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All about Xeloda

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Comments

  • dinamarca
    dinamarca Member Posts: 17
    edited October 2013


    Thank you ladies. Sounds like side effects are different for everyone! I'm going to ask my onc about the 7/7 cycle or changing the dosage if se get worse.


    Linda, good luck with your tests next week.....


    Have a wonderful weekend :)


    Dina

  • mandymoo
    mandymoo Member Posts: 632
    edited October 2013


    My side effects were worse during the first 3 cycles and then I had to get the dose reduced. My side effects are tolerable, the worst one being my sore feet. Nausea, D, are minimal and I sleep like a log. I have been on X almost a year and I think it is fantastic as I have been stable since January this year. X took a couple of cycles to start taking effect so give it a little time.


    Cheers


    Mandy :)

  • Mompsych
    Mompsych Member Posts: 88
    edited October 2013


    thanks for all your input you terrific women!


    Linda,I am rooting for you. May your scans be clear and your innards free of nasty stuff...

  • saskie
    saskie Member Posts: 71
    edited October 2013


    Hi girls, my tumor markers were through the roof 17 months ago when I had to have emergency surgery to vertebrae because they were being eaten by the cancer and were pushing on my spinal cord. Surgery, radiation and 20 sessions of Xeloda and my tumor markers are now down within normal range. I too am hoping that the Xeloda will continue working for many years to come. The onc has reduced my dosage a few times because of the HFS. But soaking in really cold tap water seems to ease the effects. Freeze a freezer bag flat with ice in it and sometimes put under my feet at night if they get too irritated. Wishing each and everyone of you still on the Xeloda the best results possible.

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013
    Mompsych, I do keep my doses 12 hours apart. I'm up at the crack of dawn for work so it seems to work for me. I'm also on the Zofran and I've had intermitent constipation. I found that yogurt and/or taking a probiotic pill knocks it right out.

    Dina, you might ask your doctor about going to 7/7. I did right from the start. I'm 1500 2xs/day but found that I've had very few SE's. Research says that the effectiveness is exactly the same but the SE's are reduced. I think if I'd done the 14/7, I wouldn't have been so lucky. I'm just starting 5th round today and can't point to any real SE's.

    Ranger mom, I'm going to pray that you get better results than you might expect. You too Braids. What a great run! I hope I have the same success.

    I had my onc. appointment yesterday. I was sure she was going to take me off the Xeloda as I've had changes in both breasts and new skin lesions. She seemed to think just the opposite (why do we always think the worse? ha ha). Said that these changes can be weird at times in the early going. Also said my plural effusion was drying up in both lungs. Didn't think I'd need scans for 4-6 months out if that (my last ones were in early June). I'm so glad I get to stay on this stuff. No ideas about the hip pain but I refuse to do radiation. Like fighting fire with fire.

    I send blessings to all on a good week! Sue
  • dinamarca
    dinamarca Member Posts: 17
    edited October 2013


    Sue - thanks, I will ask about going to 7/7. I really want to minimize the se's!!! Actually avoiding them altogether would be nice.....especially HFS.


    That being said, I am on the 7 day break from xeloda (just completed 1 full 14 day cycle) and I'm still experiencing blisters on my bottom lip. The onc suggested abreva as the 'sores' are probably viral due to a lowered immune system. The abreva has not had any effect.......I'm not surprised as they are not sores they are definitely blisters! Anyone experiencing blisters on their lips?

  • saskie
    saskie Member Posts: 71
    edited October 2013


    Dinamarca - not blisters but I have cracked lips all the time now. I can't use chap stick anymore because I had an allergic reaction to Icy hot and it has the same ingredients and after applying chapstick three times and having my lips and face swell realized that chap stick had some of the same ingredients. All I can suggest is to try to keep them moistened whether with lotion or chapstick.

  • Kessala
    Kessala Member Posts: 91
    edited October 2013
    Hi Everybody!

    I started taking Xeloda in August. Onc started me on 4,000 mg per day with a 14/7 schedule. By day 10 I was suffering with hand/foot syndrome. I stopped the Xeloda until I had my next appt. with Onc.

    Onc reduced my Xeloda to 3,000 mg per day still with the 14/7 schedule. By day 11 the hand/foot pain started again and I stopped taking Xeloda untl my next appt. with Onc.

