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All about Xeloda

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Comments

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012

    It's interesting that I still feel perfectly fine, even though the scan didn't look good and my tumor markers have gone up a bit.  If I hadn't been so insistent on checking tumor markers, I'd be blissfully living life thinking all is good and I am NED.  Those will get re-tested next Wednesday when I see my local MO.  I'm still waiting for the final scan report...I'm ready to trek off to the hospital and request a copy.  Maybe there will be some good news somewhere in the midst of all this.

  • dormouse72
    dormouse72 Member Posts: 21
    edited August 2012

    Waiting for the herceptin but had to share...My onc said the best words I've ever heard - "What side was your lesion on again?"

    She had to hunt for my lump.  It's still there but significantly smaller.  She also said "Your tumor markers are normal - not that they were very elevated before but down is good".

    She said I dont have to see her for SIX WEEKS!!!  I will just have to call to order my pills and take them as usual. I still will get the herceptin in early September but I am able to go on Labor Day (which is the day we get back from our cruise).  So I can step off the ship and go right for my herceptin without having to take another day off that week.  I wasn't looking forward to being out for a week and then having to take another day off my first week back. Doubly good since it is the first week of school - with a HS senior, a HS freshman, and a 5th grader, I'll be glad to be able to concentrate on them that week.

    Do I REALLY have six weeks of life almost entirely uninterrupted by doctor visits in front of me???  

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012

    Woohoo Dormouse!  Glad to hear that X is working so well for you!  And six weeks uninterrupted - awesome!  Enjoy!

    Unfortunately, my news is not so good.  i got the final report and X hasn't really worked at all, I had lots of progression and the hunt is on for the right clinical trial.  I haven't had a platinum drug, either, so I may go on a trial that involves one of those.  I have an appointment next Wednesday and hopefully my team of oncologists will have a plan in place.

    Good luck to everyone!  Enjoy those planned vacations, enjoy every minute!!!

  • RobinNY
    RobinNY Member Posts: 136
    edited August 2012

    Oh Luv, so sorry to hear that.  Good luck with your next drug....may it be exactly what you need.

    Hugs!

    Robin 

  • seamstress
    seamstress Member Posts: 22
    edited August 2012

    LuvRVing....bummer....I don't understand these drugs.  You'd think if a drug is a good drug it would work for everyone the same.  You're right with your advice to enjoy every minute.  I'm trying to plan a little fall trip.  Just close around home somewhere.

  • Frapp
    Frapp Member Posts: 343
    edited August 2012

    Luv, so sorry to hear that x let you down. May the new plan introduce you to Reggie and then his BFF Ned. Let us know what the new plan is and keep in touch.

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2012

    So sorry X wasn't the fix. I also wish we could know upfront whether something would work for us or not.



    I've been on a two week break to get my feet and hands to settle down. Tomorrow morning it's time to stare at the pills again. So far I'm stable and hope that I'll at least stay that way until after my trip in late October. In fact I think I'll push to avoid any scan until after the cruise. Lovely trip down de-Nile.

  • seamstress
    seamstress Member Posts: 22
    edited August 2012

    Good thinking, Chickadee.  I hear de-Nile is beautiful this time of year....lol.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited August 2012

    Hope the next one works better, Michelle.

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited August 2012

    Luv - Sorry to hear the X has failed you.  I hope you get a great new tx that does wonders for you!!! 

  • bhd1
    bhd1 Member Posts: 173
    edited August 2012

    seamstress and cynthia , congrats on the good scans.  i so hope i can join you in good results for a long time to come.  aug 23 i have pet scan.   michelle keep in touch.  i hope yourext tx is a big success and you are able to stay w it for a long long time.    this is so tough.   let's keep our faith

  • dbla
    dbla Member Posts: 15
    edited August 2012

    My dosage is 1000 mg in the am and 1000mg in the pm, on 5 days, off on the weekends. Anyone else on this protocol? 

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2012

    Now that's a new one. I'm on 1500mg x 2. 7 days on, 7 days off.

  • sueper13
    sueper13 Member Posts: 360
    edited August 2012

    Hey, divas, just checking in.  Glad to read of good scans and hopefully good new plans ((((LUVRVing)))All is well so far and I have my first set of scans after treatment next week!  EEEK!  Always drives me back here! Well, first dental appt. since Zometa and I have a cavity!  Haven't had a cavity in years! (WELCOME TO YOUR NEW NORMAL)....NOT happy! (Two things are weirdly important to me--good dental checkups and keeping my library record clean.  I cannot explain this.)

    So I will let you know about the scans!  Hope everyone  has a good week!

    Love

    Sue 

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012

    Well, I am officially "off" Xeloda and the next treatment is TBD.  I saw my local MO today and she is deferring to my MO at Dana Farber in Boston.  I'm hoping for this clinical trial:

    http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2410

    Hopefully, I will qualify and it will be a good drug for me.  Otherwise, I think carboplatin with gemzar stacks up as "plan b". 

