All about Xeloda
Comments
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Hi Eleanora I am a newby to X & only on my 3rd month although I am over 10 years MBC. I am also a vegetarian and still eating folate but avoiding folic acid which is added to all enriched white flour commercial breads, cereals, grains, pasta, biscuits, cakes and many other foods. I have carried out a lot of research on foods and as folic acid is not always printed on wrappers etc so I have asked in store for clarification. I do think we are all different and that some people will tolerate things that others don’t and age, weight and dose probable also need to be considered. Hot weather and the wrong shoes also has an affect on our feet. So far my s/e’s are limited to a bit of tingling of my feet. Good luck to you.
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@threetree So I have had dose reductions with X over the years. I started at 3,000 per day, then 2,500 and now 2,000. I saw a definite improvement with HFS with reducing it. I was scared to death to start reducing but as my scans kept holding steady I agreed to start reducing to have a better quality of life. My mets were to my lungs and now have been NEAD. You can always discuss again with MO if you want to give it a try.
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So glad to find another vegetarian! It's been easy to identify fruits that are okay to eat, but struggling with vegetables. Are there varieties of lettuce that you find acceptable? Have requested a dietitian consult but haven't received a call yet. Will continue to search.
Glad that the se's are mild for you so far. May they continue that way! What dose are you on? Is your schedule 14/7 or 7/7? I am starting at 2500mg/day, 14/7. Have you modified your daily activities? I was given an information sheet from my MO that said not to use garden tools, screwdrivers or anything that would put pressure on my hands. Unrealistic for those of us without household staff. 😂
The fact that you have succeeded in fighting MBC for 10 years is very encouraging. I have managed 4+ years so far and would welcome another 6.
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I am on 7/7 schedule 2600mg per day. I walk everyday across our land and have lots of pets. I now do use Aveeno on my feet several times a day and of course that means my hands are regularly moisturised too. It’s been hot here so I am in sandals and soft shoes and although my feet are tingling and a bit red after long walk nothing too bad thus far. I have found that I have for the first time on this MBC journey had a bit of fatigue which as someone who only gets 4 hours sleep a night is a new thing.
My husband, AI and I have researched foods so I avoid most breads, cakes, biscuits & supplements that have added folic acid - fortunately I have found lots of these goodies that I can eat but have been surprised that there are some things such as Magnum ice creams that are off my menu. Brown rice & pasta is fine but not white. I still eat all green food as I was told that it’s only folic acid that I need to avoid not folate. When I’m in a restaurant or staying in a hotel I inform them that I am on chemo and must avoid folic acid and that works well.
I want X to work as I won’t do iv chemo so not too much left for me but I also want to continue to enjoy my life otherwise it’s not worth hanging on so if I have the occasional bit of folic acid by mistake then so be it but I am taking this very seriously and so far so good.I wish you well and hope you find what works for you.
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@denny123 I have to say the only time I had pain in my bones, was at the very beginning when I was looking to find out what was wrong with me and then the diagnosis of stage IV BC. Since then, with all of the meds I’ve been on I have had no pain at all. I feel pretty lucky about that. Having the mets spread to various abdominal organs has me somewhat freaked out, but I’m trying to remain calm. Thanks for your response and I wish the best for you.
@elanora I love that you ride your stationary bike everyday! That is awsome. I need to get on my treadmill more! I live in the south as well and it is absolutely way too hot. And it’s been raining like crazy for the past week or two. Luckily, knock on wood, I do not get the hand/foot syndrome bad. Just a little bit and manageable. Good for you on travel plans ~ Enjoy your trip!0 -
hi everyone…. regarding the Folate/folic acid avoidance, what is the side effect it produces that everyone is trying to avoid? Is it the nausea and vomiting side effect? Thanks…
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@marcials1 Folic Acid causes the burning and infections in your feet and hands. When I was OD'ing on folic rich foods, I didn't have nausea or vomiting. But my feet were terrible. There's a scientific reason for it, if you google.
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Partial cross-post from Mel's Living Room.
