Take our poll: How does Breast Cancer Awareness Month make you feel?
Donate to Breastcancer.org when you checkout at Walgreens in October. Learn more about our Walgreens collaboration.
Join us for a Special Meetup: The Benefits of Exercise for Anyone With Breast Cancer, Oct. 16, 2024 at 2pm ET. Learn more and register here.

All about Xeloda

1…101102104106107…465

Comments

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    So sorry to hear that Karen.....

    I'm not sure if it's your first scan since starting Xeloda, but my first one showed progression & the second showed stable in the bones & shrinkage of one of the liver mets! Not sure if that helps but thought I'd share.....



    Having said that, I'm not feeling confident about the next one as I seem to have a lot more bone pain....:(



    Hugs & take care.



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited June 2013

    OBXK, So sorry to hear of your progression.  I truly understand how that feels.  Another member on this board had progression on her first scan, but they gave it more time and then she later became stable.  Wonder if that is an option for you?

    My first scan is on Monday.

  • bhd1
    bhd1 Member Posts: 173
    edited June 2013

    Formygirls I hope this combo works for a long long time

  • OBXK
    OBXK Member Posts: 689
    edited June 2013

    Hummm... My MO said to stop the Xeloda - I had 5 rounds.

  • SyrMom
    SyrMom Member Posts: 575
    edited June 2013

    Kazzie61, when your first scan showed progression and second one not, what was the timing between scans and how many rounds had you had?  Trying to mentally prepare myself for Monday!!

    Tumor markers went up from last time.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Syrmom.....my first scan which showed progression was after 3 cycles (I'm on 14/7) & the second scan which showed regression was 6 weeks later after the 5th cycle.

    I have heard it can take a few months to show results....

    How many cycles have you had?

    Good luck for Monday.



    Karen xxx

  • SyrMom
    SyrMom Member Posts: 575
    edited June 2013

    Well, my cycles have been messed up.  I was suppose to be 14/7, then right away at day 8 got switched to reduced dose and 7/7 for 1 month.  Now trying to go to the 14/7 cycle again.  This will make 4, but at 7/7.  I'm on day 10, feet screaming and hands tender only.  Trying real hard to hold out without getting toxic!  I don't want to give up on this med, just worried what ONC may think ...

  • Deyla7641
    Deyla7641 Member Posts: 53
    edited June 2013

    Hi everyone Hope all are well. MO is stopping the Xeloda for my next cycle and pushing back the Ixempra for a week. The side effects were just getting awful. My hands and feet were peeling and red. I started getting mouth sores too so they wanted to give me a break from the Xeloda and just keep me on Ixempra for the next cycle. The neuropathy is getting pretty bad too and they just started me on Gabapentin. Anyone else on this med? Does it help? Thanks ladies!



    Deyla

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2013

    Hugs going out to all of you who are having a hard time with Xeloda. I truely hope that the SE get better. I konw that reducing my dose by 1 pill a day has made it possible for me to be on my feet again.

    OBXK and Syrmom- thinking of you and wishing you all the best. I am hopeful that things turn around for  you soon.  

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    Hi All, Want to add to the conversatoin that I also had progression after 3 rounds of Xeloda, we are doing more rounds though (3 more altogether, I'm on my 6th round now) and doing another scan in a week, which would be 8 weeks total from my last scan. I'll keep you posted on that. I too have had horrendous SE in feet and hands the last 3 rounds so this round we are trying 7/7 to see if it helps.  Also have exploseive big D with some bright red blood. Hope its not too much info. Ii don't think the blood was anything but irritation due to the frequency since its gone away for the time being.  The D was as bad as the feet. have to always have a bathroom close by for emergencies.  But all in all, I too hope I can stay on this med. I know I can handle these SE's, I just have to keep tweaking things to make it better.  Can anyone tell me how Immodium D has worked for you or recommend something else that has helped.  Thanks, Linda

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Reporting in on first scan results; I was on 7/7 x 3 (one dose reduction) and trying for 14/7, now on day 12, but have been told to stop and go back to 7/7.  Scan reports not stable, some growth in liver mets and minimal in bone mets, but no new areas clearly defined.  Guess I need to be grateful for no new areas.  Some areas iffy, appearing to be cysts.  Next scan in 3 mo unless new symptoms arise.  Onc was telling me at Sloan Kettering they often just go to the 7/7 right away due to the side effects worsening on 14/7.  Interesting.  An NP told me there was a study out that says 7/7 is as effective as 14/7.  Just sharing what I learn ... Smile

    Rangermom, sorry to hear your struggles with this med, hope the 7/7 calms things down.  No Big D yet, but I've been warned.

  • chefmiche
    chefmiche Member Posts: 25
    edited July 2013

    ladies, I've read many of you have complained of the SE of nausia, but I was wondering, have any of you thrown up?  I didn't have nausia, just threw up 3 mornings last week 1-2 hours after taking meds after eating breakfast.  It didn't happen today, so maybe it was a fluke...just wondering does this medicine build up in our system and becomes worse as we take it longer?  Like maybe I've been lucky so far with no SE and now the meds have built up in my system...??  There are so many pages here to read, I may of missed someone else experiencing the same...

  • formygirls
    formygirls Member Posts: 154
    edited July 2013

    Chefmiche,

    I throw up often on Xeloda. I take zofran every 8 hours but still throw up 3-4 times a week.

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    I get very nauseated and Compazine helps me with that. I haven't thrown up, just got close. It happens several times a week for me.