    Good luck, everyone!  And thank you all for your love and support!

  • Frapp
    Frapp Member Posts: 343
    edited August 2012

    Wishing you the best, Michelle. Hope the trial kicks it

  • banjobanjo
    banjobanjo Member Posts: 187
    edited August 2012

    Whichever gets chosen, hope it works for you, Michelle.  Good luck.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012

    Thanks, ladies.  My appointment is late Friday afternoon so I'll soon know what's next.

  • plumblossom
    plumblossom Member Posts: 22
    edited August 2012

    Hi ladies, I started Xeloda from January. It works so well. The trouble is my bilirubin was out of range from April, and it keeps going up each cycle. My doctor doesn't concern much because it is not too high. This time it is 28 (0-20) normal. Is anbody has this problem? 

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012

    I'll be going on a clinical trial - ARQ-197, a drug that has been tested quite a bit for lung cancer and is now in Phase II testing for Metastatic Triple Negative BC.  It's an oral med, and from what I've read it should have minimal impact on QOL.  I'm pretty happy about it. 

    So good luck ladies, I hope X kicks everyone's BC to the curb!  May you all have a nice long ride with it!

  • Frapp
    Frapp Member Posts: 343
    edited August 2012

    Good luck with the new treatment Michelle.

  • seamstress
    seamstress Member Posts: 22
    edited August 2012

    Best wishes to you, LuvRVing.  Glad to hear about the expected good QoL.

    Hello Plumblossom....I've not had that exact problem, but have had a scan show that I had fatty liver.  The doctor reduced the Xeloda dose and told me to lose a few pounds.  After losing 8 pounds he told me I'm at a good normal weight and to stop losing.  The fatty liver went away.  It could've been either from the excess weight or the Xeloda.

    I have two mouthsores this weekend.  Odd, because I haven't had any for at least half a year.  Also my hair has thinned quite a bit in these 10 months that I've been on this drug.

  • gail5
    gail5 Member Posts: 125
    edited August 2012

    This is my first post on this site as wasn't sure how long I'd last on this drug. I'm on my 3rd cycle of Xeloda. I have skin mets plus still have primary BC tumours as the skin mets developed while I was undergoing treatment to shrink the primary BC. I've not seen any improvement in the skin yet but it does seem to have stopped them growing (they were getting to be like a runaway train before I started chemo). Onc is happy to keep going with it just now and says it's slow growing so shouldn't expect any dramatic shrinkage yet.

    Struggling a bit with the nausea/acid reflux, still trying to find the right drug for that one and sometimes a bit tired. Hands and feet just really starting to bother me a bit more, thought I was going to get off lightly but onc expects it to get worse as I go on.

     I was hoping to avoid the hair thinning as hadn't noticed anything obvious yet, although hard to tell when hair still so short from previous chemo, but you have me a bit worried about it now seamstress if it's going to be more gradual.

  • plumblossom
    plumblossom Member Posts: 22
    edited August 2012

    Thanks seamstress. I think Xeloda is no good for the liver in someway. I will discuss this with my doctor if I could reduce the dose. I haven't noticed any change of my hair.  For the mousedores, you may try watermelon or Manuka honey.

    LuvRVing, I am so glad for you. Hope the new drug works.

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited August 2012

    LuvRVing - glad to hear there another oral drug for you.  That's great!  I hope you have gret results.

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited August 2012

    Gail5 - I am taking Nexium for the reflux and have had good results.  I think this is my 5th week on it.  I think it's like a 6 - 8 week course, then you stop taking it.  I hope you find something that works for you. 

    I haven't had any hair thinning yet, and I don't think everyone gets it.  Maybe, we'll avoid that side effect.

    Glad to hear the Xeloda is working for you.  

  • seamstress
    seamstress Member Posts: 22
    edited August 2012

    Hello gail5...I had a terrible time with nausea and vomiting until I had a dose reduction because of bad hand/foot syndrome.  All the nausea meds made my vision blurry.

    I don't think my thin hair is noticable to other people.  When I gather it in the back like I'm trying to make a pony tail, it's as thin as a pencil.  But my hair is curly/wavy from original chemo in 2009 so it always looks fuller than it really is.

  • Swannay
    Swannay Member Posts: 50
    edited August 2012

    LuvRVing, hope the new drug works and you have great quality of life.

    I have noticed some hair thinning and bloating after 4 cycles. I get my first scan tues. since starting xeloda. I'm so nervous.



  • banjobanjo
    banjobanjo Member Posts: 187
    edited August 2012

    Good luck with the trial drug, Michelle - hope it is painless and effective (the two things we all want!)

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2012

    Hoping good things with the new med. sounds promising.

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