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All about Xeloda

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Comments

  • braids3
    braids3 Member Posts: 131
    edited June 2012

    wow i didn't know either i take it for the nuropathy when its bad and it helps thanks for the tip.my problem is i take so much that now i seem to forget the few supplements i do hopefully i'll be off the antibotics soon july will be 6 months i'm ready

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited June 2012

    sueper13 - thanks for the reminder...I will try that. 

    Chickadee - I'll be interested to know what your onc says, too.  I haven't read anything about B6 being a problem, just folic acid and multiple vitamins. 

    I've been trying to find out what the deal is with antacids, but there doesn't seem to be any concrete research except with Maalox and the findings say it's not an issue.  I've been taking Zantac at night because reflux is an issue and don't plan to stop.  Tonight is my last "on" dose.  Looking forward to my week off and hoping my feet/hands improve quickly.

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

    Cynthia - I asked my onc about antacids and she told me I could take Prilosec or Pepcid but to avoid Tums (I'm assuming Maalox would fall in the "avoid" category).  So far I haven't needed anything, but I'm in my first cycle.  And she confirmed no folic acid, so I couldn't take the pre-natal vitamins that got me through chemo last summer.  I would think Zantac would be fine...reflux is just nasty.

    I took B6 last summer when I was on Taxol, along with Acetyl L-Carnitine and L Glutamine.  I didn't get any neuropathy so it either worked or I wasn't going to get it anyways.  I will take that combo again if I show any signs of HFS or neuropathy.

  • dormouse72
    dormouse72 Member Posts: 21
    edited June 2012

    My boyfriend said something that was really funny.  He asked when I'm going back to the doctor and I said next week.  He said "Tell the doctor I heartily approve of this medicine.  I feel a lot of changes and I'm feeling you up a lot more!". Considering he was the one who felt my original tumor first, I think that's a pretty ringing endorsement (even though it probably won't be included on any of Xeloda promotional material any time soon).

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

    LOL, Dormouse!!!

  • Lynn1
    Lynn1 Member Posts: 209
    edited June 2012

    Dormouse:  LOL!  :))

    I think the B6 does help, but PLEASE check with your onc FIRST!  The amount to take may vary by person.   The amount I'm on is LOTS more than the bottle recommends.  So just make sure they know you are taking it and get their recommendation on how much.  But, I do recommend it also - it does seem to help.  

  • alesta29
    alesta29 Member Posts: 240
    edited June 2012

    So now have two blisters - 1 on each foot and 6 more doses until the week off, so trying to keep my feet up but keep seeing ironing, hoovering, stuff to be put away etc - this is hell for a tidy freak like me!

    Bought myself some nice soft slippers the other day and when I need to go outside, have worked out that both my husband and son's Crocs fit over the slippers. Sometimes it's nice when things work out! 

  • Lynn1
    Lynn1 Member Posts: 209
    edited June 2012

    Well ladies, I'm afraid I have to bid you Diva's good-bye.  Scans this week show progression of both size and number.  Still contained to bone only, but definite progression.  Dang it!!  I so loved my X!! 

    Wishing you all the very best, and that your se's will be minimal.  Thanks so much for all these months of support and camaraderie.  I appreciate it so much.  xoxo

  • alesta29
    alesta29 Member Posts: 240
    edited June 2012

    Aw crap Lynn , sorry to hear. What's next? Good that it's decided not to roam outside your bones though.



    See you around and hope the next one is more successful lx

  • Lynn1
    Lynn1 Member Posts: 209
    edited June 2012

    Thanks, Alesta!  IDK what is next!  He is sorta leaving it up to me to decide which one I want to try next.  I have NO idea what to do.  I did start a new thread on this, so if anyone has any input, I would sure love to hear it.

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2012

    Well that just sucks lemons. Once something starts workIng we believe it will last and last. I hope the next one is as good for you.