  • maggiethecat
    maggiethecat Member Posts: 9
    edited July 2013

    SyrMon,

    Thanks for the reply, I was discussing TDM-1 approved by FDA with my onc, asked him if I can get the treatment in Canada, he said that Health Canada has not approved the use of this wonder drug, so he has to request the drug company using compassionate reason because all other treatment failed, still has to jump through Health Canada hurdles, will be going for MRI this evening, suspected brain mets, I have major headaches and is off balance while I am walking, will know the result by next week, not looking forward to it.

    Onc put me back on steroids just to prepare me if I needed radiation of the brain tumors, so much to consider, and it is not easy, I thank you very much for the support and information posted, always good to talk to some some who understands. Very much appreciated.

    Hugs.

  • OBXK
    OBXK Member Posts: 689
    edited July 2013

    Xeloda did not work for me, so I am trying to get in this trial. I meet with the researcher Monday. Thought I'd share.



    http://www.huffingtonpost.com/2013/05/16/mpdl3280a-immunotherapy-drug-cancer_n_3281876.html

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2013

    anyone else get a very sensitive scalp? I could barely brush my hair lately. And I have all sorts of scabs.  It went away after a few days but it certainly hurt for a few.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Last round I had a very red scalp, my hairdresser noticed it and of course I got real concerned if that meant I would lose my hair.  Not as bad (so far) this time.  Instead, my right hand is super sensitive (I'm right handed of course).  No break in skin, but hurts like #@!

    Many of the previous posts report symptoms changing all the time with each round.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    OBXK, hope you get into the trial, sounds promising.  Pls. keep us posted.  Might be interested myself for future.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    New increasing problem ... calf pain!!  Anyone out there found anything that helps??? Never in my entire life have I had calf pain. This is very frustrating.  Even had a doppler to rule out blood clots, so it appears to be all S/E related to the Xeloda.  When I'm on the Xeloda the feet are too tender to walk, when off, I'm able to walk short distances after days 3 off.  This is the only exercise I do; now it's difficult because of the calf pain!!  What's even stranger is the pain can be intense and hours later just disappears, very weird.  Some nights it keeps me awake.  I've done some gentle stretches by flexing feet, don't know what else to do, ugh!

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Syrmom.....I have the same issue with my calves!! It keeps me awake for hours at night but I don't seem to get it during the day.

    I have my onc appointment on Thursday so will see what he has to say about it.

    As you say, it is really intense & then just goes away.

    Will let you know if the onc has a solution.



    Karen x

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Kazzie 61 ... Thank you.  Drives me crazy.  However, I do get it during the day sometimes, makes it hard to walk.  I limp like crazy and then without warning, it goes away!!  Very weird.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2013

    Syrmom- you might want to try a reduciton in dose of your Xeloda. I got to the point where I couldn't walk either and I talked to my MO. I tool an extra week off ( i am on 14 on 7 off) and then lowered my dose by one pill a day.  Not a huge reduction. My feel still have hand foot but I am able to walk again.  Maybe the same could work for you.

    I too have had bad calf cramps.  I also feel like I have restless leg syndrome often at night.  Guess I can add those to my list of SE of Xeloda.

    Hang in there.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Thanks Leftfoot.  I've been thinking about that.  What's holding me back from asking is I already have had 1 reduction and now on 7/7 because of side effects.  Afraid if I go too low too fast it will do me no good.  First scan showed no new areas, but some existing ones had slightly incr in size, so I'm freaked this may not work ... think the next scan will reveal for sure.  Some ladies on this forum report it can take a while to show positive results. So taking it day by day.  What's confusing to me is the drug company clearly states (in the education information they include & drug insert) to stop the drug and adj. dose with the severity of symptoms we discuss here.  Must be ea Onc has their own way of doing things.  

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited July 2013

    OBXK -

    I'm sorry that Xeloda hasn't given you positive results. But the trial that you are going to join may make up for Xeloda's shortcomings and blow past what you could have expected on Xeloda. I'm very excited for you. My onc and I had a very short discussion of PD-1 and PD-L1. It is on his radar screen, at least for other cancers at this time, but since I'm BRCA 2+ the ABT-888 trial is a better fit for me at this time.



    It sounds like a very promising treatment and I hope they find the results with breast cancer are as good as the what they are seeing with the other solid tumor cancers. The idea of utilizing the body's immune system makes so much sense. Please keep us informed!

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited July 2013

    SyrMom -

    Has your potassium been checked? Low levels cause cramping. Maybe try adding bananas to your diet and see if this helps. I've had cramping on and off throughout all my treatments so usually have bananas on hand as part of my breakfast. Need to get some at my next visit to the store.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Yes, potassium o.k., however, think I will add an extra banana anyways, can't hurt!  Thanks for the reminder.

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited July 2013

    That sums it up for me, too. That it can't hurt. I was getting bad cramps on tamoxifen even though my levels were OK. I found some organic bananas that had a really good flavor -- much better than the Dole brand. Been hooked on them ever since.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Another question ... anyone having probl. with the eyes watering too much?  If so, any way to control it?

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    SyrMOm - Today I noticed calf cramping that makes it hard to walk, very tender. I'm watching the advice here on that.

    All - I have another question to ask the group, and I'm sorry if it is tmi - but not sure what to do about this.  I have the really big D at the end of my 2 weeks on and the last month it also had bright red bleeding. Not a lot, just some spotting.  After being off for the week, the big D went away and so did the spotting.  However, I'm now on 7/7 and again at the end of the 7 on, the big D is back with small bright red spotting.  I'm thinking this is just irritation and is nothing since it goes away when the D is gone.  Is this a normal SE or should I tell the onc?  This is 2 rounds in a row. Thanks for your input

    Linda

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.