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All about Xeloda

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Comments

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Good luck for your appt tomorrow, Suz.



    Singletona - Just a bit snuffly, nothing major so no need to worry. But thank you!



    First day off of cycle 2 for me... Yay!!! Three weeks today, I get my first CT scan to see how the X is working for me... Fingers crossed for all of us!



    Take care, Angelfalls xx

  • suz45
    suz45 Member Posts: 85
    edited February 2012

    Thanks Angelfalls, hoping your scans are even better than what you want!

    Hugs Suz

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Thank you! Loving the new photo, btw!!

  • hunkydory
    hunkydory Member Posts: 722
    edited February 2012

    Hope everyone is feeling as good as one can. I finished my first session of 7/7.  I have feet I can't walk on, but so far the hands are ok.  Nails are so long I am afraid I am starting to look like eddie scissorhands.  I did a good manicure today however.  Now I just hope my hands stay clear.  My onc wouldnt let me start my next cycle again until my feet get a bit better.  I had every SE except poop soup as someone called it.  I take my little orange pills (senekot) for constipation.  I am on pain killers so thats another reason for the senekot.  I wanted to thank all you girls for your posts.  It really helps us newbies.  I am finding this chemo to be really rough. 

    I am on a lead for financial aid.  I will let you know how that turns out if and when I get approved. 

    I cant rememer who (Marybe)? maybe, talking about using the dremel tool.  Damn that makes me shudder. LOL!  Whatever ya need to do to walk I suppose.  Also my onc lowered my dose to 1500mg am and 1500mg pm.  I hope that helps me some. Is anyone on this dose?  Please excuse if it has been mentioned as my memory is shot.   

    Thanks again....love the thread.  I read it just hoping to hear of something good to help with all these SE's.  Best wishes to all of you.  HunkyDory

  • seattle85
    seattle85 Member Posts: 2
    edited February 2012

    Hello,  I would be interested in the Xeloda advice.  My email is is : mrjade2003@yahoo.com

    I've been on Xeloda for about a month.

     Thanks

    Erika

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    I have a question, Divas... What about dyeing our hair when we're on X? I really need to book an appt. with my hairdresser (nice change from the onc!!!), and am wondering whether to get my roots and grey coloured. I know that hair thinning can be one of the SEs, so don't want to do anything that might contribute to that. Vain and petty in the overall scheme of things and when so many of you are going through so much, I know, but I'd appreciate some info, please. Have a great weekend, Angelfalls xx

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

    Angel I've been on it since July. Hair is normal. If I got color I'd get something "natural" like Aveda. Seems weird to saturate my scalp with something that smells like.turpentine....

  • sueper13
    sueper13 Member Posts: 360
    edited February 2012

    HunkyD,

    I am on 1000mg/.morning 1500mg/evening, 7 on/7 off.  Been on it since January 6th.  Feet and hands okay except for slight neuropathy feeling in toes and ends of fingers.   NAUSEA has been horrible for me, last week I had lots of nausea ON MY WEEK OFF!!!!

    Please pray for clean scans, I am having them on the 17th.

    Much love

    Sue

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited February 2012

    Angelfalls - I did have my hair highlighted a month ago and I have been on X since September, I had no problems with it so I will probably have it colored the next time.  I had read on another site  that quite a few women did have their hair colored and it did not bother them.  I was willing to take the risk and am glad I did it, it makes me feel better just being able to cover some of the gray, it was not terrible but somehow it just makes me feel better to do something as simple as that.

    Sueper13 - I take 1500 mg in the morning and 1500 mg in the evening for 7 days on and 7 off.  I also have the problem with nausea even on the off week.  I take Zofran the whole 7 days on and do it on a regular basis because if I do not I start feeling really nauseated so I am very careful to stay on it every 6 hours and then I end up taking the Zofran for about 4 or 5 days after I finish and it has helped.  I also take Promethazine when the Zofran does not seem to do it, which happens once and a while and the Prometh can be used along with the Zofran.  My onco told me to take the Zofran starting the day or 2 before I start my cycle and take it for as long as needed after.  I asked the pharmacist if I could take it everyday without any problems and he said yes take it everyday if needed.  I hope some of this helps. 

    The only side effects I seem to have are nausea, which starts right away and foot problems which starts about the 3rd or 4th day of my on cycle and stick around for about 3 or 4 days after I finish.  My fingers are kind of numb on the ends and the doctors say I do have "Xeloda hands", they can tell by the looks of them.  For the most part I am lucky that is about all of it except for some constipation from the X and Zofran but that is ok, I can deal with that.  I had a PET scan in December and it appears it is working.  My TMs are going down so that is a plus and I will have a Bone and CT scan on March 7 to see how things are going. 