  • Frapp
    Frapp Member Posts: 343
    edited June 2012

    Oh Lynn I read your post and got goosebumps. I'm so sorry to see you go. I was so hoping it would continue for you. Thankfully it's still in bones. I will be watching for your next treatment and praying that it works as long or longer than X. (((hugs)))

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

    So sorry you have to leave us, Lynn. Have you done hormonals yet?

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited June 2012

    Thanks LuvRVing for the antacid info.  I really do need to continue to take something for the reflux at night so I'm glad I have options.  I also took l-glutamine when I had Taxotere and no neuropathy, but who knows if that's why.  I'm going to try the B-6 for my next "on" cycle.  My feet are very red today, but they hurt about the same and my hands haven't gotten worse.  I hope my feet begin to improve soon.

    Alesta29 - that sucks about the blisters.  I have a hard time not doing stuff that needs doing also.  

    dormouse - too funny!  

    Lynn - Hugs

  • alesta29
    alesta29 Member Posts: 240
    edited June 2012

    Another symptom I googled last night because I'm not sure if it's real or imagined.



    I recently had a routine eye test and my vision had deteriorated a tad like it does when you're 50 and only remember to get checked out every 3 years! The guy said my prescription had changed only slightly and unless I really wanted new glasses I should stick with my old ones.



    Sometimes I think my vision is blurred and I have to rub my eyes to adjust. Haven't noticed that they are overly dry or runny just blurry.



    Anybody else get this?



    Laurie

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited June 2012

    Yes, Laurie, I've experienced the eye problem, too.  I have another post on here about it, I think.  It's not bothering me now, come to think of it, so it's not a constant.  Weird.  It was mostly in one eye, but both seemed not to see as clearly.  I think my vision has decreased a tad since the Xeloda, too.  Not a lot, just slightly noticeably.

    Cynthia

  • Frapp
    Frapp Member Posts: 343
    edited June 2012

    Me to. I have glasses that I use for driving and have been using them much more often to just walk around. It seems to come and go.

  • bhd1
    bhd1 Member Posts: 173
    edited June 2012

    alesta that is brilliant  putting husbands crocs over your sliippers.  i am gonna do that.

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2012

    Initially I was bothered by intermittent blurring. I was ready to go for new glasses as well. It has faded though. I'm due for a yearly checkup on my eyes just have to make the appt.



    Day one of ON week. Let's see if the HFS ramps back up quickly. My fingernails are splitting on the sides. Clipped them all short. Fingertips a bit numb and opening a water bottle is really a pain.

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2012

    Grrrrr only a couple hours back on and my left foot is fat and swollen. Felt good to soak but the swelling is a pain. Only shoes that fit are sneakers with laces real loose.

  • sueper13
    sueper13 Member Posts: 360
    edited June 2012

    Chickadee, just checking on that swelling...did it go away?  It caught my eye because you had swelling on ONLY ONE SIDE--be sure to get that checked if it continues....Lynn1, sorry to read your news but glad it is still in bones only...

    I am taking a 1,200 mile road trip just me and my DOGS, starting tomorrow.  I will spend 2 nights on the road.  I am sitting here printing out directions for each day to the hotel, and then to a local dog park.  That makes it so much easier travelling with the dogs.  We drive all day, then go to the dog park, then the hotel....then the next day we start out at the dog park, drive all day, and do it again.  It works!

    Hope all have a good day and NO bad side effects or bad news...

    Sue

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2012

    Sueper, the swelling is a bit less. I swelled the first weekend on X and the onc had me ultrasounds for DVT. Negative. It's fluid retention. I've had swelling of the ankles in the summer all my adult life unfortunately and X seems to exacerbate it. Compression socks aren't real cute with shorts, now are they.



    Yesterday I had my all day sleepiness. Since it was sunday that's all I did.



    Have Great fun on your road trip. We hope to head west on I10 this fall for a road trip. Hoping to get 2-3 weeks of traveling. Its been a long time since the RV has hit the road.

