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All about Xeloda

Lynn1
Lynn1 Member Posts: 209
edited March 2023 in Stage IV/Metastatic Breast Cancer ONLY

I will complete my first cycle of Xeloda today (2 weeks on; one week off).  I have already noticed some signs of HFS on my feet.  Sometimes they are red and feel hot.  I've had some minor skin peeling, but not any blistering.  The heels are the worst (the most sensitive) and it is uncomfortable to walk.  I hope I get to see the onc today too so I'm going to show him and ask what to do.  At least it's my last day so I will get a week off, but I'm worried about what will happen when I start again.  I'm hoping he will agree to lower the dose -- even just a little might help.  What do you think?  Also, what should I do now that it's already started?  Thanks in advance!!

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Comments

  • stitchyphish
    stitchyphish Member Posts: 7
    edited July 2011

    Hi Lynn,

    For my first cycle, it really started to get noticeable on the last day, and then it went away really quickly after my last dose.  I assume you're keeping up with some kind of cream on the hands and feet at night and during the day?  I used bag balm at night and something from Burt's Bee's in the morning.  I saw my massage therapist and she concentrated on the hands and feet and it felt soooo good.  Maybe you can have someone else work on them?

    Unfortunately, I found out that Xeloda did not work for me after 2 cycles.  On to the next one... 

  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    Thanks! I hope mine will go away quickly too then.  I have been using Udder Cream at night. I put it on and then put socks on and sit around and watch tv, surf, read, etc. for a few hours, but I can't seem to sleep in the socks - too hot.  Is it a must to wear the socks all night?

    I can't wear a lot of lotion at work, but my hands seem ok - just the feet.

    You got results from massage? I thought that was one of the things you were supposed to avoid??

    I'm sorry you did not get better results from the Xeloda.  :(

  • apple
    apple Member Posts: 1,466
    edited July 2011

    I have found my SEs vary from cycle to cycle.. they tend to accumulate.  One thing I did find out that was kind of counter intuitive is that my hands and feet were better when I applied less product.  I don't even cream my feet anymore and only do my hands in the evening.. covering them with gloves while sleeping.  When I applied cream constantly, my hands and feet peeled like crazy.. perhaps it was just those particular cycles and the Xeloda had built up.

    Funny how we are different.. I cannot sleep without socks.. (maybe you could get some thin ones).. my feet get so cold and it's 100 here daily, lately.  I think the socks help with keeping the cream off of your sheets, and on the feet, but are not necessary

  • MustangIA
    MustangIA Member Posts: 54
    edited July 2011

    Lynn -

    Are you taking vitamin B-6?  I'm not sure if that is what is helping me or not - but other than a little tingly feeling on Friday, I have had no signs of HFS..yet.  I have been really bad about the sock/lotion thing at night - socks drive me crazy.  If you are not doing the B-6 - give it a try.  I take 100 MG with each dose of X. 

    I am enjoying my week off - I was extremely tired Friday night (last dose) and slept like 11 hours and 10 more Saturday night, but I feel great today.  I have blood work on Wed and start cycle 2 on Saturday. 

  • K-Lo
    K-Lo Member Posts: 826
    edited July 2011

    I collected all of the XELODA advice, including HFS, and pasted into a word doc. PM me if you want it. I emailed it to myself soi can look up the stuff in stores. All of this advice feels like my friends are here helping me.



    Waiting for my gloves from Archival today. So excited to have new ones they get so grungy.

    Howbdomyou get 100 mg B6? Rx?
  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    Apple:  I was afraid of that (that they would accumulate and get worse).  The peeling is not bothering me as much as the sensitivity/pain.  I now understand what everyone meant when they said it feels like you are walking on hot sidewalk. 

    Mustang:  I am taking B6 -- guess it's not working.  Maybe it's the timing or something though.  I will try taking it WITH the Xeloda.  Glad you got some sleep and feel better now.  Good luck on Cycle Two!

    Kathy:  I'm sending you a PM!  :)

  • olisad
    olisad Member Posts: 5
    edited July 2011

    HI Lynn. My friend Tanya was on Xeloda for 9 months and prior to her starting I scoured the boards on info. One thing I remember reading here was the 7 day on, 7 day off cycle was the most beneficial and the least toxic. I tried searching back in the bco archives and ended up with google. There was a study done, here is the link http://jco.ascopubs.org/content/26/11/1797.full

    and here is the info regarding that schedule. Maybe 7/7 vs. 14/7 will give you less se's, it sure did for Tanya. Hugs. Lisa

