and did the apre ski (hot chocolate & a burger) haven't done it yet this year but maybe its about time :)

    Please keep in touch and let us know how your moms doing.. I love the fact that I see so many daughters on here looking after their Moms. You must me such a blessing for her!

    Hugs Suz

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    Aww. Thanks so much, Suz, btu she's the blessing for me! Your home sounds just like where I aspire to settle down someday. Right now my husband is an Emergency Medicine resident in Ann Arbor, MI, and I absolutely love it there. So much beauty everywhere -- parks and trails to explore -- the great lakes not too far in any direction. We buy big bags of cheap-o cat food and feed the raccoons and opossums right outside out back window. ;)

    Ok - -emsom salt and warm water. I'll let her know. I have also been reading about henna. I ordered some a little while ago, so it will be here in a few days. Have you tried it? I'm thining I might play around with it, too. A peace sign on the inside of my wrist, maybe, as a calming reminder. 

    Go get yo ski on! Sounds fun! Do you have snow there? Ann Arbor has had a warm rainy winter so far. Blech! The yard smells like boggy sewer! (My sweet little critters leave stinky thank yous!)

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Off topic..

    Lol, No snow here... just rain :P we normally get about 3 snowstorms or freeze ups a winter and they last about 2-5 days then the snow is gone. Its very wet here right now as well. But the mountains in the city normally have a good snowpack (except for the Vancouver/Whistler 2010 Olympics, lol) We had almost nothing that year and had to have snow trucked up to the mountains. Its about a 35 - 45 minute drive across town (if there's minimal traffic) to get to our 3 local hills. Pretty good skiing considering there right in town. But no skiing for me any more :P will just have to have a burger & hot chocolate while I watch everyone (thats fun too)

    I hate to say it but I still color my hair at the salon with a no ammonia color Embarassed Mines so thin from so many chemoes & now the X.. I had to get a special cut & color to cover the thinness of it.

    Lol, enough said... you are more than welcome to pm me anytime.

    Big Hugs Suz

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    5-6 inches of snow out here in the desert today and still falling!

    The pharmacy is shipping Mom's Tykerb/Xeloda today, it will come tomorrow, and she will start Wed. Nervous aboout side effects, but anxious to get going. Hugs back at you, Suz! 

  • mmdj43
    mmdj43 Member Posts: 1
    edited January 2012

    I have been on X since 3/11.  I started with 2,300 mg daily (two weeks on, 1 week off).  But my side effects of the HFS were bad.  I have found that walking barefoot on the cold floor tile was very soothing.  A friend of mine actually uses a frozen water bottle and rests her feet on it at several times during the day.  Pretty much anything cold is soothing to the feet (and hands).  With the constant side effects, my Onco has now switched me to 2,000mg daily with a schedule of 7/7 (one week on, one week off).  Is anyone else on the 7/7 schedule?  My Onco said that studies are suggesting that it is probably just as effective as the usual 14/7.  Any feedback would be greatly appreciated.  Thanks!  Mary

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

    Hey mm

    I'm on 7/7. There's a study that showed women tolerating higher doses with that schedule. Many docs still go with 14/7.

    Glad y'all are finding solutions. Still looking for Lynn1. Anyone?

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

    Fyi: Lynn1 is okay. Using other media. :*)

  • steelrose
    steelrose Member Posts: 318
    edited January 2012

    Thanks Kathy... I follow all of you and have been wondering about "Lynnie!"

    Love to all...

    Rose.

  • djz2003
    djz2003 Member Posts: 3
    edited January 2012

    My onc just switched me from 3000 mg daily 14/7 to 7/7 because of stomach problems.  I have been using the generic of Zofran twice daily but still have upset stomach most of the time.  He said that studies show 7/7 works as effectively as 14/7 but usually the dosage is raised.  He didn't raise mine because of the stomach issues with 3000 mg.  I have only been taking X since November and won't have scans until first of February so don't know if it is working.  I have two tumors on my back in the subcutaneous tissue and haven't notice any shrinkage in them.  I rub them all the time and I think I feel a new one starting so I'm wondering how long it takes X to work or if it is working at all.