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

    Anyone else getting regular calls from the Xeloda support center?  I guess my oncology office gave them my info and they are going to make calls on a regular basis.  I didnt learn anything new but they are going to send me the welcome kit with some cream, a pillbox, and whatever else.  I will finish my first two weeks of meds tomorrow morning and so far, so good.  I'm almost afraid to say it, but no SEs at all...yet.

    Chickadee - glad you're going to get out in that RV!  I need to start hunting down a reasonably priced used one for us.

    Sue - that sounds like quite a roadtrip!  Be safe and have fun!

  • Frapp
    Frapp Member Posts: 343
    edited June 2012

    I got that kit from my onc when she prescribed it. I'm on day 11 of second round and so far this is the best I've felt since being diagnosed 2.5 yrs ago. I have little things here and ther but nothing I can't ignore. I did a lot of walking the past several days on our trip to Albuquerque and my feet actually feel better. Not sure if it was the exercise or the lack of humidity that did it. Now that I'm back in the humidity of the NE well see if it keeps up.

  • Ljcan
    Ljcan Member Posts: 3
    edited June 2012

    I just started today on a 7 on 7 off scedual. Do you know what dose was used? My onc said I would most likely have no side effects but I have felt a little off all day and had a weird sensation in my throat. Maybe it's the idea that I'm taking it and I never heard about gloves

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2012

    My 7/7 dose is four 500mg tabs in the morning with food and the same 12 hours later.



    Your onc is off his rocker if he thinks you won't have side effects. I will say that they are very manageable on the 7/7. However, they'll still be something for you to manage.



    We've all had varying differences in our SEs and you will too. I hope yours will be gentle. Make sure you eat at least a snack with the night dose. I found the stomach issues tend to show up towards the end of the week. On your off week you may also experience SEs. Possibly diarrhea, fatigue, etc. hand and Foot syndrome didn't show up for me until 2 months in.

  • Ljcan
    Ljcan Member Posts: 3
    edited June 2012

    Thanks I'll make sure I eat with it. Sometimes I think that the onc thinks if a symptom is considered mild then it's not a symptom.

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

    I did learn one thing today from the RN that called me from Genentech...why you eat first.  She said that eating then taking the pills within 30 minutes was important as the food slows down the absorption of the drug...otherwise it gets into your system too quickly.  If you're not following these guidelines and having significant side effects, this could explain...  I'm finding it a pain to remember to take the meds with me when we go out to eat, but so far I've managed to throw them in a baggie in my purse. 

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited June 2012

    luvRVing - that's good to know about why we need to eat first.  It helps me follow the rules if I know why I'm doing it. 

    I finished my 2nd week on and am on my 4th day off (7/7) and I'm still having side effects.  I do feel much better today than I did the last 4 days.  I'm a bit worried that I'm having so many side effects on the 7/7 schedule, but I hope that maybe they will improve as time goes by.  My feet and hands are still a bit sore, but I'm ignoring it.  lol  I did have one side effect, though, that has me worried.  During the last couple of days of my "on" week and the first 2 of my "off" week, I was mentally/emotionally in a very "dark" place.  I've never experienced anything like it before.  I felt defeated and hopeless and powerless and not just about my situation, but about life in general.  That's just not me.  I may not be the most optimistic person, but I can always find something positive to focus on that will lift my mood, at least eventually, but nothing worked this time.  Then, I woke up today, and the darkness was gone.  

    Has anyone else experienced this on Xeloda?  I am not on any antidepressants and I would like to not have to take anything especially for something that just lasts a few days.  But, it was pretty awful and I'd like to not go there again.  

    Cynthia

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

    Cynthia - depression and mood altering happens in 5% of patients on Xeloda.  But I can also see how our Stage IV diagnosis could bring you to the dark place very easily!  Perhaps you should discuss this with your doctor...might be time for Ativan or another anti-depressant.

    By the way, here's a link to the prescribing information for anyone who hasn't read the Xeloda information in detail:

    http://www.gene.com/gene/products/information/xeloda/pdf/pi.pdf

    I hope everyone is having a great day with minimal side effects.

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