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All about Xeloda

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Comments

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    Husband, thanks so much! I've just emailed my UCLA onc for her input. I had black tea this a.m., so I'm paying attention! Just stubborn, I guess, in not wanting to give up my matcha! But I very much appreciate all the research and help in understanding the possible issue with green tea and X.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited June 2017

    Hi all, MO informed me that I will start a few circles of Xeloda after radiation to prevent recurrence. Hopefully side effects won't be too bad!

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
    edited June 2017

    Hi, Stephilosphy00 - this blog thread is for those who have had recurrence and are taking Xeloda. There are a few other threads you may go to including " Xeloda and TBNC". Actually, you can click on my name and see some of the other Xeloda threads for those focused on taking it for a more preventive treatment. The ladies (and Mike) on this thread are super friendly and knowledge about Madam X. Keep up the good fight and my prayers are with you!

  • Emily-Louise
    Emily-Louise Member Posts: 26
    edited June 2017

    Is anyone on the Xeloda and Navlebine combo?

    After 10 months on taxol/carbo/valiparib my liver mets doubled in size since my last scan resulting in a liver bleed.

    I have begun navelbine xeloda oral combo today 😬 Would love to hear of your experiences.

    Thanks in advance

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    Reporting: I have been on Xeloda five days. The flare liver pain lasted four of those, but if it means the stuff is working, I welcome it. Luckily I have escaped nausea so far. It's a little surprising since I am prone to motion sickness and pregnancy nausea. I have been avoiding foods, such as high-fat ones, that could potentially upset my tummy for breakfast and dinner when I take my X pills. So I hope knowing that not everyone gets nausea will encourage those about to start X. I do have anti-nausea pills in case I need them. To help avoid hfs, I am avoiding extremes of heat, pressure, or friction on my hands and feet, without altering my life too much. For example, it a jar lid is tight, I'll get help opening it. I'm taking warm, not hot showers. Things like that.

    I, too, am not used to eating meals at set times, but I feel more confident keeping to a schedule with this drug. I'll

    probably get lax about it after a while, though! So I decided on breakfast at 9:30 am followed by pills, and second half of dinner at 8:30 pm followed by pills. This gives me 11 hours between am and pm doses, and 13 between the night and morning doses. That is the minimum hours of overnight fasting named in some research being discussed elsewhere on these discussion boards, that indicated that a long-enough overnight fast could be anti-cancer. It also gives me two hours before bedtime, so I don't get GERD from lying down too soon after eating. So complicated! What I find most inconvenient is that I like to be able to stay in bed until I have cobbled together 8 hours of sleep, but now I have to get up to eat and take pills.

    Deanna, so glad you have recovered from your ordeal. Do you know if dehydration is a particular Xeloda risk in the absence of diarrhea or vomiting?

    Following the tea discussion.

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    Shetland, I don't believe dehydration is listed as a SE of X, but quite a few of us on it -- especially in the Xeloda FB group -- report that it's difficult to make ourselves drink sufficient water because it tastes metallic of just "off." So I think it's important to be aware of how much water you actually are or are not drinking each day. I know even when I drink several glasses, I still wake up often during the night needing water, and also am extremely dehydrated first thing in the a.m. And when I got so severely dehydrated, I had been running a fever of 102 for 48 hours, which probably was a factor.

    And you're not alone finding it frustrating having to get up early enough and make yourself eat something, just to take the med. I'm on my 4th cycle, and still not in a comfortable groove.



  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    I try to have brothy soup, either homemade or lower sodium canned, a few nights a week. It kills two birds, if you will, because there are nutritious vegetables and legumes as well as fluid from the broth.

    Now that it's summer, we have to work harder at getting fluids down.

    BTW, I've gotten HFS on my cheeks from time to time, too. Incidentally, every limb seems drier since I went on X over a year ago.


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited June 2017

    Lita, what does hfs on your face look like? Dry patches,a blister, a sunburn? Just want to know what I should be on the lookout for.

