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All about Xeloda

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  • doodler
    doodler Member Posts: 81

    I'm now digging the frozen green, leafy veggies out of the freezer and cooking them, nightly, until I presumably begin taking Xeloda next week. Still waiting for DPYD screening test results, but Xeloda is next up for the treatment plan.

    Green, leafy veggies, I adore them! I want to heed the wise advice shared in the thread though, and reduce the folic acid. I'm so grateful to have all the experiences and tips that have accumulated in this thread.

    On the plus side, since I've stopped other meds… I suppose it's safe to drink pomegranate juice again…

  • denny123
    denny123 Member Posts: 1,525

    @doodler Check the folic acid in what you are cooking now. I can eat green beans, iceberg, red and arugula lettuce. I have found that I can still eat a few broccoli florets for dinner, since I mix them up with other veggies. I do buy the bags of frozen assorted veggies, that usually have broccoli, etc in them.

    You don't have to go cold turkey, and hopefully you will be one of the few ladies who can eat what they want. Google to find the top 15 foods that you should eat in moderation or try to avoid.

  • doodler
    doodler Member Posts: 81

    @denny123 Thank you! More helpful advice!

  • AJ
    AJ Member Posts: 256

    I developed a bunch of itchy bumps on my legs from Xeloda. Oncologist said she hasn’t seen this side effect before. She sent me to a dermatologist who said it was vasculitis and took some biopsies and had me pee in a cup to see if it might be in my kidneys. And prescribed a steroid cream. Annoying! I want to stay on Xeloda because it’s working on my cancer! So far the dermatologist told me to keep taking the xeloda.

  • cookie54
    cookie54 Member Posts: 810

    @AJ Ugh sorry to hear this! Weird right? I hope that your urine sample and biopsies turn out to be insignificant. Crossing my fingers that you keep riding the Xeloda wave. Keep us posted.🤞

  • denny123
    denny123 Member Posts: 1,525

    @AJ I wonder if the Faslodex or Zometa is causing the problem? I have been on Xeloda for almost 7 years and never heard of a rash from it. But I do seem to have weird SE's that no one can explain.

    So I guess that it is possible.

  • AJ
    AJ Member Posts: 256

    I haven’t had Faslodex in a few weeks and my last Zometa infusion was over two months ago. I’m using a variety of creams to manage the itching, which is driving me nuts. Urine test was normal, still waiting on biopsy results.

  • denny123
    denny123 Member Posts: 1,525

    @AJ Are you on a high dose of Xeloda? I am on 2,500 at 7/7.

  • vlnrph
    vlnrph Member Posts: 506

    AJ, has anyone suggested taking oral antihistamines? As a retired pharmacist, I can tell you that, besides the usual OTC Benadryl/diphenhydramine and the non-drowsy types like Claritin, the H2 blocker famotidine (Pepcid, now also the active ingredient in Zantac) may also be helpful.

    Other options might be a capecitabine dose reduction or holiday to see if things clear up. In addition, an oral steroid prescription such as prednisone might be something to consider.

  • AJ
    AJ Member Posts: 256

    @denny123 I’m on 3000 a day 7 days on, 7 days off.

  • AJ
    AJ Member Posts: 256

    @vlnrph I’m taking Zyrtec in the day and Benadryl at night. Maybe prednisone is in my future but I’ll wait to see what the doctors say. The cetaphil anti itch cream and lidocaine cream and steroid cream are helping a lot

  • denny123
    denny123 Member Posts: 1,525

    @vlnrph I had 2 years of severe foot infections, until I remembered about avoiding foods that are high in folic acid. Since then (for almost 5 years), my feet are only dry.

    I am careful about what I eat now and only eat those foods in moderation. I don't believe in ingesting meds when a diet change is what will solve the problem.

    @AJ 3,000 is high. You might benefit from a dose reduction. Meanwhile, watch what you eat as I stated above.

  • vlnrph
    vlnrph Member Posts: 506

    AJ, I started at your dose (3 x 500mg tablets am+pm) but got terrible mouth sores so it was reduced. I decided to stay with the original 14 days on and 7 off regimen. My oncologist agreed with my assumption that the every other week pattern was adopted for side effect management.

    Ditching my full strength adult vitamin due to the folic acid content, I’m taking a single toddler gummy. It’s like a tiny little dessert! Unless food is organically sourced, farm soils are depleted and we can’t be sure we’re getting the full nutritional value once present so I supplement.

    I took a month long capecitabine holiday last spring to allow for hip replacement healing. That break may have let resistance develop. My CA 15-3 was creeping up but my MRI with Eovist for contrast only saw a single tumor doubling in size, from a half to one centimeter.

  • AJ
    AJ Member Posts: 256

    I may try the diet thing. I don’t want a dose reduction or break because it working on my cancer

  • denny123
    denny123 Member Posts: 1,525

    @AJ Moderation is the key. I can still eat a normal-sized spinach salad or a normal portion of broccoli. I was eating way too much so my folic acid level must have been off the charts. Now that I have cut back, my folic acid is in the normal range. So I am getting plenty.

    @vlnrph My onc told me to stop taking my Centrum multi-vitamins and my bloodwork still looks very good. My feet were so badly infected that he wanted me to stop taking Xeloda completely. But I had already figured out the problem and insisted on going back on it after 7 weeks (it took that long for my feet to heal).

    My CT scan did show a spot on my liver, so I asked to go up to 2,500 (I had been on 2,000 at 7/7). And the liver spot was gone with my next CT scan.

    So I didn't have a set-back anyway.

  • AJ
    AJ Member Posts: 256

    I looked at the folic acid content in my multivitamin and holy cow, it’s a lot! I’m going to stop taking it for a start!

  • denny123
    denny123 Member Posts: 1,525

    @AJ Agree! I stopped taking my Centrum multi 5 years ago and all of my vitamin levels are fine. My onc told me that I really don't need to take a vitamin.

  • doodler
    doodler Member Posts: 81

    Now that it has been a few days of taking Xeloda, I haven't had severe side effects — so far, so good.

    Some nausea that started yesterday, but the prescription anti-nausea meds have that under control. They cause a bit of drowsiness.

    I have started "night sweats" though (but really they can start anytime I take a nap). I hadn't had that yet on my cancer journey. I've ordered a couple of cheap washable night pads online, hopefully they'll work well at absorbing sweat too and that will cut down on the amount of bedding that I'll have to keep washing.

  • denny123
    denny123 Member Posts: 1,525

    @doodler Do you take the pills a half hour after a meal? They can not be taken on an empty stomach.

  • doodler
    doodler Member Posts: 81

    @denny123 Yes, I've taken the Xeloda after meals since starting it.