    A Novel Capecitabine Dosing Schedule

    When our mathematical method was applied to capecitabine in an animal model system, the point of maximal drug effect was estimated to occur after approximately 7 days of treatment.13 The model predicts that drug delivery beyond 7 days contributes to toxicity, with diminishing anticancer benefit. Preclinical experiments of the capecitabine 7/7 schedule in xenograft mouse models achieved a maximum-tolerated dose (MTD) 1.75-fold higher than previously achieved with the conventional schedule.21 This translated to statistically significant tumor regression and a survival benefit when compared with control.21 

  • K-Lo
    K-Lo Member Posts: 826
    edited July 2011

    Damn good work, Lisa! Ty. (woo, I'm 7/7)

  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    Thanks Lisa.  I asked him the different schedule (one week on; one off) and my onc said we were going with the reccommended schedule.  Thanks for the link.  I printed it out and will take it with me next time I see him.  Maybe I can get him to at least consider it. 

  • stitchyphish
    stitchyphish Member Posts: 7
    edited July 2011

    Interesting... I didn't know we were supposed to avoid massage.  There is some advice I don't think I'll ever avoid - going to see my massage therapist is really important to me!!

    The Burt's Bees stuff is really light, which is why I put it on during the day.  I also found during radiation that the Aquaphor was actually making my symptoms worse, so I used an "after sun" lotion from Burt's Bees, and I got a lot less reddening of the skin.

    I really hope you find some relief.  I wonder if soaking your feet in cold water would help. 

  • dreamwriter
    dreamwriter Member Posts: 678
    edited July 2011

    I am on the 14/7 schedule.  So far I have not had any SEs (knock wood).  I have had 5 cycles and they appear to be working.  My plura and water around my heart have diminished.  My liver mets stayed the same.  My bone mets stayed the same.  However we are looking at the skull mets and possible WBR.  That scasres me silly.

  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    stichyphish:  My understanding was any rubbing on the hands or feet would make it worse.  Massage in other places is just fine.  I hope to have a body massage sometime soon.  It really helps relax me.   So the lotion you use during the day is a Burt's Bees After Sun Lotion?

    Dream:  I'm sorry. I can imagine how frightening that is.  Please keep us all posted on what they decide.

  • apple
    apple Member Posts: 1,466
    edited July 2011

    i guess i conclude that every cycle is different.. for me the worst effect has been diarrhea in week 3.  i really do get fatigued and tired.  I wear thick socks and supportive tennis shoes, unless 'going out'.  seems to work pretty good for me.

    good luck Dreamwriter..

  • steelrose
    steelrose Member Posts: 318
    edited July 2011

    Lynn...

    I hope you are able to see your oncologist today and show him your feet. It was accumlative for me as well and I didn't tell my oncologist because I thought I had to tough it out! Stupid me! My dose was reduced twice, mainly because of hand/foot side effects. I meant to reply to your other post re. your concern about the high dose he prescribed for you. We are the same size and I was initially prescribed the same, finally lowered to 1000 mg twice a day. It scared me because I thought it wouldn't work at this low dose. But it surely did work! Just wanted you to know that... they often start high and adjust as needed. 

    Wishing you the best... I HATE HAND/ FOOT!!!!

    xoxo

    Rose.

  • olisad
    olisad Member Posts: 5
    edited July 2011

    ooh and i remembered an article i read a few months back. worth reading and maybe even talking about. it is a phase 2 trial xeloda vs 5-fu + eniluracil + leucovorin. here is the link http://www.medicalnewstoday.com/releases/224062.php

    and here is a quick 1,2,3

    About Eniluracil/5-FU/leucovorin 

    Eniluracil is a mechanism-based inactivator of DPD, the enzyme that rapidly breaks down 5-FU. Accordingly, eniluracil increases the 5-FU elimination half-life from about 15 minutes to 5 hours and enables 5-FU to be administered orally, making it 100% orally bioavailable. In addition, eniluracil prevents the formation of α-fluoro-β-alanine (F-Bal), the 5-FU-breakdown product. F-Bal appears to cause hand-foot syndrome, neurotoxicity, and also decreases the antitumor activity of 5-FU in laboratory animals. Furthermore, because DPD is present in variable levels, the highly variable and nonlinear pharmacokinetics of 5-FU become predictable and linear when DPD is inactivated by eniluracil in cancer patients.  

  • MJLToday
    MJLToday Member Posts: 42
    edited July 2011

    Definitely ask about the 7/7/7/7 option.  I did OK on that, but suffered greatly on the 14/7 option.  My SEs tended to start on day 8 or 9, so stopping on day 7 helped prevent that.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited July 2011

    On my 2nd session and no SE cept for nauseous and tired!!

