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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