All about Xeloda

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  • melmcbee
    melmcbee Member Posts: 371
    edited January 2020

    Kattysmith it is probably more of lotion on my hands or something like that. I agree that my hands haven’t started burning or peeling yet. Thanks for everything. Thankful yall are here to talk to.

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2020

    Hi friends, sitting in the chair getting Ixempra infusion while DH is filling Xeloda prescription. MO is starting me off at 3500. Yikes! Between the two, they cover about every SE there is. I’ve mentioned how nervous I am about this course, but have received all kinds of messages of support, so thank you for that.

    Getting back to basics, can y’all advise what your timing is am and pm for dosing? Also what kinds and how much food, esp breakfast, you eat to take Xeloda. Is yogurt enough, or do I have to add toast? Is protein a must, or is fat more important?

    Thanks for your support and guidance. Hugs from JL.

  • snooky1954
    snooky1954 Member Posts: 850
    edited January 2020

    Jaylea. My NP told me the most important thing is that the doses are 12 hrs apart. And she said you don't have to eat a big meal. She said a piece of toast, a banana, or have your desert a few hours after dinner and take your pills then.

    She also is pro-active, she said if the lines in your hands start to turn red (even a bit) she wants a phone call. She said it's a lot better to stop Zeloda for a few days than to let the condition get out of control.

    I wish you the best on this treatment and hope that it is as easy for you as it's been for me

    God Bless

  • Kattysmith
    Kattysmith Member Posts: 688
    edited January 2020

    Hi Jaylea,

    I'm on 3000 per day. We eat dinner early, around 6pm, so I have my morning dose around 6am. Even though I get up around 4:30 or 5am, food isn't appealing at 6am, but I've found that if I have a very small amount of cereal or yogurt or leftovers, it seems to work out fine. I take my evening dose right after dinner. No one has ever told me I needed to be eating anything specific...I believe the main purpose is to protect the stomach. Drinking the full glass of water is important to me, as it should help with absorption and I'm dehydrated from not having had any water overnight.

    Wishing you all the best on all fronts of your treatment!

    Katty

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2020

    Jay,

    I am now on 2500mg a day. I take 3 pills in the morning at about 8 - 830pm I take them 20-30 min after eating (like Denny)... I take my other 2 pills 25-30 min after dinner..usually 660pm. I don't get to spread the dose out for12 hours because I fast from 7pm till 830am which is isn't even enough but best I can do.


  • denny123
    denny123 Member Posts: 1,529
    edited January 2020

    I have been on X for 2 years. 10-12 hours apart is fine. The pills should be taken after a high protein meal or snack for best efficacy.

    I didn't complain about my SE's until my feet got really sore and red. Then I was given a 2 week break and went down from 14 days on and 7 days off...to 7 on and 7 off.

    I am taking 2,000 mg a day. Even at this low dose, my hands and feet get very sore on and off.

  • Jjzn
    Jjzn Member Posts: 114
    edited January 2020

    I am on my second cycle of xeloda. I am currently 14/7 with a dose of 5000 per day. Taking 5 pills am /5 pills pm. I have only noticed a little hand foot. But I typically run cold so was wondering if that was helping me? Do the effects compound or is the first two cycles a good indication of how you will tolerate hand foot in future doses? Also since I have not seen my oncologist since I began xeloda which week is going to be the lowest for low white blood count? Will it be the off week?

    Thanks for all the info. You guys are very informative.

  • melmcbee
    melmcbee Member Posts: 371
    edited January 2020

    Jjzn, Im on my first cycle so I dont know anything yet but my oncologist wants me to do blood work on my off week.

    Thankful to have yall as a support. Ble

  • Kattysmith
    Kattysmith Member Posts: 688
    edited January 2020

    Jjzn,

    During my first cycle (in early Nov) my heels started to redden and hurt, but that abated after a few days. I didn't really start to have problems with hands until 2-3 weeks ago, but they haven't gotten any worse: reddish-purple coloration, minor peeling which seems to have stopped, loss of sensitivity in fingertips and loss of fingerprints. No skin-splitting etc, though, and I can do most things without any problems. Sometimes I get my hubby to open a twist-off cap, but that's about it!

    No more trouble with my feet since November.

    I know with other treatments, like Ibrance, the off week is for recovery of WBC, so I'm assuming it is the same with Xeloda.

    Hope all goes well!

    Katty

  • melmcbee
    melmcbee Member Posts: 371
    edited January 2020

    Hey has anyone had mouth sores from Xeloda. I have a spot thats been bothering me for a few days and Im assuming its from Xeloda. But is it too quick for mouth sores since im on my first cycle? The only reason I ask is I have h

  • melmcbee
    melmcbee Member Posts: 371
    edited January 2020

    Hey has anyone had mouth sores from Xeloda. I have a spot thats been bothering me for a few days and Im assuming its from Xeloda. But is it too quick for mouth sores since im on my first cycle? The only reason I ask is I have had Onj that was bad and anything with my mouth flips me out. I did have bad mouth sores when I did chemo the first tim

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2020

    Jjzn, that is a huge dose, OMG! I couldn't handle 3500 mg (7 pills) I don't think I've heard of anyone on that high of dose. On the 7 pills, I had to quit, the cramping was almost unbearable and the diarrhea explosive.

    I never got mouth sores, was on X for almost 5 years.