    Onc reduced my Xeloda to 2,000 mg per day still with the 14/7 schedule. I'm just beginning this cycle and hoping I can continue taking it for 14 days. I haven't been able to take Xeloda for 14 days yet!

    I've asked Onc repeatedly about taking Xeloda on a 7/7 schedule and she continually tells me the manufacturer only recommends taking it on a 14/7 dose schedule. Onc will not even consider having me go on a 7/7 schedule.

    This is not the first occasion where Onc refuses to think outside the box. It's all "the manufacturer says..." with her.

    Does anyone have a link to actual research that proves the 7/7 schedule works as well as the 14/7 schedule with fewer side effects? I'd love to be able to print articles to take to my next appt. with Onc.

    Thanks for any help!

    Kessala
  • stagefree
    stagefree Member Posts: 360
    edited October 2013


    dinamarca, just had the huge blisters on my upper lip this week.. my DS didn't let me kiss him. I looked horrible. Today it fell off finally...I use prescribed Bepanthol regularly on my face & lips as well as hands.. no more cracks that I used to have on the first cycles.


    Kessela hi, strongly suggest you take your time & read past this thread, you'll find answers to most if not all your questions. Welcome abroad..


    hugs


    Ebru

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited October 2013


    Mandy.....X took a couple of months to work for me also. I didn't get good results until my second round of scans which was 12 weeks after I started. I too hope to be able to stay on it for a long time....:)


    Good luck lovely ladies.


    (((Hugs)))


    Karen xxx

  • saskie
    saskie Member Posts: 71
    edited October 2013


    I like Kazzie would love to get any information showing the 7\7 cycle works as well as the 14/7. My oncologist also says she has only heard of the 14/7 being effective. That week off during the 14/7 seems to be my worst for side effects. Told that the drug builds up each day and that is why the side effects seem worse during that week off. Just when it starts to get better then you are back into taking the pills again.

  • eshinall
    eshinall Member Posts: 41
    edited October 2013


    Hi Everyone,


    I am currently on Aromasin + Afinitor and am probably going to be switching to Xeloda soon because the A/A has given me some nasty S/E. It seems that most people have hand and foot issues or skin issues. Is there anyone out there that has NOT had that Hand/Foot syndrome or skin problems? I walk alot for work and that scares me. Also what other S/E have you had? I am trying to educate myself on what to expect.


    Thank you so much,


    Liz

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited October 2013


    Hi Liz......I'm one of the lucky ones, no hand/foot syndrome! Slight welling in my fingers & pins & needles at night but nothing at all on my feet!! I've been on it for 8 months now......


    So you never know......I hope you too manage to avoid this also.


    Good luck.


    (((Hugs)))


    Karen xxxx

  • braids3
    braids3 Member Posts: 131
    edited October 2013


    hi Liz i was on x for 18 months i had very little h&f mostly in the summertime i used blu goo from walmart or henna. that was the only side effect i had good luck wit it

  • Europa
    Europa Member Posts: 39
    edited October 2013


    Hello, I am on day 2 of taking my first cycle of Xeloda. I have begun to read from page one on this thread, there is so much good information on here. I just got back from the store where I picked up everything that I think I will need except for the gloves. I cannot seem to find them. I guess I may have to buy them online? I do have one pair that came in a Burts Bees pack though. They have cute little bees on them. I hope to be able to find others. Does anyone know if you can get them local? I am looking forward to reading and catching up and talking to others that are walking the same road. Here's to X!!!

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited October 2013


    Europa.....good luck with your X....hoping for good results for you xx


    I've had a pretty stressy week & have forgotten to take my morning pils once & my evening pills twice!! Hopefully this won't have an effect......I have my next scans Monday week so fingers crossed,


    Hope everyone has a lovely weekend.


    (((Hugs)))


    Karen xxx

  • mandymoo
    mandymoo Member Posts: 632
    edited October 2013


    Hi Kazzie, It should be OK if you forget to take your tablets now and again. I have to have a 2 week break sometimes and I still am doing well. I only took my tablets for one week this last time and am taking a 10 day break. The SE's are the reason that I need to have a break now and again. My feet give me grief!!! Oh, and I also sometimes miss taking my tablets as well. LOL Good luck with your scans, xxx


    Cheers


    Mandy

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013
    Good morning everyone. I hope everyone has had a good week. I have caught up on all the posts and it looks like a welcome is in order for our new friends on the thread.
    Kazzie, I agree that to miss here and there shouldn't be an issue. We have so much of this stuff in our system that to miss a dose likely won't matter. I have company coming next week when I start my next round. I'm seriously considering going a second week off - we'll see.

