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All about Xeloda

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Comments

  • LilSchatzie
    LilSchatzie Member Posts: 34
    edited January 2013

    Hi Ladies,

    I don't post much on this thread, but I always read it and think about you all. I've been on Xeloda since August and I'm happy to report that last weeks scans show I'm

    Stable and TM's are continuing to drop. I'm on 4500 mg, 7 days on and 7 days off. I barely have any side effects. Xeloda is being good to me and I'm so happy. I know next month things can change...but I'll worry about that when I need to!

  • RobinNY
    RobinNY Member Posts: 136
    edited January 2013

    Gail...good luck on Friday!

    Robin

  • saskie
    saskie Member Posts: 71
    edited January 2013

    Mandymoo - I have been on Xeloda since July and my eyes tend to be the opposite with being dry, red and scratchy all the time - I use visine to help.

  • LizLemon
    LizLemon Member Posts: 191
    edited January 2013

    Hi all! Saw the onc today. I got really sick with some sort of virus and sinus infection last week. It was my off week, but I felt like a truck hit me, and my right lung where my largest tumor is actually HURT in the tumor spot when I breathed in. It scared the hell out of me. Anyway, I got an antibiotic last week, then had to travel for 3 days for work beginning Monday. I basically spent all weekend napping trying to get better and conserve energy. 

    So anyway, I AM better this week, the lung has stopped hurting, thank god, because it was really freaking me out. Was supposed to start the X again Monday, but I chickened out. I wanted to feel 100% before swallowing those pills. Saw the onc today, and he told me that he agreed with me waiting (whew!) and that my TM's are going DOWN. They've gone down each visit. They started out at almost 38 pre-chemo, and are down to 31 now. I know 38 isn't a big deal, generally, but it was for me, as my highest ever before was 16 when I had Stage 2A. So hearing 38 about made me fall off my chair when I got the Stage IV dx.

    Onc said the TMs moving down are a positive sign. He wants another round of X before we scan again. So I'll have a scan in 4 weeks right before I see him again. I guess my point in all this, is last week, I was in a VERY dark place, and so, so frightened of the physical symptoms I was having, especially the pain in the lung. Like waking up in the middle of the night crying from the fear. This week, over the crud, and getting this TM news, gives me hope that maybe the X really is working for me, and that maybe I'll be able to stay on it if the scan turns out ok. Of course, the scan will tell the story, but I have to believe that the TM's going down are a good sign. I just want a good QOL (don't we all...).

    Also got my Xgeva shot today. Easy peasy on that. I just want to sleep ALL the time, generally speaking.

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2013

    Saskie, thank you for your reply. I will go to the chemist and get some today. Fed up with tears streaming down my face. Oh well that is better than Hand/Foot syndrome which I had last round...

    Cheers

    mandy xxSmile

  • gail5
    gail5 Member Posts: 125
    edited January 2013

    Mandy - good news on the TMs. Hope that's a good sign and eyedrops help.

    LilSchatzie - stable is great news and it's good you tolerate it so well as sounds like you're on a high dose.

    Liz - that infection sounds really scary. That must have been some effort going to work with all that going on. Glad you're on the mend now and TMs are down. Good luck with the next scan.

    Saw onc today and she also reckons there is a slight increase in skin mets. As I've had a reduction in dose of X due to low blood counts, we agreed increasing the dose again would probably be counter-productive as I'd just end up with another chemo break to bring them back up. I'm now moving on to Vinorelbine (Navelbine). My unit normally gives it by IV but she thought it would be worth trying the tablets instead for my crap veins. Only problem she said was it was harder to get the dose right with tablets as people absorb it at different levels and it's also hard on those WBCs, but she's starting me off on a low dose and will build it up. I also suspect they prefer IV version as it's cheaper. Hoping to move house this year, so she will try to get me Monday/Tuesday appt dates so I feel up to house hunting at the weekends. 

    Good luck to everyone still on Xeloda and hope it continues to work for you for a long time.

  • chele
    chele Member Posts: 132
    edited January 2013

    I can't remember if it's been mentioned or not, but I am having good luck with using Corona on my fingertips with cotten gloves.  It's really thick and sticky so you need the gloves, but my fingertips softened from hard wrinkled prunes.

