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All about Xeloda

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Comments

  • deenah
    deenah Member Posts: 38
    edited January 2012

    I was feeling pretty good until today (day 5 on xeloda). I woke up at 6am with terrible muscle and joint pain, chills and fatigue like I haven't felt in a while. I wasn't expecting the pain as a se. Anyone else with these se's? Oh and don't let me forget about the burning runs! Yuck!

  • justjudie
    justjudie Member Posts: 196
    edited January 2012

    Oh yes, the god awful runs!!! I can certainly sympathize. Immodium works well for me, at least for a few days. but when it comes on it is no joke. I have been on X now about six months. I find the fatigue is getting worse. I never made it out of bed at all yesterday. I have muscle joint pain too. I am aso on Faslodex. so mot aure if the muscle joint pain is X or the Faslodex. Just have to keep reminding myself that it is keeping the cancer stable, so hang in.



    Judie

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

    omg still have diarreah all the timee, needed to stay near a bathroom whereever I went...I was on X from July til now and off now....fatique was not the worst part I think the H&F was and now it will take about a month of it to get out of my system....muscle cramps (charley horse) is a side effect

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

    Have some X left over they are 500 mg and there is 1/2 bottle if you want me to send them to you PM me....

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

    Why is it so hard to choke them down?  :-(((((((

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    I hear you on that one, K-Lo! Couldn't they coat them in chocolate? Would make it so much easier and more enjoyable!

  • singletona80
    singletona80 Member Posts: 44
    edited January 2012

    I agree when I take X I almost always gag. I feel like the pills are so big

  • singletona80
    singletona80 Member Posts: 44
    edited January 2012

    On the 30th of this month I go in for a CT scan to see how the chemo is working . Im currently taking X and taxotere. So far the HFS is under control , I just keep on moisturizing

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

    Singleton best of luck. You are on some good meds...... will be thinking positive thoughts for ya!

    X went down better with my delicious smoothie today.

  • Angelfalls
    Angelfalls Member Posts: 83
    edited January 2012

    Fingers and everything else crossed for you, Singletona! I'll be thinking of you and sending positive vibes across the Atlantic!

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited January 2012

    Hi X-Divas!

    I'm back!  After a harrowing 5 months of a major mistake in my medication - I am 2 1/2 weeks detoxed and started the X again today!  7 on, 7 off - hands good, feet - ouch major but no cracking as I have obtained an entire box full of various moisturizers that are working great!

    Luck to all!

    LowRider

  • thisisme
    thisisme Member Posts: 45
    edited January 2012

    Cycle 1, Day 1 of Xeloda.  Immediately had diarrhea and nausea.... Gotta be all in my head.... No wait, I had a brain MRI and there was nothing there.  Sealed.  FIrst time off hormonals in 3 years so interested to see if hot flashes decrease.

    Ugghhh.

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Sorry to hear about the trots thisisme. I havent had that issue because Im taking Oxycontin... more than anything im constantly fighting constipation Undecided.... not sure which is worse. Dont let yourself get dehydrated though. Did the docs give you something for the naussea?

    Hmmm hot flashes, Ive noticed mine are definately getting worse over the last few weeks. Not sure whats causing that, thought I was past the worst of them.

    Here's hoping X will be your miracle drug! Hugs from a fellow Vancouverite (well Richmond) its almost Vancouver. Im right across the river :) just off river road

    Hugs Suz

  • deenah
    deenah Member Posts: 38
    edited January 2012

    Lowrider - I just read your other post. What an ordeal you have had! I am so glad you are getting back on track.



    As for me, I had that one bad day last week, but my 6th and 7th days on xeloda weren't bad. This is my off week and then I'll be back on for 7 day. I know the se's can accumulate, but if I have just 1 or 2 bad days every week and a half, I can do this!



    Now if insurance would just pay for xeloda the way they do for infused chemo. It is so frustrating that on top of everything else, the meds practically bankrupt you!

