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All about Xeloda

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  • divinemrsm
    divinemrsm Member Posts: 6,028
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    denny, it is wonderful to hear of your good scans!! Very happy for you! ♥️

  • denny123
    denny123 Member Posts: 1,453
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    Thanks kbl. Me too.

  • cookie54
    cookie54 Member Posts: 679
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    @denny123 Congrats Denny that's fabulous news, keep the streak going!

  • jsniffs
    jsniffs Member Posts: 136
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    Does anyone have any experience with cardiotoxicity and Xeloda? I began Xeloda on Monday, and I was admitted to the hospital yesterday (Thurs) because of chest/shoulder/neck tightness. My troponin spiked, which is an indicator of heart stress. Ekg and ultrasound of heart appear normal. They are trying to figure out if there has been actual damage or just vasospasms that put stress on the heart. If you had this experience, what did you do? I was hoping to stay on Xeloda a lot longer than a few days. Thanks for any insight!

  • nkb
    nkb Member Posts: 1,561
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    Jsniffs- not caused by Xeloda- but, had severe anemia that caused my cardiac enzymes (Troponin) to spike multiple times over a 3 day hospitalization- all cardiac tests were normal. anemia due to ? bone marrow invasion of cancer after a virus or from Tamoxifen which I had only taken for < 4 weeks.

    I hope you don't have to give up on Xeloda

  • jsniffs
    jsniffs Member Posts: 136
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    Thanks @nkb. It's interesting to hear of other causes of troponin spikes. My MO is out this week, but I consulted with other MOs, and it is looking like Xeloda is not going to work out for me. I'm pretty disappointed, as I really thought this would work out longer. I didn't even get to see if it would work for me. Oh well, onward and upward!

  • divinemrsm
    divinemrsm Member Posts: 6,028
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    jsniffs, so sorry to hear about the cardiac issues with Xeloda. I hope your following treatment is a better fit and works well for you.

  • denny123
    denny123 Member Posts: 1,453
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    jsniffs…I have been on Xeloda (Capecitabine) for over 5 years with no problems like that. What dosage are you on? I am at 2,500 a day.

  • denny123
    denny123 Member Posts: 1,453
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    @cookie54…Thanks!

  • denny123
    denny123 Member Posts: 1,453
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    Thanks kbl and divine!!

  • jsniffs
    jsniffs Member Posts: 136
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    @denny123 - I started at 2000 a day. The final conclusion they came to was that I had a coronary vasospasm due to Xeloda. I'm 43, non-smoker, non-drinker, 100 lbs, and feel healthy (despite everything else). Apparently this is a rare but serious side effect. I've been reading up on case reports, and it looks like heart issues, if they are going to occur, often happen after the initial few days on Xeloda. I'm grateful and so thankful for getting good care and being able to walk away from the experience.

  • denny123
    denny123 Member Posts: 1,453
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    Jsniffs…wow-that sounds scary! I have never heard or read about that so far. I am so glad that you are okay now.

  • sondraf
    sondraf Member Posts: 1,586
    edited May 2023
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    Waiting for my onc discussion, but reading my notes in the blood test screen, looks like she has ordered Madam X for my third line. I figured this was the top possibility so will get confirmation and start getting thr Amazon shopping list together!

    Edit - spoke too soon, Ive got three more weeks on Lynparza. Suits me, gonna push the boat out on this holiday weekend with the drug I know whats going on!

    @jsniffs I was reading through this thread between blood and doctor and saw your situation. It was brought up to me as a rare but serious side effect and usually happens about day 5. How frightening - I was told to call ambulance if this happens.

  • weninwi
    weninwi Member Posts: 748
    edited June 2023
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    An oral abstract from ASCO 2023 (American Society of Clinical Oncology) reported on a study that looked at capecitabine (Xeloda) comparing 14 days on/7 days off at 1250mg twice daily with 7 days on/7 days off at 1500mg twice daily. I know I had questions about dosage and schedule when I started on the treatment.