    I'm halfway through my second round (2 weeks on, 1 week off) of 3600mg per day.  Not sure I like it, struggling with nausea - bleh.  I'm taking Compazine for it, but it's not helping much.  TM jumped up another hundred points, but I'd only had one round of Xeloda so I'm not panicking yet.

  • Frapp
    Frapp Member Posts: 343
    edited January 2013

    Chele, try eatin a cracker or one thing hen you feel nauseous. I found that a little food took it away if caught at the start. Kind of like morning sickness

  • chele
    chele Member Posts: 132
    edited January 2013

    Thanks Frapp!  That's what I've been doing, which means I've been eating ALL DAY LOL!  But it's not really helping.  Just a constant queasy feeling.  ugh.  Nothing I can't handle - I'm a tough ol broad, but bleh, like I need another reason to be cranky Cool

  • Frapp
    Frapp Member Posts: 343
    edited January 2013

    Not to fear. Your body will get use to it and it will go away. I hope you have a good long run on it

  • chele
    chele Member Posts: 132
    edited January 2013

    Thanks Frapp!

  • LizLemon
    LizLemon Member Posts: 191
    edited January 2013

    Oh, Gail - so sorry you have to switch to another drug. I hope that the Navelbine works well for you, and for a long time. Thank you for all of your insightful and caring posts on this thread. The compassion you have shown has meant so much to me. I will be looking for you on your new thread, and hoping for great results for you! Take good, good care.

    Love,

    LL

  • LilSchatzie
    LilSchatzie Member Posts: 34
    edited January 2013

    Gail, good luck on Navelbean. I hope it kicks all the cancer to the curb.



    Chele, I hope the Nausea goes away. My TM sort of had mixed results after the first cycle. My 27.29 went up that first cycle, but started to drop between the 2nd and 3rd Cycle.



    I hope all are doing well.

  • Europa
    Europa Member Posts: 39
    edited January 2013

    Hello, just checking in.  I had been put on Xeloda in November.  I did one cycle and my doc ordered an OOph.  I had the surgery the day after Thanksgiving.  He then decided to stop the Xeloda and try the AI, Arimidex(generic).  I still read hear to find out how everyone is doing although I havent posted since I was recouping.  Good luck to you all and Happy New Year!

  • chele
    chele Member Posts: 132
    edited January 2013

    Gail, I had an easy year with no side effects on Navelbine!  I hope it works as well and for much longer for you!

    Thanks lilschatzie!  SE's much better today.  Now I feel stupid for whining.  Still queasy, but what the hey, at least I'm losing a bit of weight, don't mind that at all!  I'm hoping the jump up is temporary.  TM's have been reliable for me so far.

  • saskie
    saskie Member Posts: 71
    edited January 2013

    Good luck Gail on the Navelbine.   Chele hang in there girl, hope the queasy goes away.  I am on Raberprazole to keep the stomach and gas settled.  Hands, feet and tongue are my  se - burning - took a two week break and will see how the se's are.  May have to lower dosage again.

    I am so happy to have all you gals to chat with.  Friends and family really don't understand what we are going through.

  • chele
    chele Member Posts: 132
    edited January 2013

    Thanks saskie!  I agree that friends and family have no idea.  I have a good male friend, he is a volunteer fireman also and we were EMT's together too, and he has been a very big supporter of mine.  A month ago he was diagnosed with prostate cancer.  After having his biopsy he allowed he'd not prayed for me enough!  He had no idea about cancer really, until he got it himself.  He's going through all the test and wait frustrations we've all been through.  It's a real eye opener for people. 

  • gail5
    gail5 Member Posts: 125
    edited January 2013

    chele - No one can really get it until you're there yourself. Is Navelbine like Xeloda that you can stay on it a long time then?

    Thanks for all the good wishes from everyone and I'll continue to keep an eye on your progress here.

