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All about Xeloda

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Comments

  • stagefree
    stagefree Member Posts: 360
    edited November 2013


    runny nose? Yep


    Dry eyes? Yep


    Lower abdominal pain ? Yep


    Weight gain ? Yep


    Fatigue & urge to sleep? YEP


    Hair dyed? Yep ( inoa with bleach) after a few months my hairdresser said my hair is back but weak so no more bleaching for God-knows how long.. So got the Mohawk to help the hair recover


    For me, the first week is the easiest, the week off is just pills, chemo still active full speed in the body. MO asks for bloodwork at the end of week off.


    Kebab, so happy for you! Now Xeloda keep working for our dear friend!!


    Ritalin? Nope, MO said Xeloda is too complicated a chemo she wouldn't risk any possible interaction so avoids most other drugs..


    At this stage & with the experience we need to focus on ourselves, rest, good nutrition, exercise and cherish time with loved ones. Work is crucial for money only, that's me of course. Lizlemon please don't push yourself too hard. I can't imagine still working fulltime with all of this going on..hope it gets easier for you somehow.


    Hugs all


    Ebru

  • lulubee
    lulubee Member Posts: 903
    edited November 2013


    Ebru (and anyone else!), have you discovered anything that helps with the abdominal pain? It's been bad enough this week to keep me from leaving the house for fear of doubling over in public!


    I read somewhere that anti-nausea meds might help, so I took Zofran a few times, and I think maybe it eased it off a bit for a while, but it comes back.

  • rockinlife
    rockinlife Member Posts: 14
    edited November 2013


    Just posting, that, at the end of cycle 3, slathering hands and feet with Burt's Bee's shea butter and Walgreens emu lotion, that seems to do the trick. Keeps the hands and feet from getting worse than just the feeling of sensitivity. I'm ready for my week off.


    I still maintain that the side effects are worth the tumor marker drop.


    Please, everyone, keep your spirits up! There are so many clinical trials and promising drugs in the pipeline.


    I think we're all going to be OK. Fight!!!!!!! And don't forget to enjoy life!

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2013


    Lulubee -


    A couple of cycles toward the beginning of when I started taking X, I would get pains in my abdomen like someone was pressing their fist into it, and just holding it there. Out of desperation, I tried gas x, and amazingly, it made a REAL difference. I would've never thought it was due to gas - it just wasn't that kind of pain. Might not hurt to give that a try? It only happened to me a couple of times, then never again. I think now my body has adjusted to X, mostly, except for the fatigue, which I really struggle with on a daily basis. On week/off week, doesn't matter. I think I wouldn't feel awake unless it was out of my system for several weeks.


    Ebru - thanks so much! I'm trying to get by with doing what absolutely has to be done at work, and pacing myself as much as I possibly can. It's a tough dance, though...


    LL

  • CalicoCat
    CalicoCat Member Posts: 299
    edited November 2013


    Got good news and bad news on Xeloda today and can't figure what to make of it. CA 27.29 dropped 90 points to 237 (yay!), but CEA went from 6.2 to 9.0 (yikes)! Any ideas, ladies?


    xoxoxox


    Calico

  • hansaim
    hansaim Member Posts: 68
    edited November 2013


    I am finishing my first cycle today. So far, fatigue is the major one. My bone pain and mobility (I have painful bone mets) seem to improve a bit, or maybe it's me hoping that X is doing the job. My hands and feet are fine. For those who suffer from HFS, when did it start? Looking forward to the week off.

  • CalicoCat
    CalicoCat Member Posts: 299
    edited November 2013


    My HFS started Round 2, Week 2 and got so bad, they stopped the drug for 2 weeks and switched me to a 7 on/7 off schedule. I'm doing fine on that.