This morning I applied Voltaren and moisturizer to my hands and feet, then took my first dose of Xeloda. So far, so good. The change of treatment after 4 years on Kisqali has motivated me to be more involved in the experience. I have joined 2 different virtual support groups for people with MBC for a total of 8 meetings a month. The members are a great source of helpful, practical tips. I kept requesting a dietitian/nutrition consultation until the cancer center finally gave me one. Based on the helpful comments from those here already taking Xeloda (thank you @denny123 @chico@soldanella @cookie54 and @threetree ) I'm hoping to get advice on a diet to help with the folate issue with Xeloda as well as recommendations for getting enough nutrition as the medications have reduced my appetite. I also pressed for an orthopedic evaluation, as the progression was all bone mets. Will be happy to share anything I learn from these consults. Thank you especially @cookie54 for the positive comments about water shoes. The thought of being deprived of the beach, even if only for a short visit, was making me cry.😔
One last question - the memo from my MO's office said to take cool showers to avoid HFS. The mere thought makes me shiver. Does anyone take at least warm showers?
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Hi @elanora ~ I have to step into a hot shower or I won’t get in! But within 30 seconds to a minute, I turn it down to warm. My hands/feet have been dry a little achy and very discolored, but not terrible at all.
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@eleanora I have been on Xeloda for 8.5 years and hve never taken a cold shower. They are always comfortably hot. In my opinion, I would hold off on the Voltaren since it can be harmful to the liver. And it is supposedly to help with the burning feet. But since my diet consists of low-folic foods, I don't have burning.
I will try to post the foods that I eat. And although I am eating less folate, my folate blood levels are always normal.
Sorry for the big font, but this is how it shows up from my documents.
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Bless you for the info on the hot shower ! That is always my temp of choice particularly as I have arthritis and it helps the joint and muscle pain. Since this is only my first day on Xeloda I might stay at "comfortably warm" until I see how my hands and feet are impacted . I am also copying your food list as I'm a vegetarian and it will be very useful.
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have been watching the news about the fires in the PNW and hoping that they are nowhere near you. Please check in and let us know if you're okay.
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@Elenora The caution against the hot water is because your feet will get infected IF you don't watch your folic acid! My rant about Voltaren…..several years ago I tore my meniscus and my PCP prescribed Voltaren for the pain BUT she cautioned me to not use it any longer than 2 weeks since it can harm the liver. And the caution is also written on the literature that comes with the Voltaren. So it really upsets me that everyone is being told to use it, when all you need to do is cut back on the high folic foods. You don't have to cut them out completely, but not go overboard like I did the first 2 years of Xeloda….with large spinach salads everyday for lunch, and a lot of broccoli, etc. I can still eat a small spinach salad with no problem, though. It has to do with the quantity. So please don't use the Voltaren unless you REALLY need it for pain. I haven't had foot pain for the last 6.5 years since I am watching my diet.
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@eleanora No way in he** would I have survived on X taking a cool/ cold shower lol. I take my usual hot shower but when I do have a flare up I will turn the water to cold and rinse my feet at the end. Glad you are receiving all your requests as you deserve it. I have used many creams all which have been listed here previously and I think you will have to see what works best for you! Who knows you may not even have any signs of HFS.. fingers crossed. You’re very welcome, our summers are spent boating and I would hate to give that up to X. One step at a time, you’re armed with lots of valuable info and we’re all hoping you too can ride the Xeloda wave for a long time!🤞🏻🌊🤗
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@denny123 @cookie54 @marcials1 and @aj (who I inadvertently omitted in my earlier post because I wasn't wearing my glasses).
your advice and support are priceless.❤️
Denny, I think that the Voltaren push has come from an ASCO presentation in 2023 or 2024 of a study favoriting it. Don't recall folate limits being part of the study.
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@eleanora Meanwhile, women are going to have additional health problems from the overuse of Voltaren. Goodness knows what would happen to me if I used Voltaren for my 8.5 years of Xeloda. For my first 2 years, I bought several of the ice socks and gloves to ease the pain caused by my overuse of spinach.
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https://ascopubs.org/doi/10.1200/JCO.23.01730
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