  • liv-
    liv- Member Posts: 272
    edited January 2013

    hi all

    im on a lower dose by the sounds of things from here and thats probably why i havent had hardly any side effects.

    at the beginning a bit of foot syndrome but now thats gone.

    just hope it does what its supposed to do.

    on 3000 mg daily  xeloda for 3 weeks, (4th month) one week off and 100 mg navalbine (2nd month) once a week x 2 weeks., then repeat the next month.

    xx

  • LizLemon
    LizLemon Member Posts: 191
    edited January 2013

    I'm just finishing the 1st week of my 4th X cycle. 1000 mg 2ce a day, 14 days on, and 1 week off. So far, this particular cycle, I've had none of the terrible gas/bloating and constipation I usually have. It's been kind of odd. I think the fatigue might be a touch better generally.



    I still (thank God) have no issues with hands or feet. Hands a bit more dry than usual, but that's it. I've taken to wearing gloves to wash the dishes so as not to dry my hands out further.



    It seems like I'm mentally getting used to taking it now - like they were any other pills, vs. omg this is chemo this is chemo this is chemo.



    Scheduling 1st CT since dx in late Oct in the next few weeks.



    Chele - I agree that no one can truly understand what this experience is until it happens to them. I've also found that people act the same way with much lesser challenges. Things can be all fine and dandy and "keep your chin up" about whatever the issue may be, until it happens to that person. Then they're all like, "OMG!" I'm not saying it's their fault, or anything - it just is.

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2013

    Hi all, I am on 2000mg twice a day. I have problems with bloating, nausea, occasional diarrhoea, foot blisters (and I have just been diagnosed with DVT so I have to give myself 2 clexane injections in the tummy), but I will stay on this dose till my tumour markers have gone down a bit more. I think that it is a good trade off. 

     I believe the power of the mind plays a big part in our wellbeing and overall health. 

    Cheers

    Mandy

  • KeepingFaith69
    KeepingFaith69 Member Posts: 52
    edited January 2013

    Hi



    I am on my 1st rest week of my 1st cycle.



    I feel and cringe at every 'niggle' in my body. I am terrified that it's not ' working' during the 7 days off.



    Looking forward to my next lot (in 3 days).

  • Chickadee
    Chickadee Member Posts: 469
    edited January 2013

    It's hard not to wonder If this stuff works or not. I had good results for my first 3 months and have been stable all through the summer up to now. So hang in there and I'm wishing great results for your first scans on Madame X.

  • braids3
    braids3 Member Posts: 131
    edited January 2013

    yes i hope it continues to work. saw onc,rad onc and neuro today i'm dancing with stable boy and mri results showed shrinking in brain mets yahoo! i really like this one!

    love and blessings to all

    chris

  • liv-
    liv- Member Posts: 272
    edited January 2013

    chickadee - the million dollar question. 'wonder if this stuff works'

    hope so.

    xx

  • LizLemon
    LizLemon Member Posts: 191
    edited January 2013

    Hi, KeepingFaith! Glad to see you here on the X board!

    Braids - that's so wonderful that you're stable! And that the brain mets are shrinking! Such good and inspiring news! 

    I've seen many positive stories on this board  - going through older posts, where if X works, it can really WORK, and fast. Here's hoping that we all have that experience with it. I'm really focused on not losing my hair and having to deal with that too. I know it seems stupid in the grand scheme of things, but I really, REALLY hated being without it the first time I had cancer. I'm no beauty - and I need my hair to frame my face. I looked more like Dr. Evil without hair than say, a young Sinead O'Connor (perfectly shaped head and beautiful features). I know - vain, shallow, etc. Guilty...

  • liv-
    liv- Member Posts: 272
    edited January 2013

    oh liz dr evil - lol - what about wigs, ive got 12 now.

    im all that too vain, shallow & guilty!

    hey sister - doing it our way!

    xx

  • KeepingFaith69
    KeepingFaith69 Member Posts: 52
    edited January 2013

    Thanks team : )



    I'm holding on to "it's working", yay!

  • Chickadee
    Chickadee Member Posts: 469
    edited January 2013

    Now might be a good time for a reprise of my first dose of X and the message I wished to send directly to those nasty little cancer cells.  Just for a bit of macabre levity.  So far the threat has kept working!  Take that cancer!!!!

  • liv-
    liv- Member Posts: 272
    edited January 2013

    love it chickadee

    CANCER

    CANCER

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