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All about Xeloda

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Comments

  • justjudie
    justjudie Member Posts: 196
    edited April 2012

    Lol Chickadee!! That gave me a good laugh!



    Judie

  • Chickadee
    Chickadee Member Posts: 469
    edited April 2012

    This mornings threat showed some culture.



    OUT. OUT. DAMN. SPOTS.

  • lovinmomma
    lovinmomma Member Posts: 105
    edited April 2012

    Sorry Judy. That stinks, but yay for getting into the trial. Starting to get a little bit of hand cracking. Gotta go find what that lotion from Home depot and Lowes was called.

  • Lynn1
    Lynn1 Member Posts: 209
    edited April 2012

    Lovinmomma:  I think the one you are looking for is called "Working Hands".  It's in a small round green container.  I found it in the paint section.  Hope it works for you!!

  • sueper13
    sueper13 Member Posts: 360
    edited April 2012

    You know, I am having A LOT of trouble with my feet and hands, but it's not a skin thing, it's pain/tingly/numbness...electrical feeling in my feet and hands, progressed to the tops of my feet and hands as well.  And my bones hurt. Thanks, HunkyD...you are right.  I don't think the last round is going to make that much difference except I have to GET MY HEAD right first. I still don't know if I'm going to do it.  LOVE THE MESSAGE on the Xeloda but I don't think ink is good for us!!

    MY GRANDBABY AND HIS MOTHER ARE IN THE HOUSE!! They'll be here til Friday, we went and found him a travel crib today...what a great day!!

  • justjudie
    justjudie Member Posts: 196
    edited April 2012

    That is great Sue. Enjoy! Having a baby around is a happy time.



    Judie

  • Chickadee
    Chickadee Member Posts: 469
    edited April 2012

    A tiny micro touch of ink is waaaaaaaaay low on the things we ingest worth a moments concern to me.

  • lilylady
    lilylady Member Posts: 478
    edited April 2012

    I had scans this week and the results were a mixed bag. Some things shrank and got less active-others did the exact opposite. Also learned the Rads people fried the upper third of my right lung-OOPS-I guess way too high a  dosage and not enough shielding. Great to know when you already have lung mets.

    Onc says he was pleased with the results-makes me wonder how low his expectations were. Liver is still clear and the biggest one-which is in a tracheal node-shrunk by half. So not totally bad news. He said he feels good about staying on the X and T til my next scan. I am also taking a chemo break in May to enjoy some vacation time. regardless wether the results were good or bad I had already got his OK for that. Feet aren't bad-hands are so tender and cracked. making gardening a real struggle. Biggest issue is stomach stuff. Always need to know where the bathroom is.

    judie-can't wait to hear more about the trial.

  • Lynn1
    Lynn1 Member Posts: 209
    edited April 2012

    Lilylady:  I hate it when resutls are mixed like that!  Like, HOW can it be working in one area and not the others?  Makes no sense to me!  Stupid cancer!  Great news on the one shrinking in HALF though!  Awesome!  Good for you taking some time off for vacation!!  Hope you have a great time!!  Where are you going?

  • Chickadee
    Chickadee Member Posts: 469
    edited April 2012

    4 more tablets tonight and I made it through my first cycle. Little bit of the big D. I thought I felt a tingle in my feet but nothing lasting. Skins fine. So far so good. Hope it's working.



    Blood test Monday, check up with onc Tues.

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

    Hey Chick I had minimal skin se's with random big D. Hope u tolerate it as well. Of course fatigue was also random for me

  • petjunkie
    petjunkie Member Posts: 39
    edited April 2012

    Hi gals,

    Xeloda makes my feet swell, especially the tissue around the toes. I've had a bit of in ingrown toenail and after 6 months finally decided to have a podiatrist take care of it. In our discussion we talked some about hand/food syndrome and he suggested I try an ointment with 1% hydrocortisone on my feet. Has anyone tried that? I'm somewhat skeptical because I always throught that cortisone products thinned the skin, but maybe that's just an old wive's tale? I have no memory of where I heard that.