  • lilylady
    lilylady Member Posts: 478
    edited February 2012

      This is Day 7 of my first cycle and the only thing that has happened is the Big D started this morning. A little low grade nausea that passes after an hour or so after the X dose is the only other thing. greasing the feet up as often as I can but ditched the Bag Balm-hated the smell . I love my fresh sheets and I hated when I pulled the covers back that it was the first thng I smelled.

       If I was on the 7 on/7 off I think I would have gotten off scot-free. So far I am on the 14 day thing. I see my guy on Tuesday and will ask him his thoughts on it. I did print out a link someone posted about the 7 day dose. I am on 2000mg for both my daily doses plus the 5 Tykerb also.

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

    Sue.....i wrote a special note to the scan fairy ...... think good thoughts darlin.

  • hunkydory
    hunkydory Member Posts: 722
    edited February 2012

    Good morning.  I am waiting for Mr. Sandman to show up but he must be on the east coast somewhere still.  It is 2:14 mountain time.  I just took an Ativan so hope it kicks in quick.

    Sue13, I have you in my prayers.  There are so many of us that are either waiting for scans, count drops, etc. it makes for a long prayer list, but I don't work so I have the time to keep you all in my thoughts.  I go in Tuesday to see if I get the OK to resume Wednesday on this lower dose .  I thought I was the only one on this low dosinf schedule and I am worried that it won't help, yet I really nead to be able to walk.  I hope all you girls with the severe nausea can find some relief.  I have been really trying to keep mine under control with the meds like Jeanieb, and I think it is helping.  I too was worried about highlighting my hair.  I did rgw foil highlights throughout Navelbine and it was fine, so hope for the same good luck this time.  Hugs to all.  HunkyDory

  • plumblossom
    plumblossom Member Posts: 22
    edited February 2012

    Hi all,

    Has anybody got bleeding nose while on Xeloda? This is my second cycle. I got a bit bleeding nose, not very bad, and my platelet is going down after first cycle. Pbsom x

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

    Plumb I am off X now (didn't work) but when I was on 14/7 I did have nose bleeds!!

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

    YES Plumb. As I just took last dose yesterday I can speak in the present tense and say it causes bloody noses. Onc. Doctor yawns.

    My primary care doc figured out that blood behind my nose was contributing to the ever-present cough. He gave me flucasone to clear the passages and what a difference.

  • sueopp
    sueopp Member Posts: 238
    edited February 2012

    Yup, xeloda causes nose bleeds.  I bought pretty (but cheap) handkerchiefs so I could be ladylike when I bled in public - yuck!  SUE

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

    Oh sue have you ever checked mirror to find you've been walking around with a bloody nostril?

  • sueopp
    sueopp Member Posts: 238
    edited February 2012

    Funny you should ask K - happened last week.  I wouldn't have known except my 7 year old grandaughter was giggling behind her hand.  She thought that the old lady just needed to blow her nose!  I mean geeeez!  SUE

  • Treso
    Treso Member Posts: 68
    edited February 2012

    Plumblossom:  Funny story...while getting a bed delivered and put together for my mom, the delivery guy needed some help.  While I was helping him, my nose sprouted.  I kept a tissues plastered against my nose for the next 1/2 hour.  He then proceeded to ask me out!  I had nice thin hair, was in sweaty work clothes and my nose was bleeding and all I could think of was, "how desperate IS this guy?"  The other time that was just as bad was at a water park while on vacation with my sister and nieces during lunch.  Fun times!  (And really appetizing-they all just took it in stride, god bless 'em.)  It happened a number of times as bad as those times while I was on X but did get better after several months.

  • plumblossom
    plumblossom Member Posts: 22
    edited February 2012
    Thanks for all your post. Now I konw it's 'Normal'Undecided. When I had Avasin, I drink the water boiled from red skin peanut, it works for increasing my platelets counter. Now I start to drink it again, let's see what the counter is in next test.
  • lilylady
    lilylady Member Posts: 478
    edited February 2012

    I get mine first thing in the morning when I jump out of bed. Tried a humidifier thinking it was just dry air-guess not.

     I am getting brown age spot looking things on my face-not really a rash-mostly around my mouth and chin-anybody else get these and are they going to go away? 11 days into my first cycle.

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

    i've been off Xeloda for about a month now.. and the hand foot syndrome has about completely dissipated.. the 13 months were worth it, every moment is valuable now, but I am super happy to have my hands back, supple and feeling good... and not forever goopy.

    not giving up my fluffy slippers tho.  neveh!

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Hello everyone!



