All about Xeloda
Comments
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Are any of you on 7/7 schedule?
HOKA 1 shoes really helped walking - they are so cushy.
I also drank coffee and felt much better after lunch and morning coffee. Felt my best by evening and got more done
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Hi ladies I haven't post on this page and figured I would chime in.
nkb I am on 7/7 as of early July and I am tolerating it much better than 14/7. I was on 14/7 last year and had HFS pretty bad. I have HFS again but is more tolerable and actually just reduced dose from 3,000 to 2,500 My first CT as a newbie to Stage IV is next week so I am praying X is holding me stable!
Hmmm maybe i should invest in the HOKA'S, I currently wear Sketchers and feel pretty comfy with them but I wonder if the HOKA'S would be better? I need to do my "mental health walks" feel better releasing my nervous energy and love being outside. Glad you were able to have coffee and were feeling better. Hope you continue to feel well!
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I am on 7/7 at 2,500 a day. I took an extra week off Xeloda since I have these terrible blisters on my finger and a raw toe. I think that I posted about those?? Possibly from eating corn on the cob.
3 weeks of really bad pain doesn't make me happy. No way could I do any walking...
My fatigue is always there. My bloodwork is okay. I have also found that after I eat, my BP tanks as low as 70 systolic. So then I am reallllly tired. But that is also dangerous. But now before I go to bed, it will probably be high-160 systolic. So I will have to take my BP pill.
I have been taking 5,000 a day of Biotin and it does help my fingernails. My toenails are about all gone.... I have been on Xeloda for over 4.5 years.
My nurses told me that my fatigue is caused by my having over 20 years of chemo. My poor body.....
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nkb, I've been on a 7/7 regimen since the beginning in September of last year. My side effects are mainly fatigue and some nausea. I'm on 3,000 mg per day.
Thank you for the HOKA recommendation.
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I posted this on the MBC forum, and then remembered about this Xeloda topic. Since December, 2021 I take 4,000 mg of Xeloda: 4 - 500 mg pills after breakfast and 4 - 500 mg pills after dinner for two weeks, and have one week off. I am very luck to have very little side effects. This is the first medicine that works for me. None of the others did anything to reduce my tumor markers, plus the original breast tumor has shrunk too!
My MBC friends on Zoom have convinced me to travel while I am feeling great! We will be enjoying a cruise during which I will be on my second week of Xeloda. I want to have a few cocktails during the vacation the week I am on Xeloda and the following week I am off Xeloda. I don't usually have side effects from Xeloda except keeping hand and foot infection at bay by using Udderly with 20% Urea lotion.I am wondering if you have diarrhea the next day after having a cocktail (something fruity with a little alcohol in it, or Baileys and Kahlula? Is there anything I can take in order to prevent a side effect from alcohol? I don't drink at home except if we go out to dinner with friends, which is so rare that I don't have much experience with side effects from a cocktail.
My oncologist doesn't have much to say except thatr it is probably best to not consume alcohol. I am on vacation for the first time in years, and want to live a little with a drink or two. I appreciate your comments and suggestions.
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Woodlands, great to hear from you. Also great to hear Xeloda is working for you.
I wholeheartedly agree with your friend that it's a good idea to travel while you're feeling great. I also think having a few drinks on the cruise is perfectly fine. I don't drink much but love a margarita from time to time, and a frozen margarita is even better! And I will drink champagne at midnight on New Year's and will treat myself to a mimosa the next day with left over champagne. I have not noticed getting diarrhea afterwards. First, don't drink on an empty stomach. Don't drink if you get a little seasick and throw up. I think the thing to do is eat a couple of sensible, balanced meals during the day, nothing too heavy and don't overdo it on the vegetables. Through the day drink lots of water. Maybe limit drinks to two per day. And if it were me, I'd pack some Pepto-bismol tablets just in case. I prefer using it over Immodium as it's much gentler on my body.
Btw, when it comes to alcohol, I'm a day drinker. I don't care to drink after five or six pm because I don't sleep well if I drink late into the evening.
I hope you have a terrific time on the cruise!
