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All about Xeloda

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Comments

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Chickadee - I'm the opposite, can't get my nose to stop running sometimes.

    Chemo unit phoned and blood counts are Ok so good to go tomorrow. Expect I'll still have a ridiculous wait for the pharmacy to supply tablets but at least I don't have to repeat blood tests and wait an hour for the results.

  • gma12
    gma12 Member Posts: 3
    edited November 2012

    I am new to chat rooms.  I was just wondering if anyone has had mouth sore problems with xeloda.  I already have chemo induced neuropothy from my chemo treatments two years ago so I am not too worried about the effects of xeloda on my hands and feet becuase I may not even be able to tell the difference.  The idea of mouth sores scares me.  I am on 2 weeks on 1 week off and I just finished my first week.

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2012

    No mouth sores here. Hands and feet are more typical. Dry skin and cuticles.

  • gma12
    gma12 Member Posts: 3
    edited November 2012

    I am on 2500 mg a day. Reading some of the other posts that seems high. What is the average?

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Hi, gma12 -

    I don't know what average is, I've seen it all over the board, on these boards. My doc started me on 1000 mg. 2ce a day. I will finish my first cycle (2nd week) tomorrow. I see the onc again in 3 weeks, so not sure if he will adjust or leave it alone...

    LL

  • gma12
    gma12 Member Posts: 3
    edited November 2012

    I take 3 pills in the morning and 2 at night.  How do they know if these are helping? Sorry for the stupid questions but as I sai I am new at this.

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2012

    I started on 4000mg 14 days on and 7 off. We agreed after a couple cycles and the hand/foot syndrome problems to back off to 3000mg 7 days on 7 days off. I had some initial regression in the liver and my bone mets remain stable. I've been on this since April. So far so good.



    So your dosage is not high by any means. In terms of it working you won't know until you are scanned again, usually in 3 months.

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    Welcome GMA....

    I haven't had any experience with mouth sores....so far, nothing to complain about.  I am in my 3rd cycle...and I take 2000 x 2 a day.  My first scans since starting Xis the Monday after Thanksgiving...

    Hugs

    Robin

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Welcome gma12. I've been on 2000 twice a day since May and no mouth sores. My doc scans me every 3 months and so far each has shown regression. Next scans coming up mid December.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    I have not had any mouth sores either. My WBC didn't even dip! I've noticed the slightest, slightest bit of dryness of my hands as of yesterday - but I was also traveling in cold temperatures so that could completely be the reason for that.

    LL

  • TXGigi
    TXGigi Member Posts: 39
    edited November 2012

    I will be on Xeloda for 3 years come January.  So far no mouth sores.  My dentist almost fainted when he saw the inside of my mouth.  It is completely freckled.  Took me forever to convince him that it was a side effect since I got freckles all over from the Xeloda.

    I am on 2,000 mils per days, 7 on and 7 off.

    My eyes water a lot and in the morning I have a hard time opening them up.  I just have to lay there and relax myself and then they open.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    TXGigi - as someone who just started Xeloda, it's great to hear that you've been on it so long and never got the mouth sores! That's really encouraging. Also - I hadn't heard about the freckles before, so I'm glad to know that if they pop up, that's to be expected.



    I'm in TX also! ;-)



    Hugs -

    LL

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I have the freckles also. Never looked in my mouth but so far I have them on the palms of my hands and some on my face. One nice dark one right on the bridge of my nose, of course. :-P

  • LilSchatzie
    LilSchatzie Member Posts: 34
    edited November 2012

    I don't post much here, but wanted to add that I received good scan results. I have mets on my lungs, a met on the liver, and I can feel the cancer in my auxiliary lymph nodes. Well I still feel the cancer in my auxiliary lymph node, but doc said scans look good and I have considersable regression. So happy I don't have to change treatment for the holidays. Started Xeloda in early August 2000 mg 2x a day 7 days on, 7 days off. TM's dropped in Sept. in Oct. CEA dropped, but 15.3 went up 1 point. Hoping next week to have had the both drop some more.

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    Great news Lil....thanks for the encouragement!