    Debbie

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Debbie, I was on a 14/7 for three cycles. I wasn't sure but I thought I was feeling lumps where there was none before & couldn't tell for sure if my noticeable lump at the base of my throat was getting smaller or just flatter (it was a large cluster of numerous tumors) Thats when I had my first ct scan. I posted a thread X kicking C to the curb.. and it was! All my tumors (I have a LOT) were shrunken by at least a third (this was re-confirmed today)

    I had/have a sub Onc right now and he hadnt heard of 7/7 so put me on 10/11. When I mentioned it again today he called another (older) Onc & the agreement was yes 7/7 was a good thing for anyone that had HFS or other se's that were getting bad. Soo im joining the 7/7 team today as well. My dosage wasnt changed its still 1650 twice a day (Ive had the same dosage with all three types of cycles)

    MM, Your right! I didnt even think about it that way. I go out on my cold frosty deck barefoot without even thinking about it to let the dog in the back yard. Dh just complained at me that I was outside barefoot yesterday (temp was at freezing) Guess subconsciously I was relieving my feet :)

    K-Lo- Glad you found your friend Lynn... Im still trying to get used to everyone again... I see so many names I remember but not sure If they were a part of one of my groups or a group I followed that was ahead of me in tx.. (mostly chemo then on to other area's) that I only followed. Just realized the other day my Oct 09 chemo gals here Embarassed its really embarrassing. 

    hugz suz

    edited for really bad spelling!!

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    Hello, Divas!


    I just finished reading all 38 pages (it's taken quite a while...!), and just had to post to say thank you to all Divas past and present for the invaluable information you've shared here over the months - I have filled an entire page of notes from all the tips you've given! And thanks also for sharing your love and support of one another with everyone that's come along during that time, the highs and lows, cracked and smooth, runs and constipation...! ;0) I have already got so much from this epic thread and am humbled to join such inspirational Divas.



    I am on Day 9 of my 1st cycle, 14 on 7 off, 4000mg daily. So far, the SE's are very minimal for me, but after reading 38 pages, I realise that it's early days yet and that X is nothing if not unpredictable! I hope to earn Diva status over the weeks, months and years (?!?!??!!!!) ahead and, even though I'd rather not have to join you, I'm so glad to have found you here!



    Here's to good outcomes for all of us!



    Angelfalls xx

  • sueper13
    sueper13 Member Posts: 360
    edited January 2012

    Well, divas, I'm baaack!! Started cycle 2 on January 7th, finish cycle six on April 13th, then go live in the land of scans every ninety days for...ever?.....a while?  Who knows.  Did fine on the X until yesterday when my evening dose reappeared ( I vomited) after about 15 minutes.  Then the exact same thing happened this morning.  Have a call in to the onco nurse about what to do.

    Much love, and yes, Angel, here's to good outcomes for all of us!!

    Sue

  • justjudie
    justjudie Member Posts: 196
    edited January 2012

    Hi Amgelfalls and welcome to X Land. I do hope that you will do wonderfully well on X with minimal side effects.



    Hi Sueper....that is not good about the vomiting. Hope the onc will have a good suggestion for you. Gotta keep the X down so it can kill that cancer! Thinking of you and I hope the situation improves





    Jufie

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

    Back on the poison today for 7 days, love the 7/7......14/7 seemed neverending...

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    I hope I do well on it too.. today will be day 3 of my first 7/7

  • plumblossom
    plumblossom Member Posts: 22
    edited January 2012

    Thanks for your posts. I started Xeloda today. Those tips are great help.  

  • KarmaKittie
    KarmaKittie Member Posts: 24
    edited January 2012

    Good luck, Plumblossom!

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Hugs Plumblossom, sending a warm welcome and looking forward to hearing possitive results!

  • plumblossom
    plumblossom Member Posts: 22
    edited January 2012

    Thanks KarmaKittie and Suz45. I havn't feel anything. At least no nausea so far. I will keep you informed what my progress is. Pbsom x

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