  • sueper13
    sueper13 Member Posts: 360
    edited January 2012

    About halfway through "week off" of 2nd 14/7 cycle.  Had a lot of nausea and vomiting this time, even with maxing out the nausea meds. (Zofran, Phenergan, Ativan)...feet and hands dry-ish but not painful.  Using the bag balm and going to bed with socks on, although the socks are always next to the bed on the floor in the morning and I never remember taking them off!  I too am struggling with constipation from pain meds.  I am not even taking oxycontin, but am still taking hydrocodone from surgery in September and radiation of the surgery site through mid-December.  It's like, how long is this going to hurt?!? And I am already getting some bone pain from the Xeloda, isn't that fun?

    (THANKS FOR LETTING ME WHINE)

    Whiny Sue

  • hunkydory
    hunkydory Member Posts: 722
    edited January 2012

    I just started yesterday on 7/7. I guess it's too early for any s/e, but if a $924 a month copay isn't enough to constipate me or make me queasy I don't know what will. I also am on painkillers so I don't know if I will be saddled with dia(?)rea or not anyway. The cancer care plan I have signed up for assistance with was full this month but hopefully Feb. I can get accepted. My insurance carrier is with a federal government job that most all the assistance programs don't accept as one of their valid NO criteria. I have the chemo center and my onc working with me on it.



    Best wishes to all that are on this and those that have tried! You are all such a great bunch of women, and have provided such a great topic. Sue, did you get through your rads OK? I hope you are not in too much pain. You have been through a lot in the last couple months. Don't over due it!

    P.S Cute baby!



    Now I am going to have to go back and read up on all the lotions and potiions I need to try. I also am praying this chemo works for me. I just came off Of Navelbine with no luck. Please feel free to lend me any advice you can and keep your fingers crossed for the assistance program to open up next month! Good Luck all! HunkyDory

  • Unknown
    Unknown
    edited January 2012

      Hello Divas,   I did not read all the posts, but hope and pray that Xeloda is doing the job for all of you. I am checking in here since this was always one of my favorite threads.  See a few posts I will comment on since they are on this page....Hunky, I did not get the hand foot syndrome, but have found I never so seem to get bad SEs with most of the treatments I have done.   I used Bag Balm as well as Working Hands and slept with socks and gloves.  I did get a little cracking around my nails, but the creams kept my hands and feet really soft.....also got some redness, but no peeling so I was very fortunate.   I have gotten constipated from every med I have done so did not get the big D.  Sorry I can't offer more advice, but you will find some very informed women on here who have done well on Xeloda.   Low Rider, so good to see you.....I know some people who were worried about you....pray the X works for you.   Sue I get emmend and aloxi via IV premeds and never have had nausea....I wonder if those come in a pill form?  Deenah, Try drinking tonic water....it has quinine in it and dose wonders from cramps and muscle pain.....I used to keep it by my bed.   Single.....good luck with your scans on Monday....that is always a stressful time, but I always feel better knowing what is going on as opposed to wondering. Judie, Hang in there....this one has been working for you for a long time.

    OK, now I will tell you about me....I think the Adriamycin is working. As most of you know I was going for a record with tumor markers, CA 27.29. After going off Xeloda when scans showed more progression, we did a CA 27.29 to start with and I forget what it was 7.448 I think?   Then we did one after three treatments of Adriamycin. I started it on Dec.7.      I am getting the lower dose weekly as opposed to the one big dose every three week and it has been very easy for me.....no nausea, no aches or pains or whatever else goes with it, constipated, but sennacot takes care of it and I am losing hair, but slowly.....it is only after two months that people are saying they can tell it has thinned a lot. I was happy when I saw hair coming out and thought Oh good, maybe this one will work. Well, we did the tumor markers again and they were up, but only by 200 so that took me to 7,688....I say only because when we did them after Xeloda and my short break ( wanted to go til after the holidays, but when the MRI said liver tumors were too multiple to count, plus I knew the largest one was almost 9 cm, I got scared and called and told them I was ready, more than ready to start treatment again) they had jumped up over 1,000.   So we did the CA 27.29 again on Jan. 18 because that was #7 and I had completed 6 so that equaled 2 full doses and low and behold, they are down to 6,168.....a far cry from normal, but that is almost a 1,500.   So I am a happy camper and resting much easier.....have been having PT for this leg pain I was having that was keeping me awake at night and that has given me immense relief so I just need to concentrate on doing my home exercises inbetween treatments.   We were going to to a CAT scan of just the liver on the 30th, but now that the numbers are going in the right direction for a change, the onco said we can hold off on this and hopefully given a little more time we will actually see some shrinkage in the liver.  When I started on this he said there was only a 20-30% chance it would work and he was not looking for shrinkage, just wanted to get things stable and I said I would be happy with that.  But I am truly elated...this is the lst sign of any improvement since I quit the Abraxane in July 2009.  I am not looking for a miracle, just want more time. 