    Stefanie

  • mike3121
    mike3121 Member Posts: 280
    edited June 2017

    Just a quick note. My wife often has different SE's, well, except for the ever present H&F. Not SE's all at once mind you; bad headache one day, rash the next, etc. My wife is made of stern stuff and can handle these but just wants this stuff to work. Great news triple negative killer Katruda approved by FDA!

  • jillts
    jillts Member Posts: 12
    edited June 2017

    Shetland Pony, I went through a similar experience getting my first dose. I thought I would lose my mind with all the phone calls I had to make. I had my first few bottles shipped to my house but have changed to ship to my pharmacy to pick up. That way I don't have to worry about being there for delivery or if something happens to it.

    I also wanted to say that I'm five cycles in and I have no HFS or fatigue. Of course I'm knocking on wood as I say this but I feel almost as if I'm not on anything at all. I am extremely lucky, I have no SE at all. Well, I do have more frequent potty action, but I can handle that. I don't leave the house until I have gone at least twice.... preferably three times. lol

    I had my first scans last week and it looks as though X might be working. Although I do have more sclerotic lesions, there seems to be no uptake or activity in them so hopefully they are healing. We should know more with the next scan.

    Good luck to you!

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    Stef, yes, it can look like all three: red, dry patches that sting, maybe slight blistering. Xeloda makes us very sun sensitive so be sure to wear a hat or use sun screen. I use Cetaphil Calming Wash on my face. No wash cloth, just the tips of my fingers. I also use Eucerine lotion on the cheeks and Eucerine healing cream around the corners of my mouth. Aquaphor makes everything sting, so I stopped using that on my face.

    Jilts, not everyone gets hfs. If you go to the online literature for Xeloda, it gives you the percentages. More than half but certainly not 100% of patients get it it, so you're among the lucky few because you'd have it by now if you were going to get it. For me, the big four have been diarrhea, hfs, fatigue, and some nausea. Since I went to a 7/7 cycle, the diarrhea and nausea are better, but they haven't completely disappeared.

  • Nel
    Nel Member Posts: 597
    edited June 2017

    Part way thru my second cycle   Missed a dose last night.  UGH   If I don't leave meds out in front of me I forget and they were in my bag.  Had taken them to work to get the AM does in and forgot to take them out of bag Chemo brain I believe.  No significant se's as yet, itchy palms but not read or peeling  

    My hair does seem to be thinning   Anyone else??  

    Be well

    Nel

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited June 2017

    Nel, my ONC says it really important that I don't miss any doses. Since I am forgetful, I've set an alert alarM on my phone.. thankfully,it reminds me every time.

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    After having to stop a few days in fist cycle @ 4000mg, then stating back at 1500, I built up to 3000, then it was time for my week off. Started second cycle Friday @ 3000, and thought I'd try to bump up to 3500 today, but each day my feet have gotten redder again, and last night, for the first time, my palms are red, so I'm not gonna try going higher for now, will wait and see how bad it's gets. Don't need anymore added problems this week, family will be coming in town on the weekend, for my moms funeral on Monday. Maybe I'll try after that, if it hasn't gotten too bad.


  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    I put my X in a baggy to take with me to my son's the other day. Then left the bag sitting on the counter. Realized it when I was almost there, and had to turn around and drive back hometo get it. Hate chemo brain!

  • Nel
    Nel Member Posts: 597
    edited June 2017

    I have to have it right in front of me!!   May have to begin to set an alarm.     If they know we have chemo brain - why do they make this so difficult!!!

  • magdalene51
    magdalene51 Member Posts: 2,062
    edited June 2017

    I've been on so many pills for so long I've developed a system. I have 5 one week boxes and a stacking holder of small containers. Morning, noon, evening, night, and my thyroid dose which I take in the middle of the night. Every afternoon I fill the stack from the week boxes. With the X, I just added one more container to the stack, and each day it gets 7 pills - 4 morning, 3 night. So I always know if I've taken it, and the stack always goes with me. I think I have a picture.

    image

    This is an old picture but you can see the system. At the top is the stacking containers, which are color co-ordinated to the week boxes for the most part. (Sometimes hard to find colored week boxes tho!)

    image

    This is what the stacking containers look like, they screw onto one another from the bottom, they're about the diameter of a medium prescription bottle. They're inexpensive, available at Walgreen's, who by the way have a great pill reminder in their app, even if you don't use them for prescriptions.