    xoxox


    Calico

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited November 2013


    sherbab - I took Xeloda for a year on its own before the cancer spread further then was placed on Taxotere along with Xeloda. Xeloda is a piece of cake for me compared to Taxotere. I get the hand and foot syndrome on X, and Tax causes some issue with feet also, some fatigue but nothing compared to the combo and never lost my hair until I started the Tax. I am on the 7 days on and 7 off, 1500 in AM and 1500 PM and Taxotere every 3 weeks. I take Zofran the week on X and am not good about putting lotion on feet or taking care of them like I should, I keep telling myself I have to get better about it but when you put the lotion on or bag balm I need to put socks on so it does not get all over the floors, when I do that my feet get so hot and turn cherry red and burn so that is part of the reason I do not do it. I get along better if I can go barefoot. How long do you have to take the Tax? I started it September 4, 2012, did 6 treatments, had 3 months off, took it again for 6 treatments, got another 3 month break and started it again yesterday. My onco also give me a break off X at the same time. I will probably be on this regimen until it quits working then on to something else. There is a small percentage that are highly sensitive to Tax and I am one of them. I have to go for fluids a week after the treatment and get a Neulasta shot. There is a Taxotere thread on here, don't know if you have seen it or not, it has not been active and am not sure why, for a while it was very active. It is nice that you can continue to work while taking this regimen. I am laid up for about 13 of the 21 days and can not function, X alone never had that effect on me. I have not heard of anyone else that is taking this combo but I am sure they are out there, maybe I need to look for a thread on here of others taking this combo, it could answer some questions for me I am sure.


    For those asking about coloring hair while on X, I did it for a year when I was on it and it did not bother it at all and did not bother my scalp either so I had no problem. I know it says not to but I tried it and also saw that others had done it without any trouble so I just went for it.

  • sherbab
    sherbab Member Posts: 21
    edited November 2013


    Jeanie - I think I am going to be like you on the combo, on then off then back on until it quits working as well. I started one year after you did - I had my first Taxotere and Xeloda combo on 12/6/2013. I never had either alone. I will have my 5th of 6 estimated rounds (though they have said count on more) on December 2nd. I guess they are going to have to give me a break since I will actually have the tumor removed along with my lymph nodes. I will definitely look for the thread you referenced. Sorry to hear you are down and out for the first 13 days.


    I see you are in Blair, I am from Nebraska - while I have been in TX since 1990 my entire family is in NE and I go there frequently.

  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited November 2013


    Quit my job and worked like mad this week to get things off my shoulders. Lots of paperwork and now my HFS shows up just shredding my hands. What's so annoying is that, when working, I feel fine, but then I would hit a wall and just feel like I was struggling to free myself from quicksand. I have been crying a lot from the outpouring of incredibly kind emails I've received from people I've worked with and customers, too. Looking forward to being on the other side of this heart-rending transition.

  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited November 2013


    Are your feet burning? Mine were burning today and I tried something inspired by a Pinterest pin I had. I got out a jelly roll pan and soaked my feet in cold tap water with a good splash of amber Listerine. Don't use the blue unless you want blue feet! Felt soooo good and helped soften the calluses on my heels so I could use a callus grater to slough them off. My feet are happy now. I'm sure it helps with fungus if you have that, too.


    Try it! Sooo nice.....

  • Michelle21
    Michelle21 Member Posts: 3
    edited November 2013


    I am on 7/7 and today is day 4 of my off week. My feet have been on fire since yesterday. I thought about the cold water soak but I'm going to try it with the Listerine. My tummy is hurting so I took two Gas X. I'm hoping that works. Has anybody had a sore throat? Mine is burning and since I feel weak I don't know if it's the X or if I'm getting sick. I have the type of body that meds hit really hard. I ALWAYS get the worst SE's. Is there anyone out there like this?


    Feeling frustrated.

  • sherbab
    sherbab Member Posts: 21
    edited November 2013


    the feet soaking sounds great! Thank you for that info. I had a sore throat last Sunday that turned into a bit of a head cold during the week. Nothing major just an inconvenience.

  • M360
    M360 Member Posts: 164
    edited November 2013


    Ladies, I've been off Xeloda and was to start back up before getting a bone and tissue infection in my arm. I was told by my MO to soak my hands and feet twice a day in cold water and a metal pan will feel even better than cream. I tried Zofran and Compazine for a while, working with a symptoms management doctors he put me on Promethazine12.5mg for stomach and nausea but what is a plus it stops the runny nose, which is one of the things it's suppose to do. This has helped me a lot. I have PET scan and MRI's next week to see how things are going. My problem is that during all these years having cancer my tumor markers have never gone up. With mets in spine, lungs, ribs, hip and femur all growing my tumor markers are alway normal. I was told that I was one of those people who they can't see medical changes with tumor markers, only with PET scans. I start back up around Thanksgiving and hopefully I can still control all the SE's.


