All about Xeloda
Comments
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After 2 years on estrogen blockers, my cancer has progressed due to the continued increase in my tumor markers. Hopefully I do not yet have tumors in my organs. I will have CT scans of different areas to confirm this. My onc prescribed Xeloda twice a day 1500 mg. Two weeks on, one week off. I will probably start a week from today. I compiled a list of foods high in folic acid. Please comment on the foods that are worst for you while taking Xeloda so I will be sure to avoid them. Avocados? I really like them! Have they caused you any trouble?
- 1.Garbanzo Beans
- 2.Liver
3.Brussels Sprouts
4.Lentils
5.Spinach, darker green lettuce and greens, like romaine
6.Asparagus
7.Avocado
8.Beets
9.Enriched Spaghetti
10.Broccoli
11.Great Northern Beans
12.Fortified Cereals
13.Cantaloupe and Oranges
14.Seeds and Nuts – peanuts, tree nuts: sunflower seeds, almonds, hazelnuts, cashews, Brazil nuts, macadamias, walnuts, and pistachios.
15.Tropical Fruits - papayas, mangos, guavas, and jack fruit
16.Strawberries
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Woodlands-all of the above. What really made my feet horrible were my big spinach and avocado salads for lunch for over a week.
I can eat a little of the above...very little. But I have been eating veggies moderately high in folic acid since April and my feet are soooo much better.
Everyone is different as far as folic acid reactions. So go slowly and eat very small amounts of those that you have listed, if you have to.
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Woodlands, I’m on the 1500mg twice a day 7 on and 7 off. If the side effects are too much, maybe you could do the 7/7. That’s how I started. My tumor markers have dropped. My CEA went from a high of 8.5 down to 3.2. My 27-29 went from 374 down to 252. That’s in two months. Not bad!!! I hope yours drop too!!
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WOODLANDS: I log in my food consumption on Cronometer website. It is free and fabulous - easy to download and use. One of the items it automatically shows is the amount of folic acid in anything that is logged into your food diary. If you do not want to keep track of your food you could enter a food item into your diary and the amount of folic acid will show up. You could delete that item (right click on it and delete) and enter something else. Otherwise the amount of folic acid would be cumulative. Hope this helps.
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Hi All. I left Xeloda a few months ago, but was wondering whether there is anyone on here who lives or knows Colorado Springs? I will be moving there soon and need a recommendation on an oncology center.
Thanks. Chris
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I don't know of an oncology center there but it is a lovely town and hope you enjoy it a great deal.
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Woodland, I had no adverse reactions with Folic Acid when taking Xeloda. Some people may be more sensitive to it, not I. I ate everything. I dropped from 1500mg twice a day to 2500 a day (3 pill s in morning 2 in evening) 14/7. I eventually starting heading towards a total of 2000 mg a day, or taking a break on day 6 or 7. Others on the list have a 7/7 schedule. The original testing was done with 14//7 so that is why some of us are started on this schedule. Some centers have opted for a 7/7, I don't think there has been any definitive testing as to the best schedule. You and your MO will look at your side effects and should adjust accordingly. See what really is too hard for you. I managed with creams, special shoes, and silicone toe caps to keep the toes separated so they wouldn't rub, but that is later on in the treatment.
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Just started Xeloda 5 days ago. Extreme depression, sadness, weeping, anxiety, began the second day. I spoke to two others who had taken Xelod and they experienced the same. They say it gets better with time. Wonder if anyone has experienced this. Coming into Christmas time, I don’t want to feel sad.
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Lordmandy,
I think the above discussion covers this -- others have reported the same thing. I am on a 7 day on/7 day off xeloda schedule. On my 7 days on, after the first day or two, I get very weepy and also very grumpy. I take Ativan for nausea (works for me) and I think it also takes the edge off of the anxiety. You might think about Ativan. I've been on xeloda since about late July. I don't think things have improved re all of this -- and I really don't like the way the drug makes me feel.
Good luck.