    It's been a great way to keep my many meds organized and to take them as needed. Takes me about 15 minutes once a week to put them all up.

    And that's how I do it.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    Jillts, thank you for sharing your encouraging experience with Xeloda, and I hope your next scan is NEAD. Five cycles with no hfs is great. Of course I'm hoping my current state is not just beginner's luck and that I can be like you. I just have the not-quite diarrhea, which I manage by eating stuff like bananas, applesauce, and rice. Yes, last year I had my specialty med shipped to a local pharmacy so it would be delivered early and kept safe. This year my insurance does not give me that option.

    Lol, Nel, that is ironic that we chemo-brain people need to remember to take our chemo pills. I set the phone alarm, too. And I keep a spare dose in my purse. Mags, I bow to you.

  • SusanR
    SusanR Member Posts: 59
    edited June 2017

    Does anyone here have a link to literature or studies showing the succes of either reducing the dose or changing the frequency of X.  I just finished Round 3 yesterday, each at 4000mgs/day 2 on, 1 off and I cannot continue at this dose and/or frequency.  Last round had me down for days with severe nausea that led to Day 14 vomiting and heaving for a few hours.  I skipped the last dose for that night. This round the nausea has been severe for about 5 days and last night I had a few things happen that convinced me not to take my last dose again! I never once vomited during IV chemo and only had bothersome nausea at the most. 

    I keep reading the posts on here where some will say they have very few se's and some have hfs (so far I am not seeing that thank you God!) or fatigue, or diarrhea and I'm thinking I'm reading the wrong thread! LOL.  I have no hfs yet, no real diarrhea to speak of, just urgency when the need arises, and some fatigue which luckily I sleep whenever I need to.    However, the nausea is about to do me in!  

    After Round 2 and the vomiting, my MO gave me a script for Compazine.  She also mentioned the option of going to 1 week on, 1 week off.  She didn't mention lowering the dose, but I'm sure we'll talk about that too. Please don't think me as bragging, but I am your typical Type A overachiever and felt sure I would take the maximum dose with the minimum side effects and manage it all well.  I bought the white socks, gloves, and lotion for hfs, I bought sunvisors, floppy hats long sleeve cover-ups and spf 50 for sun sensitivity and read every X post on this site from page 1.  Other than some fatigue, I have been brought to my knees by nausea!!   So, this round on Day 10 the nausea started to get to me and I took a Compazine once in a while. By day 12 I was taking it every 6 hours and could barely lift my head, but if I closed my eyes the room was moving.  Last night, I had some scary blurred vision in one eye and had my friend stay on the phone with me in case a seizure was coming on because it almost seemed like an aura. It started in my peripheral vision and then went to the entire sight of the eye.  It looked like there was a ceiling fan spinning really fast, but the ceiling fan wasn't on.  It passed after about 1 hour and I started wondering if it is the Compazine or the X?  I skipped my last dose of X last night and didn't take any Compazine.  This morning I feel like I am recovering from the flu but definitely feel better.  I will call the Dr. and let her know what happened but like last cycle, they won't know what to do for me right now because the episodes are over.  I see her next Wed. for my regular visit and we'll talk this all over and make a new plan.  I'm not one to ignore things like this so please know I won't let this rest as I know this is not normal.

    So, in the meantime, if any of you can tell me what the studies say about reducing the dose and/or frequency and how it affects time to progression, I would truly appreciate it.  I know many of you are on different doses etc. and you are all just a wealth of knowledge and information. 

