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Xeloda Group - Jan/Feb 2018 (Early Stage)

24567

Comments

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi everyone! Met with my MO this morning, blood test was good, neutrophils 1.54, white cell count L3.0, red cell count L 3.8. no major issues and will start 3rd round tomorrow. My MO reminds me that if diarrhoea happens 3 or 4 times a day , or skin cracks on my hands or feet then stop X immediately. He also said that in case I have to stop X due to SEs, I will start radiation therapy and then go back to X afterwards to complete the full course (8 rounds) hopefully.

  • LeahBarrett1
    LeahBarrett1 Member Posts: 4
    edited February 2018

    so happy to hear that you are so far tolerating xeloda. what's your daily dose?

  • beauz
    beauz Member Posts: 113
    edited February 2018

    3300mg per day.

  • LeahBarrett1
    LeahBarrett1 Member Posts: 4
    edited February 2018

    thank you - sorry if you had already shared that info and I missed it somehow (chemo brain). Smile

    I'm currently taking 3000 mg/day and start my 3rd/8 cycles next monday.


  • kmajor
    kmajor Member Posts: 68
    edited February 2018

    Hi everyone, I'll be starting 4000 mg of Xeloda on Monday with 2 weeks on and one week off. Has Xeloda slowed down yalls hair growth? Also is there a certain kind of lotion y'all been using for your hands and feet?

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Kmajor- My MO recommend urea cream. I copied this message from the other topic.

    I'm using 40% Urea which I got off amazon. If you ever get to this place, check the ingredients of the Urea40%, some have parabens in, and some don't. The kind I"m using now is called "UREA 40".

    Leah - yay! A week without X.

  • LeahBarrett1
    LeahBarrett1 Member Posts: 4
    edited February 2018

    I, too, was told to use 40% urea cream which I am dutifully applying every morning and every night. so far so good. and, not noticing any change in my hair growth since starting xeloda.

  • beauz
    beauz Member Posts: 113
    edited February 2018

    hi all. My hair is still very short, can't tell if X has affected the growth. As long as my hair doesn't fall off again, I am okay. My nurse also said to put plenty of cream on hands and feet before wearing cotton gloves and socks to bed.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2018

    Hmmm, my tumor marker (27.29) went up from 5.3 to 12.9 after having been on Xeloda for 6 rounds. I am wondering if it is caused by the inflammation induced by Xeloda.

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Stephilosphy, I haven't had any tumor marker checks. When should one start tumor mark test, how often? I didn't know X can induce inflammation either. I do hope you doing well.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited February 2018

    is tumor marker a standard item to check during Xeloda? My oncologist didn’t mention it.

  • chelsea5
    chelsea5 Member Posts: 46
    edited February 2018

    Thanks for this thread. I just finished day 5 of Xeloda and feel like I could punch someone in the face. I have been agitated all day 😡 I am hoping this will not continue. I have 8 rounds (14 days on, 7 days off), 5000 mg per day. Thankfully no other bothersome symptoms at this point. My hands and feet are hotter, but I have had the neuropathy SE since neo-adjuvant AC/T last summer, so it feels about the same. My eyes burn too which is new. I'm so irritable 😠

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi Chelsea, sorry about your symptoms. Xeloda can be drying, there were some days that I felt my nostril very dry. I also read from other tread that someone felt very thirsty. You are the first one that I noticed who is on a heavy dose of X and Femara at the same time. I would make sure I drink plenty of water, go to bed early (prefer before 9pm) and ring MO if the symptoms bother you too much. How was your AC/T experience, any other side effects apart from neuropathy? Wishing you a smooth journey.

  • chelsea5
    chelsea5 Member Posts: 46
    edited March 2018

    Thank you Beauz. I read your post first thing this morning and took your advice by drinking twice as much water as yesterday. Today I felt Much better. Not agitated like yesterday. I appreciate being able to reach out.

    As for AC/T, that was a whole different ballgame than Xeloda. I had an RX which handled the nausea wonderfully. My MO was accessible as I had anemia due to low WBC which caused breathing difficulties (that was the scariest part). Joint and bone pain after Neulasta shot. Fatigue and foggy head etc.

    Altogether manageable and highly successful at shrinking the tumor (noe-adjuvant dosedense protocol).

    Time to put more lotion on my hands and feet. Nerdy

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 19
    edited March 2018

    Hi, Chelsea, I am taking a small dosage of Avitan during my “on-week”, which seems have helped ease my nerve and bring me peace.

  • chelsea5
    chelsea5 Member Posts: 46
    edited March 2018

    Thank you Walkingintheclouds. I saw my MO this week and he has given me an antidepressant called Effexor (Venlafaxine) to help with some of my mental angst. Though I will say drinking more water every day really does help.

    Update: I stopped taking the antidepressant after ten days when the side effects from the Xeloda were worsening. I just didn’t want to take one more pill. I’m doing well.

  • chelsea5
    chelsea5 Member Posts: 46
    edited March 2018

    Walkingintheclouds- My Oncologist has never mentioned tumor markers.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited March 2018

    Hi all, I just started Xeloda this week for a local recurrence. My breast cancer managed to resist TC chemo and AC chemo, so here I am. I hope this will work better!