    I hope you all have a good day and get good results with the Xeloda.  And remember Hope Springs Eternal!! 

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

    Marybe, I like it when you say things like "I'm a happy camper" and "I'm elated".  Can I get an AMEN, sisters?   Woo.   There's our inspiration.

     Now, Sueper, as I said in another thread today, some days I wonder WHY?   Then Ill do something amazing with friends or DH and feel so fabulous.  So, for me, its getting thru the bad days with drugs, sleep anything.  That sounds healthy....NOT

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

    hey i got that authorization to lower my dose (as i already did)

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited January 2012

    Hi Marybe...

    Good to hear things are dropping your TM's.  The X has been dropping mine too - was 247 and now in the 170 range...'stable' for me in the TM's is around 100 to 115 so I believe I am on my way. 

    I have also decided that the abdominal wall sprinkles once reduced to the tiny ones gone and I am left with many less, I want to go with the surgical option (needle aspiration likely) to physically remove them.  In all my research, the Abraxane-type chemo does NOT work, the Avastin is and the Xeloda seems to work a bit differently that the infused chemos.  It was determined that removal could potentially rid the cancer permanently and it does not return.  It may take several surgical sessions but I am going to insist that we try it.  At that point, I should be left with only the bone mets (which has remained stable) to treat.  Now...this is in a perfect world...LOL.

    Hang in there girly girl...you are amazing and I wish all the best for you!

    Hugs

    Low

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

    my tumor markers are 37 but it has spread to my back, already was in my neck before X which there are no tm for, that is why they took me off the X

  • sueper13
    sueper13 Member Posts: 360
    edited January 2012

    Well, ladies, I saw the oncologist today and I am changing to 7 on/7 off for six more cycles....that should make it effortless.  Blondie, sorry about your back and hope you are not having any pain. Low, I hope they will do the surgery you want. Here's a new pic of the grandboy:Photobucket

    Isn't that smile amazing?!?

  • plumblossom
    plumblossom Member Posts: 22
    edited January 2012

    your grandboy's smile is absolutely amazing!!! Superb!!!!!

    I just completed my 14days X of the first cycle. So far so good. No much SEs. In the last 3 day felt tired&sleepy, and noticed my little toe changed color, no pain. Pbsom

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

    look at that baby, how cute!!!

  • sueper13
    sueper13 Member Posts: 360
    edited January 2012

    And forgot to add, Marybe, so good to hear your news...and welcome hunkyD!!! I share your pain on the government employee "cadillac" insurance which doesn't pay all that well for drugs BUT disqualifies you for any and all (OK, most, I'm being dramatic) assistance programs.....

    I think the 7/7 is going to be easier for me--for me the X se's seem to mostly be NAUSEA--BIG NAUSEA...and my bones hurt.   All that helps is a hot bath, which of course is a no-no for my feet.  Here's what I do: I run my usual HOT bath (I'm addicted, have always been a bath person), get in, then run just cold water directly on my feet and then rest them on the edge of the tub out of the water.  My feet are only in the hot water for the time it takes me to actually get in the tub.  I told the onco about this and she seems to agree I have found a way to cheat the "no hot baths" rule.  Literally the only time I don't hurt is when I am in the water.  I am glad I don't have to give up my baths.  Now if I can just figure out a way to get some energy....