    Does anyone have suggestions to speed wound healing time? Seems like every little cut I get takes FOREVER to heal. I want my toe to heal up and I also have a spot on my ear that keeps scabbing up and bleeding. Tons of sores on my scalp and face, too, and they just seem to take months to heal. I have Clydamycin gel (sp?) and that helps the tykerb/xeloda rash/acne, but it seems the red marks never really fade.

    I've been on X about a year now, before that Taxol. That plus instant menopause seems to have left my skin very thin and wound healing incredibly slow. 

  • sueper13
    sueper13 Member Posts: 360
    edited April 2012

    Petjunkie,

    Sorry you are having issues with swellling, I've had them and they can be really scary.  As to wound healing, I have no advice other than following my PS's regimen after surgery which was to "agitate" the wound (gently rub it, for instance in the shower), clean it off with sterile gauze, and leave it alone--no neosporin, etc., as skin healing BEGINS with an inflammation response and antibacterial cremes prevent that.  That, and aloe vera worked for me.  Hope that helps. (I want your toe to heal up too).

    Hope everyone has a good night!!!

    (Edited to ask: Do you have a lot of pets? Hence the screen name?)

    Sue

  • petjunkie
    petjunkie Member Posts: 39
    edited April 2012

    Thanks Sue! The swelling isn't too bad or scary, but on my toes it's making it difficult for the nails to grown without getting ingrown. Just one more dumb thing to worry about! I'm going to ask my podiatrist about the neosporin thing-- what you say makes sense to me. But I'm also so worried about getting an infection. 

    Yes, I love pets! I have two dogs and two cats. Would have about a hundred more if I could :-) 

  • lilylady
    lilylady Member Posts: 478
    edited April 2012

    petjunkie-I have been fighting off calling the foot doc but I think I have 2 ingrown nails.Never been to a podiatrist and never had a oedicure-I just don;t want someone messing with my feet. the bottoms of my feet are like a turtle shell. very hard with random cracks. Still able to do some walking but I never go barefoot anymore-I need the padding.

      have discovered fingertip band-aids. I have all those carcks around my fingernails and I found out the fingertip band-aids help pad them. it also seems like it helps if I put cream on the cracks before applying the band-aid. Worst problem is between going to the bathrom alll the time and working on greasy machinery for myiving i have to change them a bunch of times during the day.

      even though I got soem growth and some new tumors we are going to stay on the X and T til june and hope that the Pertuzumuab gets approved in June. He said we will move immediately to it. Drug mfg web site has said it will be widely available-hopefully that means they have large stockpile.

  • hunkydory
    hunkydory Member Posts: 722
    edited April 2012

    LilyLady, glad there was some good news along with the scans.  I would like to take a vacation break also but DH hasn't scheduled any time off.  He has been so good about taking off to go to Dr.s  Appts., etc. with me it seems hard for him to ask for much time off.  Chickadee, you said you were taking 4 tablets tonight.  You are on a stronger dose than myself.  Sounds like your getting along ok though.  Sue, so sorry about your tingling  feet and bone pain.  Talk to onc about it and see what she/he comes up with.  I think your body is really saying I've had enough for a bit. 

    For me, I am starting a new session today.  As far as feet goes I have the peeling issue.  It came off in large fine sheets like a sunburn does. My soles felt burnt also.  Damn, what if I drop a shoe size with all this peeling ....I just might have to seek some pleasure in retail shoe shopping.  LOL!   The fatigue is an issue for me also K-Lo, but mine inot random.  We have pretty much gotten the dosage at decent level that I can handle I think though.  PetJunkie, I have no advice on the healing issues.  Hope that clears up for you.  Everyone have a good day.  HunkyDory

  • sueper13
    sueper13 Member Posts: 360
    edited April 2012

    Hunky, now you be careful talking about that retail therapy thing, I am within driving range of you!!!