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Lordmandy- I hope this goes away soon, I feel like it saddened me early on also- I really don't have that anymore and I wondered how many other things were involved like just having progressed so needing a new medicine etc. I am back to happy most of the time- just remember everyone is different and responds differently to medicine- I love Ativan for anxiety and sleep- only use intermittently tho. good luck- hope you feel better very soon,
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My husband would attest to the grumpiness. I will be fine one minute and snap the next and then be fine again. I’ve also had the sadness, but it’s gone away for the most part. I had some tears in the beginning
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First time I forgot to take my pills this morning. Had my grandson and just forgot. Do you all skip the dose if you forget? I won’t be home until about 1:30. Usually take them at 7:30.
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If I miss a dose I don’t take it later in the day. I think there may be something in the Xeloda directions about not to take it later but you will have to check. I have my phone set up to remind me twice a day, at 8:30 am and 8:00 pm, to take it. Without this reminder, I would almost never remember. It can cross my mind at 8:27 am and I will absolutely forget, get absorbed in something and be surprised when the reminder goes off three minutes later: “Oh! Time to take meds.” With the phone set up this way it’s rare I miss taking X.
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Thank you, Divine. I’ll wait. I had a timer with Ibrance. I just set up a reminder now so I don’t forget in the future
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In my 4 years on Xeloda, I have had to skip some pills, like when I had to fast, etc. My onc said that it is fine to just add it to the end of my cycle.
The pills aren't on a cycle or anything, and all that matters is getting it in sometime.
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Hi, Denny. That’s a great idea. I’ll add it in on Monday, which should start my week off. Thank you
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I forgot it once- didn't realize until I had two pills left at the end of the cycle- oops. what I do which I think I learned from Denny- is at the beginning of the meal, I put set a timer for 34 minutes and start dinner- then take the pills when the timer goes off (~20 minutes or so after meal) I would forget often if I didn't do that. f
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Yay me! Today is the start of my 20th year of Stage 4 Metastatic Breast Cancer de novo! 20 years of chemo sure has been a challenge. And after 20 years of CT and PET scans, why don't I glow in the dark? Doing my best to hang in here and I sure have been Blessed!
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Denny, wow, congrats!
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Denny,
And may there be many more! I was originally diagnosed in late 2003 (not de novo), so not that far behind you, but I'm cheering you on as you continue down this path.
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Denny and BevJen, Congratulations to you both! I hope you have many more years.0
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Denny, I'm so happy for you. That's amazing.
BevJen, you too. It gives me some hope.
Nkb, I had been doing the timer and then stopped. Should probably start it up again.
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BevJen & Denny, Wow...just Wow! How long have you been on Xeloda?
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I just started xeloda a few months ago (very low dose). That was. not my miracle drug -- I was on letrozole from 2006-2019 with absolutely no known progression.
Denny has been on xeloda a while, from what I understand.
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Nopink....I have been on Xeloda for 4 years. Lots of fun.
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I know a lot don’t count on tumor markers, but they’ve been a huge indicator for me. My CA27-29 started out at diagnosis at 490. With two years on Ibrance and Letrozole, they barely came down 100 points. Got my latest results after two months on Xeloda and Fulvestrant. They are now 176.5. I’m so happy. But that’s not all. My CA15-3 started at 220. Again, barely came down on Ibrance. Xeloda for two months. It’s down to 81.8. My CEA was the highest it’s been two months ago at 8.5. Not super high but the highest and was creeping up every month. Last month it was 3.2 and this month 4.1, still normal. I think Xeloda and Fulvestrant are working finally. I feel better and can eat again and gained back four pounds in a month. It’s going to be a good Christmas. Woot!
Cross-posting in de novo thread0 -
KBL...Yay for you!
My CA 27-29 have never been accurate. It is always in the normal range even when I have active mets. I am glad that yours are indicative.
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Denny You are an inspiration. I was diagnosed 8 years ago and have wondered how long I can last with MBC and on Xeloda.
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Thank you, Denny123. I appreciate it so much
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Day 9 of Xeloda and this afternoon I feel like I've been hit with a ton of s**t bricks. Big D, cramps, pain, gas--TMI, I know. Took 3 Imodium and starting to feel a bit better. But, worried it's going to be like this for the next 5 days of the 2-week cycle. If it's not better by Thursday, I'll call the MO's office. Anyone have any advice or have a similar experience? Does it get better?
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