All about Xeloda

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  • Ihopeg
    Ihopeg Member Posts: 92
    edited March 2019

    Hi everyone,

    Just finished first full week of Xeloda. The only side effect I have is severe constipation. I have been taking miralax and did a glycerin suppository last night and nothing. It's been like 5 days. Called Dr. hopefully won't have to go there. Also, I have been drinking extra water and having a lot of fiber rich foods. Any suggestions will be appreciated. Thank you, Ilene

  • ADDK
    ADDK Member Posts: 70
    edited March 2019

    Lhopeg, I don´t know the drugs available in the US. I take Xeloda and pain killers - both cause constipation. I was told that I need to take to kinds of drugs - one to soften the stool, and one to activate intestine movements. The latter is prescription-only in my country, and I take it twice a day. The combo works for me.

  • neogirl
    neogirl Member Posts: 54
    edited March 2019

    Ihopeg, my nurse advised me to take Colace for the constipation. I only had exlax chocolate squares so I ate 1 of them instead. Got relief within 6-12 hours. Im good now with that problem.


  • s3k5
    s3k5 Member Posts: 411
    edited March 2019

    Hi,

    I would like to add what works for me -

    I was asked to start moisturizing my feet and hands every day. I bought a jar of organic shea butter (no other chemicals or additives in it) which I use every night on my hands and feet, and then wear gloves and socks. During day time, I use plenty of moisturizing creams. This definitely helps minimize burning/cracking of hands and feet.

    I take Xeloda with food since I had nausea when I took it on an empty stomach. For constipation, the PCP recommended Activia yogurt (2x/day) which definitely helps. If this is not available, I take Probiotics (2 chewable gummy bears) from Costco. This has definitely helped me.

    I am on one week on/one week off schedule, which is easier for me than the '2 week on/1 week off' schedule that many ladies are on. Will find out if it is working when I get the scans in 2 months!

  • denny123
    denny123 Member Posts: 1,531
    edited March 2019

    ADDK- According to my specialty pharmacy, we should not take the pills until 30 minutes after a meal for the best efficacy.

    ihopeg---4 years on Kacyla has put me into permanent constipation, I guess.  Every evening I take a dose of Miralax, and 350 mg of generic stool softeners.  I have the 100 mg pills and 250 pills.  So I  can add or reduce the amount as needed.

    The first time that I can't "go", that night I take a dose of Philips MOM.  That always helps me.

  • HLB
    HLB Member Posts: 740
    edited March 2019

    ADDK not sure about the shoes, you want them to be tight so as not to cause friction, but of course not so tight as to be too small. I always had bright red hands and feet but they rarely felt sore or painful. Personally I don't like tight shoes and I have to also watch my toenails as they will become ingrown and painful. 

    For constipation I have always found magnesium to work. I take 500mg per day just to prevent it because most meds give me that problem. I read that most of us are deficient anyway.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    Why oh why do I always seem to do opposite of the norm? Am I the only one who has loose stools on X? If so, I thank my trend of doing the opposite. Constipation is one of the worst SE for me. So sorry so many have to deal with it constantly.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2019

    You're not the only one, Grannax. Does this make us loose women? (Cue Lucille Ball in her wicked city woman role.)

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    Shetland too funny. Yes, Lucy and I have a lot in common. Glad you and I have this in common. Loose women. 😂

  • ADDK
    ADDK Member Posts: 70
    edited March 2019

    HLB, thanks for replying - I´ll go up half a size just to be on the sure side.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    I have an unknown path ahead of me, as all of us do with our DX. I’ve at long last decided to fire my incompetent MO. She’s not even a BC specialist, why did I choose her her over two years ago? Convenience. I have not trusted her for over a year. I thought I was staying put by making things easier for my family and friends. Wrong.

    I realized on Friday that by stuffing my feelings I was acting out, my feelings were coming out in hurtful ways to my family and friends. Not acceptable.

    I have to feel safe again. I have to feel I’m where I’m supposed to be. I have to stop denying my gut instincts. Inconvenient or not, I’m going to find an MO at UTSW in Dallas. Pray I can get one who “matches ‘ me. Who won’t tell me she prefers her patients to not have copies of their reports, who is sarcastic to me, whose office is run with no effenency, who actually said I don’t like it when my patients are knowledgeable and literate.

    So, the big unknown is will the new one keep me on X? Who knows?

  • neogirl
    neogirl Member Posts: 54
    edited March 2019

    Grannax,

    Wow, I didn't know you had ONC problems like that. Good luck in finding a good one. Im sure you will find a much better one than what you had. She sounds horrible.

    Kathy











  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2019

    Good for you, Grannax! Do you have a process in mind for identifying the best person? You're very wise to go to a breast cancer specialist. Keep us posted!

  • nkb
    nkb Member Posts: 1,561
    edited March 2019

    Grannax- You are right- you must do this. Your MO has to be on your side, has to give you hope and empathy and the visit has to be a give and take. (For harsh reality you can get a second opinion from time to time). I always loved my MO, but, After my second opinion I so much more appreciate her- what a kind heart she has, and how important hope is- how her vast experience and knowledge coupled with heart has made her a perfect for me.

    On the other hand I did fire my new primary care doc- she was a sparring partner- don't need that.

    I have been in a meditation study (DH is too ) and it is helping me- also reminding me to not let my internal struggles with this disease seep out in destructive ways to family and friends.