  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    I saw the onc today and did show him my feet. Today was my last day out of the 14 and so he told me not to take the evening dose and start my week off a little early.  He said we'd see how they look next week and then decide how to proceed.  He did say a dose reduction might be in order (and that might help with my headaches too!)  So I've printed out the information on the 7/7 schedule and will ask him about that and see what he says.  Will let you know....

    Also, I've switched from Udder Cream to Working Hands. Used it for the 1st time last night and I think I did see some improvement (where I saw none with the UC, but it didn't get worse either).  Maybe this will help clear it up faster!  

  • K-Lo
    K-Lo Member Posts: 826
    edited July 2011

    I like working hands too. They only had 3.4 oz at lowes. I'll see if I can order a bigger container.

  • Suze35
    Suze35 Member Posts: 559
    edited July 2011

    Lynn - was the Udder Cream you were using the one with urea in it? That is the only version that I use, it helped tremendously with my radiation, and I've been using it on my hands/feet since I started the Xeloda.



    I've only done one cycle, and have had very mild tingling. My doctor said we might UP my dose. Wh-what? She said she likes to see mild SEs, but a little more than I've been having, to know it's working. Her words, "you look too good to be on Xeloda." Yea, tell that to my headaches and fatigue!!



    I hope you have less SEs next cycle, or that your doctor changes up your regimen!

  • Lynn1
    Lynn1 Member Posts: 209
    edited July 2011

    Suze35:  I'm not not sure about the urea. I'll have to look when I get home tonight.  Is that version better than the "regular" one?   I'm sorry about your headaches and fatigue.  What do you use for headaches?  I guess I'm going to start trying them all to see which one works best/fastest.  So far my fatigue has not been TOO bad. I just hope it doesn't get progressively worse with each treatment.

    So this morning my feet are soooo sore.  It hurts to walk!!  My heels feel tight and every step is painful.  I wore some Keds to work today because I just couldn't do the regular shoe/sandals. They still don't have a thick sole though. It's like I can feel every pebble I step on.  I brought some regular athletic shoes with me, which have a thicker sole, and some thicker white cotton socks. I think they might feel better, but that is NOT in our dress code here, so we shall see what I can get away with.

    What can I do to make them feel better?!  Sorry, I'm particularly whiney this morning. This sucks!!  Frown

    Onc said they would probably get worse too before they get better. Can anyone share their experience on how long it took for them to feel better? 

    Thanks!

  • K-Lo
    K-Lo Member Posts: 826
    edited July 2011

    I ordered Working Hands and Working Feet on Amazon. Slightly better pricing. Maybe try the Working Feet? Try Walgreens. My hands were shredded from Doxil. Avoiding friction seemed to be key. I bet cotton socks with any shoe will feel better.

  • scuttlers
    scuttlers Member Posts: 149
    edited July 2011

    The O'Keefe's Working Hands is a miracle. (Looks like a little green hockie puck. Lowe's or Home Depot.)

  • Suze35
    Suze35 Member Posts: 559
    edited July 2011

    Lynn, the Udder Cream with urea is "Udderly Smooth Extra Care with Urea," it is different from the normal one they give you in the Xeloda pack, and it seems to be much better for healing.  It worked wonders for me when I switched to it during radiation from Jeans Cream.  But I see there are lots of kudos for the Working Hands, so it may be worth it to give that a try.

    I've been using Fioricet for my headaches when I feel like they might be heading towards a migraine, but I am trying to go easy on it because it is physically addictive - it is a combo of caffeine, aceteminophin and barbituates.  It works fantastic, but I've already got a physical addiction to Ativan that I'm trying to break, I don't need another one!!  My doctor also said I could use Ibuprofin occasionally, which I do with some Coke sometimes.  Most days I just deal Frown.  I'm in my off week now, so I'm hoping to get a few days of energy and no headache.

  • scuttlers
    scuttlers Member Posts: 149
    edited July 2011

    Am I the only "oldie"who envisioned white powder and not brown liquid with the last post?

  • reesie
    reesie Member Posts: 413
    edited July 2011

    scuttlers, I did have to think twice when I read that lol

  • Suze35
    Suze35 Member Posts: 559
    edited July 2011
    Surprised LOL!!  Maybe I should fix that!!
  • scuttlers
    scuttlers Member Posts: 149
    edited July 2011

    Oh come on now, it doesn't make sense when you say Coca Cola! LOL

  • scuttlers
    scuttlers Member Posts: 149
    edited July 2011

    Oh come on now, it doesn't make sense when you say Coca Cola! LOL

  • scuttlers
    scuttlers Member Posts: 149
    edited July 2011

    Deleted for double post, nothing interesting....

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