    Hope you're all doing ok. Started cycle 3 today and in 2 weeks I get my first scan to see whether the peachy pills are working their magic for me... Fingers crossed!



    Anyway, I saw my onc's registrar yesterday who said that if all's going well, I would probably have a break from chemo after about 6 or 8 cycles. My onc hadn't mentioned this to me and I was just wondering if anybody else has had a break like this?



    Take care, Angelfalls xx

  • sueper13
    sueper13 Member Posts: 360
    edited February 2012

    Angel, I am getting scans on Friday.....then promptly getting on an airplane to spend the weekend in Montreal with my son, daughter-in-law, and new grandson, so when i get home Sunday night I will probably only have to wait for the results until Monday afternoon (or Tuesday morning).   I only had the single met to my sternum, and that was removed but not with clean margins in the bone, so the scans will just mean nothing new has decided to show up, hopefully.   REALLY hoping that's the case.  I see the onc again on the 24th, and by then will have done 5 rounds--but only 3 rounds that were 2 weeks.  Originally I was to do six rounds of two on one off...I don't know how switching to one week on one week off will affect how many rounds I will have to do. I am ready to be done, but want to do all I should. I have pretty bad nausea with the Xeloda and now am starting to have bone pain. (lower back and all the way down to my toes). No HFS yet, feet are numb and tingly ish but not red or painful or peeling.  Low energy as well.  Will let you know what the onc says about how many more. 

    Take GOOD care,

    Sue

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Awww, thanks Sue. Sounds like that's the best way to wait for your results - have a great weekend with your family!

    I think they're looking for shrinkage of the tumours which popped up behind my sternum as an indicator of how X is working for me. Plus my lymph nodes lit up on the PET scan right the way through the chain up to my neck, so the idea is to keep it all stable or hopefully even get regression. So I don't really understand the idea of a break... Maybe the registrar just got it wrong! Or they're thinking 6 to 8 rounds will get me back to NED!!! Well, we can all live in hope, right! ;0)

    And talking of hope, here's hoping for good news results for all of us, Angelfalls xx

  • iluv3j
    iluv3j Member Posts: 6
    edited February 2012

    Hi all.



    I have been following all these posts since November when my mom was dx with bone mets to multiple areas specifically her spine all the way down to hips and pelvis, and shoulders too. She is 56 years old and means the world to us. Cannot imagine life without her. We were caught off guard with the recurrence and devastated at first but now we are taking it day by day with lots of ups and downs of course.



    Mom is ER/PR + and was originally dx with stage 2 in 2007 had a mastectomy , chemo and was on tamoxifen the whole time . Her first treatment since recurrence is xeloda 3000mg per day. Her only real SEs are the dreaded HFS with dryness and brown spots everywhere. She recently had radiation to her sacrum to relieve pain and it has helped tremendously. She has been looking and feeling great for weeks now and has had such a positive attitude! She had her first scan since starting treatment this past Monday and we find out if it's working at tomorrows visit with her onc. We are so hoping its working. Please keep us in your thoughts and prayers. I pray for you all all the time too!



    Hugs,

    Em

  • diza
    diza Member Posts: 4
    edited February 2012

    Guys, 

     My mom had a recurrence, now stage IV with bone mets. Doctor prescribed Tykerb and Xeloda. We're thinking of taking those when she gets stronger (she has awful gum problems which have been causing her pain, and loss of appetite!) She is weak but now gaining strength slowly everyday.

     My question is: Have you guys taken Xeloda alone and with positive results?  I'm looking at a future where we might not get to afford Tykerb, along with Zometa and Xeloda so maybe we would be sticking with Xeloda which is cheaper, but that won't be til for a long time, i hope. We're looking at getting some medical assistance.

     Thanks for your help and here's to NED forever and ever for all of us. 

  • iluv3j
    iluv3j Member Posts: 6
    edited February 2012

    Update. Went to see moms onc today and got great news after just three months on xeloda! Scans showed all bone mets diminished in size and number! Our onc was so pleased to tell us. We are so pleased. What a great start. My mom complained of Hfs and her onc said she could lower it to 2xday for a total of 2000mg per day but we all decided it was best to try to stay on 3000mg as long as she can tolerate it since its working so well.



    Just thought id update you to Hopefully give you some hope with Xeloda

    Wishing you all the best. 😉



    Em

  • Angelfalls
    Angelfalls Member Posts: 83
    edited February 2012

    Great news, Em! This is just what we love to hear! Hope you're going to do something nice this weekend to celebrate with your mum... Enjoy the good times and thank you so much for sharing, Angelfalls xx

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

    Xeloda worked GREAT for me for quite a while.. i did take a 2 week break mid way.

    best of luck all.

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