    Randomized trial of fixed dose capecitabine compared to standard dose capecitabine in metastatic breast cancer: The X-7/7 trial. https://meetings.asco.org/abstracts-presentations/219697

    Background: "In metastatic breast cancer (MBC), oral capecitabine prescribed at the FDA approved dose of 1250 mg/m2 twice daily, 14 days on followed by 7 days off, is associated with poor tolerance and high discontinuation rates. Mathematical models suggest a fixed dose, dose dense (7 days on, 7 days off) schedule may be optimal for capecitabine efficacy. We conducted a randomized trial to compare the efficacy and tolerability of fixed-dose capecitabine, 1500 mg twice daily, 7 days on, 7 days off (FD) to the FDA approved dose and schedule (SD)."

    Conclusions:Fixed dose capecitabine (1500 mg twice daily) on a 7/7 schedule has less toxicity and similar survival when compared to standard BSA-based dosing on a 14/7 schedule in MBC. Clinical trial information: NCT02595320.

  • nkb
    nkb Member Posts: 1,561
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    Thanks Weniwi- this study if adopted will help a lot of people take this drug more successfully-

  • husband11
    husband11 Member Posts: 1,287
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    Great to see more confirmation that 7/7 is effective. Did they say if they could confirm it produced less adverse effects?

  • weninwi
    weninwi Member Posts: 748
    edited June 2023
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    husband 11,

    If you search for the link https://meetings.asco.org/abstracts-presentations/219697 you can read the entire report. It's not long.

    This is from the Results paragraph:

    "Toxicity related treatment discontinuation occurred in 21 patients (28.8%) in the SD (standard dose) arm compared to 6 patients (7.5%) in the FD (fixed dose) arm (p<0.0006). Grade 2-4 toxicities (Table) occurred more frequently in patients receiving SD capecitabine (49.3%) as compared to FD capecitabine (25.0%) (p=0.0018)."

  • husband11
    husband11 Member Posts: 1,287
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    Thank you weninwi. That is great news and should provide impetus for change.

  • husband11
    husband11 Member Posts: 1,287
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    Latest scan results show my wife's liver is stable, but she is showing what appear to be schlerotic lessions on some vertebrae. This has only showed up recently, since her switch to xeloda. It's either new cancer, or a healing reaction to cancer being killed off by the xeloda. We are in a watch and wait scenario to know. Ca-15 has dropped significantly since starting xeloda (finished 3 cycles of 3 weeks), but CEA rose slightly. Not sure what that mixed result means.

  • cookie54
    cookie54 Member Posts: 679
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    husband, That's good news glad to hear it sounds like her cancer is reacting to Xeloda, fingers crossed!

  • sondraf
    sondraf Member Posts: 1,586
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    Coming almost to the end of week 1 on this drug and so far ok. Some appetite loss, bit of increased (trapped upper abdo) gas, a bit of hand tingling this morning (quick slapped on some lotion and a glove) but otherwise ok and not much different from Lynparza. I can only imagine what week 2 is going to bring before I see oncologist. However, Im currently not that mobile due to hip (which may be feeling better? who knows, Ive also been resting and icing it) although I get out for a walk every day with squishy shoes.

    I must be a lot taller and heavier than the rest of you gals as Im on 2300 x2. Onc fully expects to move to 7/7, not least because I was complaining about having to go in every 3 weeks from every 4!

  • weninwi
    weninwi Member Posts: 748
    edited June 2023
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    sondraf,

    Thanks for sharing your update and good luck with Xeloda. My hand/foot symptoms came on slowly until suddenly one day they were full blown. My worst foot symptoms were extreme redness, fire hot, and numbness. And I've had a few small blisters and peeling. Fingers were numbness. All my h/f symptoms are much less now and tolerable. Switching to 7on/7off provided the most relief. Also, as suggested by denny123, I think limiting folic acid helps - Ex: iceberg lettuce instead of dark greens, no folate additives or supplements, and for me limiting avocado & peanut better. Plus cushioned shoes and twice daily lotion help. Every oncologist is probably a bit different, but my MO said she "rounds down" from the calculated full dose based on the height/weight formula.