    I'm supposed to be two weeks on Xeloda and one week off, three week cycles. I haven't been as vigilant with the lotion as I should be, especially on my feet. So far no problems other than feeling kind of weird and thirsty, but I'm only five days in.

  • beauz
    beauz Member Posts: 113
    edited March 2018

    Hi buttonsmachine, you have been through a lot at a young age. I pray for you and all of us minimum SEs and max efficacy from X!

    It has been quiet here. I take it as a good sign that everyone is managing alright with X.

    I am on my 4th round with reduced dose of 3000mg/day. My blood counts was good this time. During my 3rd round, my appetite was down, had cramps in my abdomen for a few days ( no dihareah, no constipation), and sensitive on my fingers and feet. I am using urea cream diligently. MO decided that I should start radiation after this round of X and then back to X for 4 more rounds when radiation is done. I will have my initial appointment with radiologist this Thursday.

  • chelsea5
    chelsea5 Member Posts: 46
    edited March 2018
    Hi Buttonsmachine,


    I just started my second round of X. MO reduced the dosage from 5000 mg daily to 4000 mg. Some discomfort in hands and feet for which I’m using tons of Euceryn and Urea cream. Drinking lots of water has helped me a lot to feel better. We can do this. 🤗
  • MountainLife
    MountainLife Member Posts: 6
    edited September 2018

    Hi group! I'm going to start xeloda in the near future and my MO told me today the worst side effect will probably be the big d, will I be able to work and will imodium stop it? What about white counts? Will I have to stay away from all germs like AC chemo? I did really well through 4 DD AC and 4 taxol. How does xeloda compare? Thanks in advance for any info 😀

  • chelsea5
    chelsea5 Member Posts: 46
    edited April 2018
    Hi MountainLife,

    My worst side effects have been diarrhea and tiredness. My MO has managed the side effects for me with IV fluids and medication. Imodium didn’t do much for me. He put me on an RX. He also has lowered my dosage from 5000mg round 1 to 4000 mg round 2 to 3000 mg round 3 which started today. I’m hopeful the lower dosage will be more tolerable. I also have issues with hand/foot syndrome and use Euceryn pretty much all the time. MO says lotion is the best way to prevent. I wish you and the others here great success with this. I am expecting to complete 6 more rounds.
  • kmajor
    kmajor Member Posts: 68
    edited April 2018

    Hi MountainLife ~ I started Xeloda on Feb 26th and I'm on my 3rd round. I take 4,000 mg. I have not had any of the big D and no nausea. I do eat before I take them to keep the nausea away. All of my counts are staying good so far. With my oncologist his main concern is how my hands and feet are holding up. I just started having some cracking on my fingertips so definately get a good lotion. I did have a little fatigue my first 2 rounds but this round seems to be much better. Hope this helps

  • MountainLife
    MountainLife Member Posts: 6
    edited April 2018

    Thanks for the info, I appreciate it!

  • beauz
    beauz Member Posts: 113
    edited April 2018

    Hi Chelsea and kmajor , glad to hear you are managing Xeloda.

    MountainLife, I only had once or twice loose bowels during each round. I returned to my work ( off since May 2017) at a reduced capacity while I am on Xeloda.

    I finished by 4th round tablets about three weeks ago. I will start radiation next Tuesday. My appetite and energy level are back to near normal. I truly enjoy chemo-free days. I have peeling of hands and feet. My finger prints are still faded. I have many brown and purple spots on my fingers and soles of feet. During Xeloda, I kept biting my mouth and tongue while eating or half sleeping 😱. The wound would become mouth sores and took at least 4 weeks to heal. At the end of my last X tablets, I had three mouth sores. 9 days after my last X tablets, three mouth sores disappeared overnight. Yay!

  • IntegraGirl
    IntegraGirl Member Posts: 48
    edited April 2018

    I finished 8 rounds last week. At the end of round 7 and 8, my feet got very sore with lots of peeling. However, I use a lotion with a high urea content, wear thick socks and it’s bearable. I still walk my dogs 45-60 minutes a day most days although I don’t move as fast as usual. After round 7, my feet were much better 10 days out. My hands are doing much better than they were even a month ago so Xeloda may not have been the culprit. I’m tired but back to pretty much full capacity at work the last few months

  • chelsea5
    chelsea5 Member Posts: 46
    edited April 2018

    IntegraGirl,

    So happy for you! It is encouraging to hear from someone doing well farther down this road.

    I have been super tired...resting 18 hours a day. I wonder if anyone else feels this wiped out?

  • rdeesides
    rdeesides Member Posts: 233
    edited April 2018

    IntegraGirl, what was your dosage? Just curious.

    I am starting Xeloda in May. A little nervous about the hand/foot thing, not gonna lie. All the other SEs I think will be manageable, at least they were when I was on AC and Taxol so I'm hoping Xeloda won't be any worse.

    Rebekah

  • MountainLife
    MountainLife Member Posts: 6
    edited September 2018

    Hey there! I just finished radiation last week and met with med onc Friday. I'm waiting for my docs to schedule a total hysterectomy then I'll be doing the xeloda. Do people take xeloda and femara at the same time? I didn't ask the Dr as I was on info overload that day, lol.

  • chelsea5
    chelsea5 Member Posts: 46
    edited April 2018
    MountainLife
    Yes I take Letrozole and Capacitabine.

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