    Take care and hope everyone rests well this beautiful night,

    Sue

  • justjudie
    justjudie Member Posts: 196
    edited January 2012

    Sueper, that baby is sooooooo cute! Just makes me wamt to kiss those adorable cheeks! He really is a handsome little guy. Thanks for sharing and I do hope you will feel better. Naisea is THE WORST.



    Marybe, i am so thrilled the damn Tumor Marker reaults are finally going in the right direction! Man, it was scary how high they were and how fast they were going up. Good old Red Devil! Im glad side effects are not too bad.



    I am hoping to be able to stay on X as it has been not too bad in the way of side effects. But the last couple of months my Tumor Markers have gone up about 300 points, now at 893. I will do a Pet Scan in two weeks and we will see whAts what. Its always something here in Cancerland,

    isn't it??



    Judie

  • suz45
    suz45 Member Posts: 85
    edited January 2012

    Oh my goodness, what a smile Laughing put a big smile on my face as well! Beautiful Grandson, that is such a blessing!

    Lowrider, Sending you hugs Hun, so glad to here your back on the sunny side and TM's are heading towards stable. Hoping you end up "in a perfect world" Wink ! At what point would they consider this type of surgery?  Getting rid of any cancer permanently, well that sounds absolutely perfect!

    Sueper, Love the bath routine idea... heh heh, I do sort of the same thing. I also have to try to keep my pleura drain area from getting wet, so I do a trial dunk to see if any bubbles are released when the bandaged area goes under water. My nurses lecture me as this considered is a no no! There's no way that I could ever give up my baths... When I remodelled my bathroom I put in an extra deep tub surrounded by Italian tiles. Add a few candles, spa music or a book and its what I consider to be the perfect total stress relief. Its my mini retreat. Uh uh Im not giving it up for no one :)

    Being in Canada they dont automatically do the bloodwork for tumor markers. But Ive asked them to monitor mine. Not sure what they are actually at right now, but they were going down last time I checked. Im about 10 days away from my bloodwork & onc visit. Am so happy that I will finally have my reg Onc back, 6 months of subs has been very stressful as I know they just glance at the last page in my file and dont know the whole picture. 

    Am definitely liking the 7/7 its much easier to tolerate & minimizes the se's when its just 7 days on. Im at day 4 and my feet are starting to peel but the burning isnt as bad this time. Have lots of on going big toe "nail issues" might have to see a podiatrist if it gets any worse, but its more of a leftover from the taxols. Am noticing that Im getting a headache after I take my morning pills but not with the evening. Think it could be food related (not eating enough in the am)

    Yes Judie, There does always seem to be something going on in cancerland... luckily its not always bad news. Hope all goes well with your pet scan in 2 weeks!

    Hope all you X Divas have a relaxed no se's Monday.

    Hugs Suz

  • sueopp
    sueopp Member Posts: 238
    edited January 2012

    Hey Sue - so funny, I do exactly the same re: the bath.  It's the only thing that relieves the aches, and my feet hang out and over while the rest of me luxuriates.  And re: the energy issue, I vote for chocolate.   Best to you - SUE

  • TJStarbuck
    TJStarbuck Member Posts: 1
    edited January 2012
    I'm not on X anymore. It stopped working. But what I thought was better than cream for my feet was aloe vera with something for sunburn pain. It cooled my feet down and helped with the pain. That and a pair of big fluffy slippers. Wink
  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Dear Divas,

    You may have heard that I created a Xeloda Tips document with all the gems posted in here.   True but i dont know how valuable it really is.  HOWEVER:  the Mods said I could post the entire thing as a new topic, so look for it inn Stage IV and maybe they will pin it as a permanent thread.

     Might be better if we DO NOT post htrere, Just let the advice stand as is?

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