All about Xeloda
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I’m on my fifth 14/7 cycle of 4000 per day, dose presumably high because I have put on so very much weight since MBC diagnosed 2022, which I took as an excuse to stop running and to eat a lot of pizza. I agree with Sondra that O’Keefe’s foot cream is excellent. I’ve also started using Nursem hand cream, recommended by a chef (lots of handwashing) and it is the holy grail of hand creams. Shocked that Katyblu wasn’t tested before starting Xeloda. I sleep a LOT these days but feel less poisoned by Xeloda than previous hormonal regime, and still able to work between naps. Conflicting opinion on effectiveness between the two oncologists I have seen at clinic since starting this. Another scan on Monday…
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@denny123 I am on the 7/7 regime. Keeping away from folic acid? I used to eat healthy and now I want potato chips. I drank 2 diet cokes this week. I think the last time I had a soda was probably 7 years ago! I have steak in fridge which is my fav and the thought of eating it…meh. I am nauseas at times so lots of saltines, then other time I am starving. One morning I woke at 4am starving. I don't ever get up at 4.
My hands and feet feel like tingly, like when your leg falls asleep. But then there are little shocks of pain. They also feel like they are burning a little. I told PA about it and she just made a note of it and said keep an eye on it. It could be just one of those special little side effects that only I get and that is not on the package insert. There is always one. 😎
@katyblu Sorry to hear all that has been happening.
@kbl My husband told the PA that I am very aloof. She looked perplexed at this. I said could it be the fatigue? She said its possible. My husband talks but not as much as me. But when he is talking to me I am just like oh man too many words I cant keep up in the conversation.
@AJ Ugh sorry to hear you were in bed for two days. But you give me hope that it is going to get better. You are starting week 3. Does that mean 3rd week of being on meds or just week 3. I am still confused as to how to word which week I am "on" and which week i am "off"
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@luvdbyhim You are just starting out, so just be aware of the green veggies. The literature with the pills say to stop any folic acid supplements, so that is the clue for folic acid. I used to eat huge spinach and avocado salads for lunch, and a lot of broccoli. That is what killed my feet. But a normal amount doesn't bother me.
It doesn't bother me mentally since I have been on chemo for 22 years and I just feel blessed to still be here.
I have found to eat whatever you feel like eating. When I was on Kadcyla for over 2 years, I always had mild nausea and lived on white potatoes and buttered noodles.
I feel that food doesn't really impact cancer since it is the chemo that makes the difference. I have gone on very strict diets while I had active tumors, but it didn't help. Chemo is what helped.
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@luvdbyhim I totally understand. I remember it well, being overwhelmed when there was too much going on that I could usually handle when I wasn’t on Xeloda. I hope it gets better for you like it did me.
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I'm still on my first week of Xeloda but they have started me off on a smaller dose because of my recent hospitalization for dehydration and nausea/vomiting. I have trouble sometimes with eating and keeping fluids and food down. Pizza sounds amazing right now though! I was initially set to start on 1500mg BID on a 14/7 but I am taking 1000mg this week to make sure they stay down and my vomiting is settled down. I will see the PA for my MO on Monday to reevaluate.
@denny123 I can't believe nothing was said to me about folic acid! I hadn't heard about that until I read it here and then researched it. I'm kind of sad because everything listed on high folic acid foods is something I like and usually eat when I can tolerate eating regular foods. As of late I seem to live on yogurt consistency foods so lots of yogurt, pudding and soup.
So far I don't have any symptoms. I have days with severe fatigue but also just finished WBR so I don't know how much that is complicating it. I'm learning from all of your experiences though. @vlnrph I also took your suggestion on just a small amount of diclofenac gel and mix it with Cetaphil right now since I have it on hand.
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@luvdbyhim I’m on cycles of 7 days on, 7 days off. So I’m starting my third cycle of taking the pills
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@emac877 3,000 a day at 14/7 is still a high dose! I did well on only 2,000 at 7/7. I increased it myself to 2,500 a day after my onc took me off Xeloda because of my severe foot infection and my CT showed a spot on my liver (now gone).
Do you take the pills a half hour after a meal? That helps the nausea.
My onc is the greatest, but he never heard of the folic acid problem either. But after he saw my dramatic improvement he told all of the nurses to tell their patients about it.
You can try eating normal amounts of foods with folic acid to see how you do. I was guilty of eating huge spinach salads since I was trying to be extra-healthy.