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited April 2012

    I am wondering if anyone has taken 2 months off of Xeloda.  What I want to know is if you have, did the tumors start to grow again and markers go up or did you stay pretty even.  We are taking a trip to Alaska the end of August and my oncologist said he would take me off of Xeloda for 2 to 3 months before I went so I would be able to enjoy the trip.  I am going to opt for only 2 months off or 1-1/2 months off.  It makes me nervous to go off of it for any length of time, but I do trust my onco and he would know more about this than I do.  I take 1,500 mg twice a day for a total of 3,000 7 days on and 7 off.  I know it depends a lot on each person but was just wondering what to expect and then how soon you started feeling better once you were off.  I am sure I will start back on it the day we get home.  Any thoughts on this would be greatly appreciated, thanks.

  • sueper13
    sueper13 Member Posts: 360
    edited April 2012

    JeanieB, so glad you are LIVING and taking vacations and stopping the X so you can enjoy...sorry have no technical answers for you but I am sure others will.  Much love to you.

    Sue

  • Chickadee
    Chickadee Member Posts: 469
    edited April 2012

    It would make me nervous to be off it so long. I'm in the planning stages too and was going to try to schedule it for my 7 day break. Have to ask the onc.



    Alaska will leave you with an aching jaw from saying WOW! Love to drive up there again.

  • purple32
    purple32 Member Posts: 1,767
    edited April 2012

    My husband was on xeloda for 9 mos. I *know* this is not medical advice, and it may not even be sound advice, but I will tell you " our story".

    Over time, he got up to 4 in the AM and 4 in the PM  - each at  500 mg. (4000 mg per day) for colon cancer.  Anyway, he worked FT thru this and rads etc ... and the 8 hits were wearing him down. His onc wanted him to go up to 5, two times a day.  he tried , but he was waaaay too wiped to function. We called the dr. and he downright INSISTED.  I finally convinced my husband to stay at 4 (total8) a day. We actually told the onc. he was doing the 5 twice a  day. Yes, we did . No regrets here.  You know your body.


    Good Luck to you.


    PS  He is doing fabulously well.

  • purple32
    purple32 Member Posts: 1,767
    edited April 2012

    My husband took one month off xeloda at Christmastime ( colon cancer) and is fine.

    Everyone is different.

    Best Wishes to you.

  • Chickadee
    Chickadee Member Posts: 469
    edited April 2012

    Starting cycle number 2 today.



    Week off was bizarre. Stomach settled down but coughing/fatigue came back so bad by Thursday I called the onc Friday morning first thing. She wants me back on prednisone and got me an appt with a pulmo guy Wonder of wonders I didn't cough at all Friday, energetic, and very confused. It's like some weird roller coaster ride.



    Felt pretty good today too although a lazy nap took over this afternoon Tuesday I see both Docs. Maybe it will make sense then.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited April 2012

    Good luck with the appointments, Chickadee - hope you can stabilize soon.

  • braids3
    braids3 Member Posts: 131
    edited April 2012

    i am joining u guys this week my Xeloda will be here tommrow. have learned alot reading now i get to try the stuff. any tricks for the summer months coming up i have a festival i work for 18 days in texas and am concerned about the heat making hfs worse? heres to a new chapter.

  • lovinmomma
    lovinmomma Member Posts: 105
    edited April 2012

    I am on round 4 of this drug. ZStill not having much in side effects. A bit tired, but I am also so busy that it makes me tired normally.

  • lilylady
    lilylady Member Posts: 478
    edited April 2012

    jeanieb2, I am taking an X break myself. I asked the onc last month and he was very supportive of it. I am doing 1 more week then quitting it and Tykerb both til June. I thought it was fine idea til I got some progression on my last scan but I am sick of being tired and my hands and feet are so tender now. I am going to garden and be out in the sun and eat whatever I want without worrying about where the closest bathroom is. Take your break and enjoy your trip

      If it grows I will just live with it  and think it was worth not feeling bad for a month. I take 4000mg a day of the X and 2000mg of Tykerb. The X is 14 on 7 off. I do really well during the 14 days it is the off week that I am so toxic.