    I do hope I haven't rambled on too long here, but when I think of who I could tell all this medical crap to, all I can think of is you lovely ladies because you just "get it"!!  Thanks for listening!

  • seagan
    seagan Member Posts: 32
    edited June 2017

    SusanR - if medical cannabis is legal in your state, I've found vaping it extremely helpful for quick relief from nausea (and capsules for longer relief) without the side effects of meds like Compazine. I actually needed it most when I was having radiation to my lumbar area, which caused really yucky nausea (and other GI stuff) b/c the rads have to go through your intestines etc. I get nausea on Ibrance usually only when I forget to keep something in my stomach; it really seems to jump on an empty stomach. Your issues with it sound more severe, though, so not sure my tips will help but just in case!

  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    SusanR:

    The USC Hospital routinely gives xeloda at a flat rate dosage of 1000mg 2x daily, two weeks on, one week off. They say they get as good of results as anyone.


    http://www.gotoper.com/publications/ajho/2015/2015...


    Article about 2000 mg 2x daily, 7 days on 7 off.


    https://www.nature.com/articles/npjbcancer20166



  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    Susan R,

    I'm on X 7 on/7 off 3000 per day. I was having the WORST diarrhea on 14/7 that would last even into my week off. Nausea was kept in check by med marijuana. Hopefully you're now going into your off week. My MO would only see me on off cycle weeks. Tell her that lots of people are on the 7/7 dosage and are doing quite well. (Me, 14 months from dx and still on Xeloda 😁)

    Stage 4 is all about keeping Mr. Cancer in check but NOT destroying your quality of life!

    L


  • AmyQ
    AmyQ Member Posts: 821
    edited June 2017

    Susan, I agree, quality of life over quantity and yours sounds positively dreadful right now. I am so sorry. I hope you can talk to your onc and ask if she'll reduce the dose to 1500 2X a day for two weeks. You poor thing. I don't know anyone who likes to vomit, so doing it for so long and with such intensity is just awful.

    Take care and good luck - please keep us posted.

    Amy

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    For those of you getting relief from medical MJ, what kind are you taking? I'm looking for help with nausea and pain

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2017

    I adjust my own X when needed. I started out on 7 pills a day for my first cycle and thought I was going to die. I don't get why they start us out on a max dose. I take 5 day now. Onc wants me to try 6, but I will wait until my next labs. Last labs TM's were up about 30%. I was out of my MMJ and hoping that is the problem. He tells me it's my ship and I am the captain! I love him!

    Mimi, there is an awesome thread on FB about MMJ and treating BC patients. There is a lot to know about MMJ. How it's extracted. What part of the plant they use. The percentage of CBD/THC, etc. You can also join Aunt Zelda's. For ER/PR+ they recommend CBD and THC to be taken separately.

    Fighting breast cancer with cannabis. Run by a gal whose mom has BC.

    https://www.facebook.com/groups/158067737931960/permalink/326198867785512/?comment_id=328899647515434&notif_t=group_comment_reply&notif_id=1497703061506943

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    Thanks Goldie. I know there are different strains and all that, and with ER+ PR+ you want low THC. Was hoping to find out what actual kinds people with the same chemo are taking and what SE's it helping

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    I've recently been using Grandaddy Purple to help with sleep and pain. Very smooth and doesn't have strong mj taste at all...I make my own edibles with it. It's an indica strain I believe. Sativa strains can often cause anxiety.


  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    Thanks Lita, does the same one help your nausea? Sick

    The sides of my big toes are starting to blister, no more closed shoes for me. Just what I want to do, walk around in public with socks and sandals. Shocked

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2017

    Mimi- I too had big toe issues. Wire open toed shoes fir over a year and a half. I eventually made my way to a podiatrist and had toe surgery ( treated it like an ingrown toe nail and been fine ever since. Might be worth s trip to one to see if they can help. It took me too long to do this. Hoping my experience might help someone else.


  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2017

    I haven't even gotten up fir the day and my feet hurt already. glad I only havec3 days left this cycke

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