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    gma12 - I've not had any problems with mouth ulcers and have completed 6 cycles since end of June. I do use a mouth wash after brushing teeth at night to be on the safe side. I use Dentyl but not sure if it's sold in the US. 2500mg per day doesn't seem too high. I've just had my dose reduced from 4000mg to 3600mg per day and I'm on the small side. They usually start with the max dose for your height and weight and reduce it if SEs are a problem. Not sure what kind of mets you have. As I have skin mets I can see if it's working and so far it has kept me stable and have a small improvement. I did have a CT scan at start of chemo for my baseline and one 6 weeks into Xeloda but they didn't show up any other mets, so onc doesn't order them routinely now.

    TXGigi - didn't know you could freckles in your mouth, but I have noticed some new ones on hands and face and skin is paler than normal too. Do you get eye drops?

    Lil - great news on your scans. Long may it continue to work for you.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Lil -

    That is such great news! Thanks also for posting about how your TM's dropped. That really is amazing that it works so fast. I had one freckle on my thumb from the chemo when I was first dx'd 12 years ago at Stage II. It disappeared for years - but just recently came back in the last year or so, completely out of the blue.



    LL

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Hi all -

    Does X give you chemo brain? It's been so much more gentle to me so far in terms of SE's (early, I know - I just completed cycle 1 last night), so I'm wondering if it's not as severe as other chemo's, or if it's about the same?



    When I had AC then Taxol 12 yrs. ago, my chemo brain was awful. I would liken it to when you drink too much, and cannot remember things the next day...I mean, I would have such holes in my memory. I worked the whole time, but it was very hard, and thank god I had a compassionate co-worker who would fill in previous conversations for me. So, I can't help but wonder what I'm in for with this.



    Thanks, Ladies -

    LL

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2012

    I think it does somewhat. My brain with holes is not as bad as it was on other treatments, but I still stall grasping for a simple word or name I should know but can't drag out of my foggy brain.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Chickadee - yup - I think that's starting with me. I noticed that searching for words thing. Not constant, but it's happened, and it's definitely not normal for me. And I've noticed that I'm forgetting some things I should definitely remember - BUT - I have been extremely distracted with this whole situation seeing as I've just been recently dx'd. I think my brain has definitely been on overdrive, so mundane things like, "Oh yeah, I have to call so and so back at work," may have been falling to the wayside. It could be the stress.



    I'm trying mightily to chill the heck out and find my new normal. I guess I'll see how the memory holds up as I go forward...

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Liz - I think Chickadee is right about the chemo brain, but not sure if it's being off work so long as well that's affecting me.

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I notice my se kick in on my second week then start to subside toward the end of my week off and I feel the best on my first week on. My hands and feet are really burning this round,the skin feels real thick on my hands and feet and I'm really tired. I've decided to cut my doses in half for the rest of this cycle. My onc mentioned that it could slow the healing from my bmx and i may need to come off. I want these drains out so rather than stop completely, I'm cutting back by half on this second week. Its the 2nd day and I already have my energy back. The x seemed to hit me hard this round. Could be because of surgery.

  • buburuzaa
    buburuzaa Member Posts: 17
    edited November 2012

    My  mom finished one cycle of Xeloda- 4000 mg every 3 weeks on, one week break and has just started her second cycle. She has been great, tired but much better than other chemo.....no mouth sores either...

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Frapp - hope you make a quick recovery. I think that's true that the chemo can slow the healing down so surprised you weren't taken off it for a bit. I also find SEs getting worse second week and takes most of the week off to feel better.

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I changed my mind and stopped it all together. I have my energy back, yea. May the healing begin.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Frapp -

    So happy to hear this. Hope this speeds your recovery.

    LL

  • TXGigi
    TXGigi Member Posts: 39
    edited November 2012

    Frapp,

    I also have a huge freckle on the bridge of my nose.  I bought that age spot remover cream but it did not help.  I cover it with concealer.  But heck, it really is the least of my problems.

    Gigi

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    Glad you see a difference Frapp!

    Hugs!

    Robin

  • Jac53
    Jac53 Member Posts: 58
    edited November 2012

    Progression-free on Xeloda!

    Multiple cartwheels, happy dance, off with the big girl pants (for a while at least) & a stupid smile stuck on my face since the onc told me this morning

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2012

    Fantastic news and something to be thankful for!

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