    I thank all you ladies for posting. I appreciate hearing what effects Xeloda is having for all of you and it helps me to realize that I'm not the only one with fatigue.


    Hope all of you have a wonderful Thanksgiving and one thing I'm thankful for is this site.

  • milehighgirl
    milehighgirl Member Posts: 397
    edited November 2013

    Thanks m360.  I hope you can sail through again with little SE's.  I'm one  of those who have very few and I'm on round 8 this week.

    I have the dreaded scans today to see where we're at.  Hoping my hip pain is healing pain and not progression so keeping my fingers crossed.  I too have had some fatigue but I'm relating it to the pain meds that put me out.  Doesn't get rid of the pain but sure does make me sleep!

    Sue

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited November 2013


    sherbab - I hope you found the other thread, I do not think anyone has posted for a long time. I just wonder how many of us are on this combo. What a small world, you being from Nebraska. What part is your family still in? I hope you are getting along with this combo, I will feel a little more human tomorrow, but it will be next Monday before I feel better, but that is OK. I have tried to lotion my feet this time, I am terrible about doing that, even when I just took X, I did not take the time but the two together has made it worse. I did have to have to have my big toenails removed in February and they are starting to grow back, just hope they do not have to come off again, I know Tax can cause you to lose your nails. I am going to try and be very faithful about putting lotion on so that my feet do not get so sore and crack like they have in the past.

  • Loveforlife
    Loveforlife Member Posts: 67
    edited November 2013

    Hi All,

    I'm on day 11 of round 2 (14/7). Hands and feet are doing fine (I like hot showers, but after taking one I rinse my feet and hands in very cold water, then moisturize with bag balm. Also using bag balm at night.) Not hungry at all - I think I've lost about 5 pounds this round so far. Been eating, just about half of what I normally eat though. Mostly I've had a lot of fatigue - I'm still working full time so that has something to do with it. I've also had a cough that started on day 2 and keeps getting worse. I'm interested to see if it stops when I have my 7 days off. It did last time, and my MO said "cough can't be from the Xeloda," I may hit him if it stops again on the off week and he says that again!!! Like I don't know my body and what meds do to it...He's usually pretty good, so I wonder if this was a miscommunication from the PA that I don't like very much. My shortness of breath is also increasing each day - the PA's response was "use your oxygen if you have to..." Hmmmm... how about considering lowering my dose or putting me on 7/7 and seeing how that works??

    I also have the runny nose and dry eyes... I guess I can deal with that. Just have to buy stock in Kleenex and artificial tears!

    Anyway, last tumor markers one was up and one was down, but that was only after round one. We'll see what happens next and when my next CT scan will be. On the positive side, I can still breathe much better than I could before I started X, and my pain level is down so I can manage it with Tylenol and Advil.

    Hope you're all doing well, or at least managing the SE's as best you can.

    Laura



  • Mompsych
    Mompsych Member Posts: 88
    edited November 2013


    hi M360


    You are right about tumor markers - they are reliable indicators for some but not others. Does you MO ever measure CTCs (circulating tumor cells)? Similarly,They may (or may not) be an indicator of progression of disease.


    Just sympathizing with all you ladies about the damn sx; crusty eyes, itchy red feet, and major FATIGUE. May we all hang in there despite the symptoms!

  • mutherflush
    mutherflush Member Posts: 85
    edited November 2013


    Hi. I have just started cycle 5 of X and Had bloods done yesterday(Monday) and the CA 15-3 show a slight rise (5points) but CEA has gone down. I had to take extra week off before last cycle and the dose was reduced. has anyone else had this happen and did markers go down on next test. Please someone say yes. My CT results should be back on Friday. Hoping that this shows improvement. TM's have always been a reliable indicators for me. I'm worried now that X may have stopped working.

  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited November 2013


    Is this weird? I never have these marker tests you all are talking about. I only get scans.

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


    dancingveggie- No it isn't weird. Markers are an inexact science. My oncologist follows them more out of curiosity than for actual diagnostic purposes. There are several things that can make markers go up that don't have to do with cancer like infection and inflammation. I do think markers are a way to watch for ovarian cancer but I could be wrong. My markers have never been that high or out of the normal range and I have metastatic disease. This is a long way of saying that tumor markers are one way of watching to see if the cancer is progressing. But like I said, it isn't a perfect science.


