All about Xeloda
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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…
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@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.
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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.
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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.
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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.
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@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.
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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.
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I may try the diet thing. I don’t want a dose reduction or break because it working on my cancer
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@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.
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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!
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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.
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@denny123 Yes, I've taken the Xeloda after meals since starting it.
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Does anyone know where the information about Xeloda and Folic Acid comes from? The specialty pharmacist didn’t know anything about it. Everything I’ve read on the internet implies that green leafy vegetables and fruits might cause digestive problems and diarrhea. I have no real digestive problems on it. But I have HFS and the itchy bumps. I haven’t found anything linking folic acid or folate to skin reactions. BTW, the biopsy results said it’s not vasculitis but just “drug eruption.” It seems to be improving.
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@AJ The literature that came with my first pill shipment warns to stop any folic acid supplements immediately. The hospital company pharmacist who sends my pills knows about the folic acid problem.
Not all women are affected by it, but it seems to be a very high percentage.
It is easy to prove….just cut back on the foods that are high in folic acid for a week and you will see a major difference. You can eat those foods in moderation. I ate a normal portion of broccoli for dinner a few days ago, and have had no problems. But if I eat broccoli every day for a week (like I used to), I had horrible bleeding toenail infections.
My bloodwork shows that my folic acid levels are normal, so I am still getting enough.
I have cut back on folic acid foods for 5 years now and haven't had an infection at all, like I suffered miserably for the first 2 years. My hands and feet are just dry now, but not infected or burning.
Also, my multi vitamins have a high percentage of folic, so I no longer take them.
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@AJ I lost my list of what I can eat, but to make it easier for you..this is what I eat. Vegetables- cauliflower, carrots, green and yellow beans, any kind of squash, corn, iceberg, red or arugula lettuce. Fruits-watermelon, peaches, plums, apples, pears.
When in doubt, I just google to find the amount of folic acid in a food.
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@aj
A 4 mile hike would kill me. I don't even use my treadmill anymore.
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AJ Ugh sorry to hear about the blisters! Even on my worse days with HFS in the past I would always insist on long walks. Walks are my mental sanity and my release. I tried so many sneakers over the years and I thinks it came down to making sure my foot didn't slide or rub in my sneaker. So I get you wanting to enjoy a beautiful weather day and a long walk. I hope your feet recover quickly and you find a happy medium.
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My time on Xeloda has come to an end. :(
Scans a couple months ago showed progression to the spine, so I had radiation to two areas in the hopes that the mets could be contained and I could continue with Xeloda. However, after the radiation, I started having vision problems. A hospitalization and many, many tests later show a paralyzed eye nerve caused by cancer cells in the spinal fluid. It looks like I will be moving on to Trodelvy. I have an appt with the oncologis on Monday. I’m not happy with this latest development, but not much I can do about it.
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Hugs, Divine. Very sorry to read this. Just so glad that there does seem to be something that you can take/do.
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@divinemrsm I am sorry that you are having those problems and I hope that Trodelvy works very well for you!
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