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@denny123 How long have you been on 2,000 at 7/7? My MO just decreased me recently to the same and I'm feeling a bit uneasy on a lower dose. MO feels the past couple scans have been stable and a couple weeks ago had a flare up on HFS. I am due for CT in June so I think after a couple stable scans I will feel better.
emac My MO is also great but doesn't seems convinced on the folic acid. I love greens and ate spring mix salads nearly every day, broccoli etc. Once I cut my folic acids I definitely saw a difference. I still eat salads but with Iceberg ..meh . Agree with denny you will have to test it out and see how you do. My HFS didn't develop until after about 3 rounds and it was gradual. Hoping Xeloda is a game changer for you!
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I started Xeloda in March 2020. After nine months taking 3000 mg on a 7/7 schedule, I was cut back to 2000 mg because of severe h&f side effects. Hope you do well on that dose, too, cookie.
I understand that folic acid can be a concern, but I don’t really monitor my intake of it. As others have said, it’s something to test to see how you do with it. I eat a wide variety of foods with a general philosophy of moderation in all things. I have other issues, high blood pressure and high cholesterol (I take medicine for both) and a number of foods good for those conditions are also high in folic acid. I have to try to balance it all out; not easy keeping all these beasts at bay!
Aside from the h&f issue, Xeloda’s been pretty tolerable for me.0 -
@cookie54 I am at 22+ years of MBC, so I am a hard case. But I was on 2,000 for 2 years and stayed NED. My onc never gives more than 3,000 since a higher dose is seldom needed.
I also eat iceberg lettuce and just read that arugula is also low in folic. So I planted both in my garden. Arugula has a peppery taste, which I love.
There are a lot of veggies that are okay to eat, so I just concentrate on those. Sure is better than infected toenails.
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@denny123 I know..22 yrs is amazing, happy for you! Ok hope to remain stable with the decreased dose,fingers crossed. Nice, hope you have an abundant garden this summer.
@divinemrsm Thanks for the info, glad to hear you X has been good to you too! I have also been on various doses as this is my lowest dose now. I hope to ride the Xeloda wave for a long time.
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I'm still testing things out since this is my first week. I meet with the PA for my oncologist on Monday to see if he is going to up the dose or not. Right now with my stomach issues I am tolerating yogurt consistency foods. salads or anything solid often times come back up or get stuck when I try to swallow. So my diet is pretty boring. I met with a dietician today and she encouraged me to look at calories and protean since those are my biggest problems right now.
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emac, it sounds like you’ve really been going through a lot lately, and I wanted to say I’m sorry for all you’re going through and just send you warm, compassionate thoughts and gentle hugs,
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hello all, I am mTNBC I will be starting Xeloda this week. Was on Enhurtu but developed pneumonitis. Thank you all for the helpful info about hfs. I have CeraVe and the Utter Cream with urea on order. Do you recommend any specific gloves or socks? Are they necessary? I struggle to sleep with socks or gloves so wondering if anyone felt they were really important or improved outcomes.
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@edtmjones I got some cheap cotton gloves from Amazon and wear cotton socks to bed. Then my feet get hot and I take them off. I just wear them until the cream soaks in a bit. Voltairen works well with a layer of aquaphor on top. I haven’t had too many issues with it. I think you have to be on top of it and the key is prevention.
Since I’ve started Xeloda my tumor markers are trending downward! Yay!
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AJ So glad to hear good news!
@edtmjones I also use cotton gloves with Aquaphor, and also use Voltaren at times. I usually don’t last the whole night with my hands and feet covered. So what I usually do is lube up a couple hours before bed, while I’m watching TV with the hands and feet covered. Best wishes.
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@edtmjones I have been on Xeloda for 6 1/2 years and the best thing for most of us to prevent sore and infected hands and feet is to be careful with high-folic foods.
The literature that comes with the pills also says to stop any folic acid supplements. I had severe foot infections for 2 years before I finally remembered reading about eating less spinach, broccoli, etc. I was eating way too many of those foods. Cutting back on them has made a huge difference and my hands and feet are only dry now. And since I am eating moderate amounts of those foods, my folic blood levels are normal. So I was OD-ing on the greens, etc.
I use Aquaphor on hands and feet at night with silicone socks and food service gloves. During the day I use Aquaphor and cotton socks. And I often apply Gold Bond diabetic cream for very dry hands….or something similar.
I don't agree with using Voltaren since it should only be used short-term so as not to cause liver damage. And if you eat the right foods, you won't have the burning hands and feet anyway.