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Hi, Francie. I will tell you I drink when the mood hits. I haven’t had any issues with Xeloda. The pharmacist told me when I was about to get my first batch that I could have one alcoholic beverage per day. I don’t do that, but there are a few times a week I’ll have a few glasses of wine. Enjoy your cruise and just have fun. You’ll be able to tell if it’s going to be okay or not. My tumor markers are still at the lowest point they’ve been since my diagnosis, and I’ve been on Xeloda a year.
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Good luck Woodlands and I hope that you have a great time! I am the lone objector to alcohol, but I do think that the reason why I have survived for almost 21 years at Stage 4 MBC de novo, is because I don't touch alcohol or take any alternative supplements. My onc agrees with me.
I guess that a few drinks won't hurt you. But the women who drink daily need to realize that alcohol has Estrogen and it also damages the liver which has to process all of our chemo. Since I started out with a liver filled with tumors, I am very careful to take good care of it.
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Denny, I don't drink alcohol either. Never have. I am 6+ years from de novo diagnosis and am just starting chemo in a week. We shall see how I do.
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Anyone develop heart concerns after starting Xeloda?
For the first time ever, I seem to have a fib and a heart rate that can go from 29 to 155 like a race car.
My pulmonologist has referred me to a cardiologist. My first appointment is set for December along with an echo. Can’t get in sooner due to lack of medical employees so everyone is packed for months.
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DodgersGirl, I have not had any heart issues. I just wanted to say I hope they can find the problem. It's ridiculous how backed up some things are. I'm sorry you have to wait.
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Dodgersgirl-I have been on Xeloda for over 4.5 years with no heart problems. Good luck!
Intolight-I am glad that you don't drink either. I never really did enjoy drinking since I don't like to be even slightly out of complete control of my senses.
I have an emergency appointment tomorrow with my onc to talk about my reaction on Friday to my Trastuzumab, which is the biosimilar Herceptin. Starting the end of June, I have gotten tremors an hour after my tx when I arrived home. But on Friday, the tremors happened when I was still in the chemo center. The onc's assistant suggested that I take a break from all chemo for a while. But I don't want to do that. I did take a week off Xeloda since I had bad blisters from eating corn on the cob (too much folic acid). But I started back on Xeloda today.
After 20.5+ years of chemo, I guess that my body is protesting.
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dodgersgirl Sorry to hear of heart issues and potential A-fib. I would hope the pulmonologist office called to try to get you in sooner. So ridiculous to wait that long, did he instruct you to go to the ER if it becomes more frequent? I hope it’s something temporary and a easy fix for you.. in my thoughts.
Denny123- Sorry about the tremors, I would feel the same way as you! Want to keep pushing through and try to live the best life possible. You are an amazing woman to have endured over 20 years of treatment! Sending good vibes and prayers for your appointment on Friday. Bes wishes.
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Cookie54— my other doctors have all told me the same thing— for a fib, they prescribe a blood pressure med plus a blood thinner.
I was already taking both so everyone feels that’s sufficient until I get into cardiologist
Actually, my original appointment was scheduled for early November but cardiologist moved it to mid December due to shortages.
KBL— thanks for the reply.
I have never had heart issues before now. Had a heart cath a few years ago which showed no blockages at all. That heart doctor released me as there was nothing amiss with my heart. Then back in 2017 before first chemos, had echo which was normal. So the a fib thing was surprising to me.
Since this recent a fib thing, I bought a Kardia Mobile and am tracking so results can be given to any of my do
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I'm off Xeloda permanently. I'm in the 5% who develop balance problems as a side effect. It's nice to feel back to normal and able to stand up and walk normally. I thought I would have to use a walker, I was that unsteady. So now I'm only on letrozole. I'm nervous about that being the only med, but I definitely can't do Xeloda.
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dodgersgirl Happy to hear you are on top of this with the monitor, great idea! Our bodies are sure put through the ringer with our treatments. We can certainly do without any other medical crap. Take care.
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wrenn— I was removed from Xeloda today, too. Xeloda wasn’t working for me. Progression city.
Will talk to Onc next week to see what’s next
Hope someone has something to slow down that finish line.