  • sondraf
    sondraf Member Posts: 1,586
    edited June 2023
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    Thanks wenn! About how long until they were full blown? We are trying to book some time to go see hubs parents in mid August and they dont know about my illness. Im sure Ill have a chance to adjust before then, its about 5.5 weeks away. Onc did say HFS tends to appear mostly in 2 and 3rd rounds so… guess I better take out that travel insurance and make sure everything is refundable. So tired of being trapped in the house, its been all year and who knows how many summers are left for me.

    Not a fan of this eating before taking drugs thing either, but what can you do.

  • husband11
    husband11 Member Posts: 1,287
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    I think the voltaren is helping my wife's hand foot syndrome. Can't say for certain. Feet look a lot less red, and aren't hot to the touch anymore. Applying it twice a day.

  • weninwi
    weninwi Member Posts: 748
    edited June 2023
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    sondraf,

    I started on 14on/7off which is a 3 week cycle. By the end of cycle 3 my feet had become a real problem. My MO had me hold the drug for one week to allow for healing, and then I switched to the 7on/7off schedule for the start of cycle 4. The 7on/7off schedule is a 4 week cycle. After the switch my feet did not get any worse and instead started to settle down. Other things I did to provide relief: short periods off my feet through out the day to relieve weight/pressure; cold packs or cold water foot bath at intervals; switched between cushioned shoes, slippers, and no shoes through out day; tried different lotions (mentioned in previous posts). I bought some Voltaren, as mentioned by Husband11, but have not used it. Seems to me that a trip in Aug should be very doable in terms of your feet if you take steps now to control the h/f symptoms. I have the same thought as you "who knows how many more summers". Hope you enjoy your trip!

  • weninwi
    weninwi Member Posts: 748
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    I've been on Xeloda for 6 months now. Median progression free time is 6-9 months. I've started to have right upper quadrant pain and assume it's my liver. I've never had liver pain before. I had labs done today and my bilirubin jumped from .7 in April to 1.3 today (upper normal). Up until now my bilirubin has always been below 1.0. I see my MO tomorrow. My next scans are not until early Aug. My MO does not use tumor markers to track progression and she has never talked with me about radiation treatment for specific tumors in the liver or bone. I was hoping to stay stable to 9 months or longer, but it doesn't look like that is happening.

  • cookie54
    cookie54 Member Posts: 679
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    @weninwi If it's any consolation for you my bilirubin has been at the 1.2-1.4 range for months and it started at .8. It is pretty common to have elevation so don't give up on X yet. Obviously your MO will make sure your liver counts are acceptable to continue also. I just wanted to give you some hope! I know it's hard not to think every elevation means progression. Remain positive that you will continue stable on X. Keep us posted,hugs❤️

  • divinemrsm
    divinemrsm Member Posts: 6,028
    edited June 2023
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    weninwi, I will be interested in hearing what your mo says because I’m experiencing the same thing as you, altho I’ve been on xeloda for over three years. But recently I’ve been having some discomfort on the upper right quadrant side, too, which I’ve never had before, and my bloodwork is a bit off, with bilirubin level rising and ca 15-3 went from 22 to 28 the highest its been in several years. I have scans in July so am bracing myself for what may be.

  • weninwi
    weninwi Member Posts: 748
    edited June 2023
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    divinemrsm and cookie54,

    Saw my MO today. She said rising bilirubin is related to the liver, but also the blood. She ordered another complete metabolic panel (CMP) with all the liver function tests in 2 weeks, rather than wait the usual 4 weeks. For my new complaint of upper right quadrant pain, she ordered my next CT scans sooner, in 2-3 weeks, rather than wait until early/mid Aug. If the scans show progression, she talked about what her next treatment ideas would be - maybe elacestrant (but she's not overly convinced it would be useful for me) or Enhertu (she emphasized this option) or Trodelvy (only after 2 chemos & I've had 1 so far) . She said she would consider radiation treatment if the scan showed a single liver tumor growing. I asked about getting a Travera test on a fresh liver biopsy and she said "No" as the test is not recognized by the cancer center.

    Thank you both for sharing and supporting.

  • divinemrsm
    divinemrsm Member Posts: 6,028
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    wen, it sounds like your onc is on the ball. Good that you’re getting additional bloodwork and that the scans are being moved up. I appreciate the information you’ve shared about your appointment. I am hoping for all good things for you. Keep us posted.