It is hard to get used to the gloves and socks, but they are necessary.
I am at 22 1/2 years of Stage 4 MBC de novo, and Herceptin with Xeloda has kept me NED now for 6 1/2 years.
Another note….the normal dose is about 2,500 mg a day at 7/7. If your doctor prescribes a higher dose, you might have immediate reactions and should have the dose lowered. My onc won't give anyone over 3,000.
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Hello ladies! Well, I’m back to Xeloda. I’m on 3000mg twice a day and seem to be doing okay. I did my first 14/7 and didn’t have too many side effects. Mainly my feet peeling. I just started my next 14/7 last night. Here’s to hoping everything goes smoothly! I will say though, I’ve had some weird symptoms that may have to do with my brain and I’m super worried. For about 10 days I kept having spasms in my arms where sometimes I threw whatever was in my hands. And I’ve been really spacey, just kind of staring off into space and forgetting time. And very vivid dreams. My MO put in for a brain MRI. Any thoughts on these symptoms? My spasms only happen once a day or so now.
Hope everyone is doing well!
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Hmm, please let us know when you hear back about the brain MRI, @katyblu! Hoping for the best. Have you tried any creams for the feet peeling? One with urea as an ingredient might be effective at moisturizing. Folks with eczema often use moisturizers/creams with urea.
Some folks in the Zoom meet-ups have recommended Udderly Smooth, which contains 20% urea. Lots of other options however.
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Thanks for the suggestions for the feet cream! I started using the working feet one, but I think I’ll pick up the Udderly Smooth as well.
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Let us know how the Working Feet one works, @katyblu! Always good to have multiple options to suggest to folks in case one works better than another. Is it this O'Keefe one?
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@katyblu …. you are taking 6,000 a day?????? Please tell me that you mean 3,000 a day!
Be careful with the Urea products since you don't want your feet to peel too much. I tried the 40% urea at first and it was a disaster! My feet were raw and bleeding and I could hardly walk. Of course, back then I didn't know about the folic acid problem. So that didn't help.
Good luck with the brain MRI. Those aren't typical indications of brain mets, as far as I know.
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Katy, you might want to consider the Faslodex and it's concomitant low estrogen as a big part of your "brain problem". I'm on Faslodex and I can get real spacey like you described (brain fog), and I also have vivid dreams. I think a lot of the anti-estrogens can cause vivid dreams. I don't know about the throwing things, but Faslodex can cause muscle spasms and tension. Just another possibility to consider. I'm really sorry this is happening to you, and I hope you get some relief real soon.
I also find it helpful to look up, "Does low estrogen cause (enter side effect)?" in Google, and you'd be surprised at all the things that low estrogen can cause that don't show up on the Faslodex side effect lists, and that you might not think/know are related. You might also find it helpful to use the search box here and plug in Faslodex. Many have written about their side effects. Just remember it is both Faslodex and low estrogen in my book, and many of the symptoms are overlapping. Hope this is of some help.
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I’m in the middle of a 5 week capecitabine hold due to anemia and hip replacement. My hemoglobin dropped to 8 again, from this oral chemo & surgical blood loss. The recovery from the joint procedure has been rough. My husband is my nurse until I can do more things. I planned ahead for meals however he’s not good with laundry…
Protocol for the anterior approach to the ball and socket allows some people to go home the same day! I had a night in the hospital but was very weak upon discharge. As many of you can attest, it’s not easy to sleep well there.
The PT (physical terrorists) cram in 3 sessions so they can certify that a patient is safe to be released. I’m using a walker around the house and only leave for medical appointments. It’s a bit worrisome to be off of effective therapy for so long although my tumor marker 15-3 keeps dropping. I’ve also suspended use of my diclofenac gel hand/foot treatment.
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hi Ladies, I’m an active browser but hardly post because I feel I have very little to contribute. I was diagnosed MBC in 2022 with met to bones and lungs, and met to brain this year. I started Xeloda in January, TM showed it’s not working but MO keep me on it and addedTaxol, I have to more weeks to go with Taxol but my TM is still going up, it went a lower 3 weeks ago but it went back up to the 1700s. Any idea what is next for me? I haven’t had scan since Feb 2024. Taxol made feel better but I’m not getting better. I have no pain but I’m weak, and find myself catching my breath.
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So this is my CT scan result. I will see my doctor on the 24th. Nothing significant, but a whole lot of stuff that makes me feel like I am 200 years old.
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