      I got an e-mail from gentech about doing an interview about Xeloda that will take 75 minutes and they will pay me $125. I signed up but not sure yet if they are going to use me. The guy said he will call today.

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited April 2012

    Sue - Thanks for the nice note, and you are right I am LIVING, but had not thought of it that way until you brought it to my attention.  I guess I have let X dominate my life since last August, although I have learned when to plan things and when to not plan anything.  I thought I knew, but just when I have it figured out, it changes on me.  Much love to you also, Sue.

    Purple 32 - Thank you for letting me know that your husband did take a month off and things were fine, I just need those little encouraging words.  I know that everyone is different and will respond differently but just knowing that someone HAS actually gone off for a period of time and had no problems is what I like to hear.  I also know it can go the other way with someone so am prepared for that also.  Best of luck to your husband. 

    Lilylady - I am so sorry to hear about your scans showing some progression.  That is not the kind of news anyone likes to get.  My onco said he would do scans before I take the time off and I thought they should be done after but I can see now where they should be done before I stop.  I am not taking anything with the X except Zometa monthly which I will continue to do.  I  will hope and pray that both of us can take the time off and not have any signs of progression by being off for a while.  I completely understand about the feet and hands.  It is hard to plan around that sometimes, just when I think that the 5-7 days of my "on" week are going to be the worst for my feet, it turns out that is not so and then the first couple of days of my off week are bad.  Oh well, I am just going to enjoy the good days and read on the other days.  Please keep me posted on how things go while you are off.

    Thank you everyone for your response to my question.  I know that we all are different and can affect us differently but it just helps to know from someone that has been on it.  I know the onco sees lots of people on this and knows what can happen.  He is one of the best doctors and is always open to anything I may suggest.  I started out taking 4 pills in the morning and 4 in the evening but when the hand and foot started to show up a little he cut me back to 3 each time so that it would not get worse.   I was hesitant to do that becuase I thought if you were not feeling any side effects it was not working, I know that is all in my head, but you know the saying "no pain no gain", which is also not true but it is hard to teach an old dog new tricksLaughing. 

  • Lynn1
    Lynn1 Member Posts: 209
    edited April 2012

    Braids3 - Welcome!  The heat may make things worse for your feet, but then again it may not...so hard to say since it seems to affect everyone differently.  I would try and wear sandals so they are less hot.  If that is not an option, maybe you can find some time here and there to just take off your shoes and cool off your feet.  Maybe bring some ice packs for them (not sure you'll need that, but just in case).  I read once that if you feet get really hot feeling, you can use ice packs or frozen peas to help cool them down.  I haven't tried it myself, but sounds like it should work!  Good luck at your festival!  Sounds like fun!

    Lovinmomma:  So glad you're not having much se's.  That's great!  I get tired sometimes too, but hard to say if it's from the Xeloda or just being busy!

    Jeannie!  Wow!!  That sounds like an awesome trip to Alaska!  That's one place I always wanted to go (want to see the whales!) but it's just not in our budget.  Take lots of photos!  I'll live vicariosly through you!!!    I think if your onc suggested the break, that it would be ok.  When I got a two-week break once, I saw a great improvement in the se's right away.  I hope you will too and will feel awesome during your vacation!  

  • Chickadee
    Chickadee Member Posts: 469
    edited May 2012

    Woohoo, onc agreed I'd be fine doing 7/7! We'll scan at the end of the month and hope for good news on X. For now I'm still hanging with the stable boy.

    Oh and by the way, those Miracle socks they advertise on TV, really comfortable. I have a swollen ankle, getting it checked out today, so I picked up a pair at Walmart. They do seem to energize my legs with the slight compression.

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