    Here's a few sites that talk about the 7/7 schedule. The last one I cut and pasted a paragraph that you may want to show your onc if they're hesitant to go to the 7/7. Mine didn't flinch when I asked about it and I was put on the schedule from the beginning. With the exception of a little constipation caused by the anti-nausea drug, I've had no real side effects.

    http://www.prnewswire.com/news-releases/biweekly-xelodar-dosing-regimen-is-well-tolerated-in-advanced-breast-cancer-57758652.html


    http://jco.ascopubs.org/content/26/11/1797.full
    A Novel Capecitabine Dosing Schedule
    When our mathematical method was applied to capecitabine in an animal model system, the point of maximal drug effect was estimated to occur after approximately 7 days of treatment.13 The model predicts that drug delivery beyond 7 days contributes to toxicity, with diminishing anticancer benefit. Preclinical experiments of the capecitabine 7/7 schedule in xenograft mouse models achieved a maximum-tolerated dose (MTD) 1.75-fold higher than previously achieved with the conventional schedule.21 This translated to statistically significant tumor regression and a survival benefit when compared with control.21

    Hope this helps some.
    Sue
  • dinamarca
    dinamarca Member Posts: 17
    edited October 2013


    Thanks Ebru, my lip blisters have just about cleared up and I'm starting my second 14 day cycle of x today. I plan to drink lots of water in hopes of helping my body deal with toxicity.......sounds too easy I know.


    Milehighgirl, thanks for the sites. I'm definitely making copies and will bring them to onc if se's get any worse.


    Karen, sorry to hear of your stressful week........hope you have a wonderful weekend and will send positive energy/thoughts your way on Monday!


    The sun is shining on the the most vibrant colored leaves I've seen, it actually looks like the trees are lit up.......going out to enjoy this beautiful day :)


    Peace,


    Dina

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013
    Eshinal, I haven't had any of the h/f issues and few other side effects to date. I just finished my 5th round (of 7/7). I did have a few stomach issues the first go round but no nausea or vomiting. Just a "funny stomach".
  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Hi to all who are taking Xeloda!! I started this past Tuesday and by Friday, I was feeling yucky!! I don't want to get up at all. I've had a lot of nausea. I'm taking 3000 mg a day. I don't have an appetite at all; I have to make myself eat!! They found a tumor in the pleural cavity of my lungs. I had been on Faslodex until it quit working for me! Mine went from breast to bone to lungs!! No fun fighting this but still trying to do everything I'm supposed to do!!


    Anybody else had these same symptoms!! Can't wait to hear from you!! Have a good night everyone!!

  • Starlover
    Starlover Member Posts: 24
    edited October 2013


    I have mets to lungs and liver, and will be starting Xeloda this week - 6 months on Tamoxifen and Zoladex didn't work.


    So nice to have this community here to do research with and find positive thoughts!


    :)

  • Europa
    Europa Member Posts: 39
    edited October 2013


    Hello Naturelover, you are 2 days ahead of me, I started on Thursday. I found on Sunday I was very tired. Also on my second day I had a bit of nausea, but I took a compazine and it went away. I am not sure what is causing the nausea because I have been taking prilosec for my acid reflux, I was out for a while and I have not had nausea since. Since then it is more fatigue than anything else.


    Welcome Starlover, hope X is good to you.


    Euro.

  • mutherflush
    mutherflush Member Posts: 85
    edited October 2013


    Hi everyone. Just finished third cycle of X and side effects have kicked in with a vengeance.( I am on 2500 x 2 daily 14/7) Hands and feet on fire. Not been able to wear shoes for almost 2wks. Big D and upset tummy. I have to see onc on 25th and I will request either lower dosage or 7/7. How many of you have changed to 7/7 without any reduction in effectiveness. And did HFS get better. I am so down at the moment. I cant take not being able to get out and about. Milehighgirl did you have to request 7/7 or did your onc just prescribe it.


    Feeling low please help.