  • Jjzn
    Jjzn Member Posts: 114
    edited January 2020

    Goldie I thought it was a big dose too. Especially since I have not seen anyone else with that dose. I asked both the pharmacist and my oncologist and they said that was the normal starting dose. So a little confused by it. I am in the process of finding a new oncologist so it will be interesting to see what the other oncologists suggest.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2020

    Jjzn, I'm sorry, but I don't think that is the "normal" dose. Especially if it's 10 pills at 500 mg ea. If you get horrible SE's, I reduce the dose immediately. When I did the 7 pills, I told my husband, I am NOT doing this, I'd rather be dead! It's YOUR body, not theirs!

  • denny123
    denny123 Member Posts: 1,529
    edited January 2020

    Jjzn, I agree with Goldie. That is way too much.

    Mel-I do get mouth sores, but it depends on what I eat. I have been on chemo for 18 years, so I have to be careful about spicy foods, etc.

    I will also have an area in my gums that will be wore for a few days, and it dissipates. The goes from one side to the other. I go to my dentist often, and everything checks out okay.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited January 2020

    Jjzn,

    I was told by someone - not sure if it was the pharmacist or someone on here that the dosage was based on height/weight, but that sounds crazy high! I weigh around 127 and am now 5' 1" and am on 3000 per day - 3 in the morning and 3 in the pm.


    Mouth sores are the worst. I was advised to rinse my mouth every day with baking soda and water 3-4 times a day, so you might try that to start!


  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2020

    My MO says it is based on height and weight as well,.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2020

    My revered onc said that it is "standard onc practice" to start at the highest dosage and see what a patient can tolerate and then dial back from the starting dosage. That dosage you're on sounds outrageously high to me!

  • Jjzn
    Jjzn Member Posts: 114
    edited January 2020

    Katty

    If it is based on height and weight then that would probably make sense. I'm around 170 so I have a few more (extra ha ha) pounds then you do. So far I've only had a little hand foot, and some stomach pain which I'm going to discuss with oncologist tomorrow. Not nausea more like cramping. But I am only at the beginning of cycle 2. I also have a lot more bone pain then I did when I was on verzenio so I'm not sure if that is a good or bad sign.

  • Naesha
    Naesha Member Posts: 44
    edited January 2020

    My ONC also told that X is based on height and weight.

    I have a question to all the ladies. Can i still go to work everyday taking Xeloda? Can anyone of you please share your experience on this. I am planing to get back to to work. I used to work remotely in previous job so i was never concern about the side effects of the treatment. With the new job I need to go office everyday so not sure how would my body take it on X.

    Take care ladies.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2020

    Naesha,

    As far as going back to work I think you would have to play that as time goes depending on your side effects. I mean from what I have read hand and foot can get bad so it may prevent you from working.


  • denny123
    denny123 Member Posts: 1,529
    edited January 2020

    An office job might be okay, depending on your dosage. I am still able to function daily but I am only on 2,000 a day.

  • Naesha
    Naesha Member Posts: 44
    edited January 2020

    I am on 3000 mg dose per day. Third week with X off has been good so far.

  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2020

    I'm starting tomorrow on Xeloda. Happy to find this topic to see what to expect

  • arolsson
    arolsson Member Posts: 94
    edited January 2020

    @vilma65, just wanted to wish you luck. Xeloda kept me stable for over half a year--one of the only chemos to have any effect at all--but I had to do 2 dose reductions for the hand-foot syndrome and then it stopped working. But don't let that scare you, the symptoms do reverse quickly once they reduce or in worst case put you on the next chemo in the arsenal. Ice, ice ice and gabapentin helped with the pain somewhat. Cotton gloves all the time, plus the creams suggested. B12 helped a little, also ashwaganda. I would caution against long term high dose ibuprofen or acetominophen since these are harder on your liver and your gut than you think. If you do have them give you something to protect your stomach lining at least, you'll be glad for this down the road.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2020

    11/17 4 am/3 pm 14/7

    Tried 7/7

    12/17 3 am/3 pm

    2/18 went to 1 am/1 pm no breaks.

    Have been on this dose since with planned breaks for vacation and unplanned due to virus or HFS. Hands and feet usually get worse after 3 months. It’s the almost the same number of pills in three months of 3 am/3 pm 14/7.

  • Naesha
    Naesha Member Posts: 44
    edited January 2020

    Zillsnot4me when you said that it get worst after 3 months, can you please explain what worst is it , i mean is it dry or numbness or not able to walk or type? I am planing to get back to work but after reading all the update on the hand-foot syndrome I am scared :-(.


  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2020

    Arolsson , thank you! I just had my first dose, so looking forward to see how it goes

  • lizo1
    lizo1 Member Posts: 94
    edited January 2020

    It's been a while since I've logged on.

    Lynn - Great news about your recent PET scan!!

    Liz goes for her 3 month CT scans tomorrow. We're praying for good results.

    Grant.

  • snooky1954
    snooky1954 Member Posts: 850
    edited January 2020

    Naesha, Hi welcome to the thread. Wanted to calm your fears about hfs. Everyone doesn't get it. I've been on Zeloda for 5 months and have no signs of it. The first two cycles were the worst for me. On the second week my fatigue was extreme but now it's becoming less and less. I have no stomach upset nor the big D. For me, Praise God, it's an easy TX. I pray it's the same for you.

    Oh, I'm on 2000 per day