    Mutherflush- an increase of 5 is not a huge concern. There are many things that can cause this other than cancer. I will believe that your test results will come back great and that you have no reason to be worried. Best wishes.

  • Loveforlife
    Loveforlife Member Posts: 67
    edited November 2013

    Felt like I got hit by a bus this morning - major fatigue. Day 14 is here - Yay 7 days off. Had to drag myself to work - still tired, but managed to accomplish some things at work. This is only round 2 - does the fatigue get worse as you go on, or does it level off?

  • milehighgirl
    milehighgirl Member Posts: 397
    edited November 2013

    Loveforlife, I'm on round 8 of 7/7.  Didn't start getting the fatigue until about round 5 or 6.   This is also the first time I've had a nausea reaction.  Comes about the 8th hour of the 12.  Not sure what's causing it but it comes on fast.  Happened twice today :(.

    Other than this new thing, having a pretty good go of the stuff with few SE's.

    Sue


  • Loveforlife
    Loveforlife Member Posts: 67
    edited November 2013


    Thanks for the info. Sue. I'm going to talk to my doctor about switching to 7/7. I feel pretty good otherwise, definitely not the worst chemo there is! Hope your nausea gets under control!

  • milehighgirl
    milehighgirl Member Posts: 397
    edited November 2013

    Well ladies, the scan results finally came back.  I'm off the Xeloda and am I bummed!  It worked very well on the breast tumors.  Downside is I have some progression elsewhere in lymph nodes and new disease is in the abdominal area.  Thus, the doctor doesn't want to chance it spreading more while I think about what to do next.  I'm being put into a trial that I will start in late December.

    First several weeks are intensive so doc said if I can manage to get through those first couple of weeks, the schedule evens out and she believes I'm the perfect candidate for this new drug.  Downside is it's likely I'll lose my hair.   She said it's 50/50 if I lose it or keep it but won't know until I get there.  I have to be off the Xeloda for a month so that will give me time to research how to keep it, lol.

    It's been a great ride on this stuff.  I'm going to pray that all of you can keep on it and the SE's are minimal as they were for me.

    You're all doing so great.  Blessings.

    Sue

  • slowloris
    slowloris Member Posts: 85
    edited November 2013


    Sue, sorry about the progression. I felt X slowed down progression with me but still thought the tumors were ever so slowly getting bigger. I am 3 wks off X, 1 more wk to go before surgery again. then after surgery I think they will start a new Chemo, IV again,depending on the pathology report.


    What kind of trial are they thinking of using? are you triple neg?


    Prayers are with you, praying they get this under control again. Let us know how you make out.


    lori

  • CalicoCat
    CalicoCat Member Posts: 299
    edited November 2013


    Hi, Sue, and seeing you having great success on the new chemo!


    I am soooooo slow, dense, in denial, whatever. I hadn't considered the circumstance of having the BC regress in one spot, but progress in another, but why not? It's like a Transformer, always morphing.


    Hope you'll keep posting on this X thread.


    xoxoox


    Calico

  • mutherflush
    mutherflush Member Posts: 85
    edited November 2013


    Hi ladies. Hope you are enjoying your weekend. Went to see onc yesterday for scan results. Guess what after only 4 cycles of X there are no visible signs of cancer in my liver and bone and lung mets not showing any new signs of activity so they are considered stable. I am carrying on with X at the lower dose for at least another 4 cycles and then I will be reviewed again. The lower dose has really improved HFS. I'm hoping to get back to driving next week now that I can grip the wheel and feel the pedals.


    Wishing you all success. Loads of hugs


    Helen N

  • CalicoCat
    CalicoCat Member Posts: 299
    edited November 2013


    Fabulous news, Helen!!! What dosage are you on and do you do a 14/7 or 7/7 cycle?


    Congratulations!


    xoxox


    Calico

  • mutherflush
    mutherflush Member Posts: 85
    edited November 2013


    Hi calicocat. I am on 1950 x twice daily (total 3900) 14/7. Onc sys she is reluctant to put me on 7/7 because trials are not conclusive on long term efficiency. I also take Ibondronic acid {Teflon coating for bones}.

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