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dodgersgirl: sorry to hear you are leaving Xeloda. When I left it I was put on Verzenio. It worked well for six months but now I have some lesions on my spine. I am not convinced they haven't been there all along and were found now because we did an MRI instead of a PET because of back pain. So I will be starting IV chemo on Monday, with some radiation to get the one lesion that is causing me pain. (We are leaving the others for later if the chemo doesn't take care of them.) So complicated!
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intolight— good luck with rads. Back in 2020, rads helped me a lot with back pain from mets.
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12 months on Xeloda and Faslodex, and my bloodwork is still steady. I’m so appreciative of Xeloda and glad I chose it.
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intolight— good luck Monday. May your next treatment kick C’s butt
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kbl- wonderful news!
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kbl---great news!
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kbl- May you get many more years from Xeloda!!!!
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Thank you, Denny and DodgersGirl. I wish I felt less fatigue on Xeloda, but I’m so appreciative for it at the same time.
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I'm curious, I had Ibrance/ƒaslodex, when it stopped working I was switched to Xeloda (briefly on aromosin first), is it okay to continue on Faslodex when starting Xeloda if Ibrance/faslodex failed? My MO won't let me continue on any drug that stopped working. How do you know which one it was? I see KBL you are taking a combination. the Xeloda worked for 14 months for me, would have liked to have had more time on it. I'm nearing my end of Taxol working (10 months so far), but not ready to give up on it yet.
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I've been on this combo a year. I agree, you don't know which one failed. I'd ask for it if it were me.
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I am on the second week of our cruise. I had my first HORRIBLE bout of hand and foot on the soles of my feet! The redness lasted for 4 days, and now I have white blisters. My oncologist said that I walked too much. Oh well, I guess I can't act like a normal person without HFI after all. Cold baths for the feet, ice, slathering with Udderly lotion with 20% Urea. I am walking very slowly now. The worst pain was in my right arch. I had pressed a pedal that acts like a rudder when we kayaked, only later to learn that my pedal did nothing, just my husband's pedal in the tandem kayak worked. Of course I stopped drinking alcohol. I don't know what to say except, "How do I heal these foot blisters?"
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Woodlands, I found the urea irritated the hfs. These days, after I shower in the morning, I slather lotion, like Curel, on each foot, then apply Vaseline over top and slip on footie socks. Sometimes I apply more in the evenings. I still went to the pool all summer but always showered when I got home and lotioned up.
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Dodgersgirl - what a beautiful way to put our journey with MBC: "Hope someone has something to slow down that finish line."
I am de novo, finishing my third year of MBC. Nothing worked for me until Xeloda, which I started December 2021. 4 different medicines so far! Ibrance 10 months, Verzenio 10 months, Affinator 3 months due to internal bleeding in my stomach!
I feel extremely lucky that Xeloda is working for me because my tumor markers are down to 56 and they hit a high of 198 in April 2022. 35 is considered normal, and I am hoping to see this number around Christmas this year, if possible.
I have had very little side effects on Xeloda, so I know how lucky I am, and I am a very happy person most of the time, not being aware of my diagnosis. I had peeling skin on my index finger at first, but Udderly with 20% Urea removed that problem in a week!
I had my first horrible foot flare up on a cruise I am currently on visiting Alaska, and it is probably a combination of drinking alcohol on the trip and walking 10,000 steps a few days in a row. I used cold water, ice baths, and Udderly with 20% Urea to calm the red and the extreme pain. I think my feet somehow burned, because now that the red lines and red skin are fading, I am currently left with white blisters. Internal burning - very painful.
About 6 months ago we signed up for the Neptune Society, and we pay $50 a month for 3 years, no interest charge. I can choose anywhere in the world to end my days, and the Neptune Society will gather me up when I have passed and return me to my requested home location.
I have asked my husband to secretly scatter my ashes along the beautiful plants I see every day on our nearby park trail. If it is time for me to go to the finish line, I will have medicine available from a right to die state. I hope I live around 18 more years. I was able to convert a life insurance policy from term to whole life, and that ends when I am 83 years old. Sounds like a great age to me with my MBC diagnosis!
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