    HelenXX

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013
    Mutherflush, I'm so sorry you're going through this! There is no need for it.

    I was told from the beginning that if/when I experienced SE's to call the doctor's office right away. They would either make an adjustment on the meds or give me something to stop the SE's. If they were really bad, they would stop the drug and let my body recover before starting up again. I started out at 7/7. I had read and researched before starting and sort of as an aside, mentioned to one of the nurses that the 7/7 was just as effective as the 7/14 with a lot less SE's.

    That afternoon, I got a call from the nurse telling me that it was okay to do the 7/7 instead of the 7/14. I posted some research this last Saturday and there are a few links that talk about the 7/7 actually being better than the 7/14. Share these with the doc. if she feels she wants to keep you on 7/14. You're in the driver's seat! You did good getting this far so I commend you for sticking it out - I couldn't have done it. Enjoy your week off!
    Sue
  • saskie
    saskie Member Posts: 71
    edited October 2013


    Thanks for the info on the 7/7 Milehighgirl. Will definitely show it to my oncologist at next appt. Motherflush definitely talk to your onc. you should not have side effects so bad you can't walk. I have taken a plastic freezer bag and have frozen it flat in the freezer and if feet get that hot itchy feeling and I can't sleep I just put it on the bed and take feet off and on the bag until they cool down and the HFS settles.

  • Starlover
    Starlover Member Posts: 24
    edited October 2013


    Got my X-pack...I begin tonight. I'm scared about HFS, as I run for exercise...I picked up a can of bag balm from the advice here.


    Can I just run through the pain if I get HFS?


    And if I lose my appetite too, can I expect to get a 215 card? (medical marijuana) because, why not?


    :)

  • Kessala
    Kessala Member Posts: 91
    edited October 2013
    I'm on my third cycle of Xeloda. Doctor has me on a 14 days on/7 days off schedule. I have yet to be able to complete an entire fourteen day run on this drug due to hand and foot pain.

    I received a zipper pouch from the Xeloda manufacturer when I started taking Xeloda. They've enclosed not only a booklet warning of the hand/foot syndrome along with hard-to-decifer photographs showing stages of hand/foot irritation but also a sample tube of hand lotion. The booklet explains how to keep your soles and palms lotioned, explains how to avoid the syndrome by staying off your feet and keeping feet elevated while sitting, tells you how to use ice packs to relieve the pain and burning of hand/foot.

    What this Xeloda packet doesn't tell you is WHY hand/foot is happening. The Xeloda drug actually leaks out of the capillaries in your palms/soles into the surrounding tissue and is causing a chemical burn. I had hand/foot syndrome during my first cycle of Xeloda. After stopping the drug on doctor's orders I had foot pain for a full seven days and nothing I did for it helped relieve the pain. Not icing, not elevating feet, not taking an over the counter pain med, not taking narcotics. Nothing. I hobbled around here for a full seven days before the pain started to ease.

    And applying lotion to the surface of the skin? How is that going to help keep the drug from leaking out of capillaries? How is hand lotion supposed to stop the pain?

    I think those instructions to use lotion on your hands and feet is just something to keep the patient busy. It certainly doesn't prevent or cure hand/foot syndrome.

    Be very careful, Starlover. The MOMENT you feel tingling in your hands or feet (like pins and needles) stop the Xeloda and call your doctor. I feel that my doctor started me on way too high a dose and I suffered for it.

    Just my experience....

    Kessala
  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited October 2013


    On my week break after two weeks of X and have questions:


    1) is that considered one cycle?


    2) anyone resume getting periods? I have noticed a conspicuous absence of hot flashes and feel a little bit less like a robot, so I worry that my ovaries are back in action.


    3) anyone out there get an oophorectomy while on X? I was about to and my onc made me cancel. I am BRCA2 and want them out anyway.


    4) what about insomnia and fatigue? I am exhausted during the day and can't sleep at night unless I load up on Ativan. Problem is I have to take kids to school in the morning. Insomnia inspite of fatigue is my personal form of hell.


    Thanks to anyone for help.

  • Starlover
    Starlover Member Posts: 24
    edited October 2013


    Yikes, Kessala!


    I haven't started taken it yet, I ... I'm chickening out! I promised myself I'll start today, after my run.


    I'm putting off my run and wondering if I should even start this stuff...

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