  • Nancylm
    Nancylm Member Posts: 83
    edited March 2019

    A dose of mineral oil might get things started and Ducolax daily.

  • Nancylm
    Nancylm Member Posts: 83
    edited March 2019

    Good morning all. I thought I would be on Xeloda by now but mo wants scans first. Currently I am on aromasin without the afinitor. I should know my treatment plan by the end of the month. Mo also ordered genetic testing.




  • AllyBee
    AllyBee Member Posts: 99
    edited March 2019

    Hi everyone,

    I've recently stated xeloda, this is my first time posting here. I was wondering if anyone has tried fasting while on xeloda. I used to do an 18 hr fast daily (only eating between 12 and 6pm) while on IV chemo and felt really good. It also helped me keep my weight under control.

    I just don't know how I would make it work on xeloda if it has to be taken with food


    Ally

  • helenlouise
    helenlouise Member Posts: 363
    edited March 2019

    Hi ally, my understanding is that you need to take Xeloda with food because the drug is activated by the digestive process. No food no drug into your system. Not sure if it has an adverse effect in an empty stomach. It's more about getting the drug into your system.

    Good luck x

  • brc
    brc Member Posts: 5
    edited March 2019

    Allybee. I was on Xeloda for 12 straight years then switched to Ibrance/Faslodex combo for 14 cycles and now back on Xeloda. So I know this drug pretty well. You need to eat food just before taking the pills as instructed. Mainly it helps it get absorbed into your system and also it lessens the likelihood of upsetting your stomach. They say it should be 12 hours apart but I take it somewhere between 10-12 hours depending if I get to sleep in. I also take it just after the meal as it says within 30 minutes of eating and I worry I’ll get busy and forget.

    This worked for me once and hopefully it might just work again before I have to move onto iv chemo. Though I am going to see it oral vinorelbine might be an option if the Xeloda doesn’t work.

    I would think that taking your Xeloda at 12 and 6 would be too close together. I would get advice from your oncologist as they would know the best way to proceed.

    Good luck

  • AllyBee
    AllyBee Member Posts: 99
    edited March 2019

    Thank you Helenlouise and brc. I thought the upset stomach may have been the reason for taking it with food, if it's for absorption then I don't want to mess with that.

  • wallaby715
    wallaby715 Member Posts: 183
    edited March 2019

    Wow, Grannax, that is terrible! This is exactly why I have changed insurance coverage three years in a row (Medicare Advantage plans) to stay with my MO!

    My oncologist's office keeps changing who they contract with on an annual basis and she left the first practice so I had to suck it up for 6 months until I could change insurance and follow her! That was a depressing 6 months as I didn't feel comfortable with the MO who took over. My MO will give me what ever information I ask for, will explain anything, and is very upbeat. I think it makes a big difference in a patient's attitude. Good luck finding a new MO!

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    Good news, I have a new MO. Her name is Dawn Klemow at UTSW Dallas. My PCP knows her. So, on March 25 I will see her for the first time. I'm in my week off of X. I'm sure she will do scans before she decides.

    I'm doing the happy dance.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2019

    YAY...great news, Grannax!

  • bigbhome
    bigbhome Member Posts: 721
    edited March 2019

    Wonderful news, Grannax!

    Hi Joyner! I am sorry to see you here, but glad that you are doing well. Don't forget me in the locks!

    Claudia

  • denny123
    denny123 Member Posts: 1,531
    edited March 2019

    Ally-I would never fast while on chemo since during my 17 years of chemo, I have never heard that it is beneficial.

    My specialty pharmacist said that X should be taken 30 minutes after a high-protein meal for the best efficacy of the chemo.

    Grannax- Diarrhea is the most common SE.  I bought a big bottle of Immodium before starting, but I sure don't need it.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    Joyner, bigbhome Good to hear from both of you. You both know all too well how long I've needed to make this change. It feels so freeing already. I already have my portal set up. Just one of my issues w my former MO. Communication. The intake nurse was efficient and sent me her email address. Former Dr did not even have a portal! What?!?! Sometimes it took days to get any type of response from a phone call. I sure won't miss that.

    Give me an update on what's going on with you two.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2019

    Denny Since I'm off of X, I've gone right back to my normal......constipation. Boo

  • dorimak
    dorimak Member Posts: 89
    edited March 2019

    Brc I am to start Xeloda. Talked to pharmacist today about side effects and results of trials and ended up feeling very low and progression free survival wasn’t great. I know we all have different response but your 12 year story made my day. also sounds like you were able to manage side effects. Wishing you a long and happy quality life.

  • bigbhome
    bigbhome Member Posts: 721
    edited March 2019

    Grannax, After a Pet Scan in November with mixed results, we moved me up to 3months scans. I got the results today. It asked way more questions than it answered. My case is going to go in front of the Md Anderson tumor board in the next two weeks and hopefully we will get more information. In the meantime, I am getting a Ct scan of my face due to an uptick of jaw pain where the MBC presented the first time. I have to say that I'm praying that I don't have to come off Xeloda. I find it so much more manageable than I/L. . I wanted to let you know that I followed your New York trip and you looked amazing! I'm so happy that you are representing us! I'm also relieved that you are getting a new MO.

    Claudia

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2019

    You go, Grannax! Glad to hear you have a better onc now.