All about Xeloda
Comments
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Lovetosing. That's great news. I'm hoping that after my scans on 6/27 I can take a 2 week break to help with the hfs. Enjoy your time off X and do the happy dance !
Babs
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Hi;
How long are we supposed to take Xeloda? Is it forever?
I Get really bad heartburns that won't go away.
Thanks
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We take X until it stops working which hopefully is a LONG time!!!!
Babs
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So glad to hear of everybody's good results!
Timothy- My Doctor at Sloan Kettering is starting me on the 7/7 protocol. I was hoping to start on Thursday, but apparently it requires insurance pre-authorization first. I am hoping it will go through on Monday, so I can get started.
My doctor also said I'll be okay to travel, so no need to cancel my road trip.
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really Babs? Do the side effects get better? I hope so
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On day 4 I woke to horrible chest pains and burning. Onc said to go ER. No heart issues. I didnt take pills for a day and felt better. Onc said to take antacids. I am still having episodes occasionally. Thinking of lowering dose myself. Scared it could be coronary spasms and not heartburn. We are traveling the country in an RV for the next 6 mos. I can't really do another treatment. Anyone else have this burning and palpatations
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Ziz- For me, the major SE has been the HFS which has gotten progressively worse. This week I went to a dermatologist at MSKCC who prescribed 2 ointments for my HFS:
1-6% salicyclic acid cream-because I have medicare the cost at the local pharmacy was $100. After shopping around I bought it at a special pharmacy for $40.
2-.05% Clebetasaol foam-local cost $500 still trying to find it for a normal price.
I started using the salicylic acid and it is working! Has anyone else used these 2?
Before I started X my husband's best friend who's a gastro Dr put me on a probiotic and thank gods I haven't had any GI issues.
Babs
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Thanks Becs511, can you let me know what dosage you start at, and whether there is any planned changes to the dosage?
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Babs what type of probiotics did the Dr. put you on?
Ziz
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Ziz...I'm new here and this is my first cycle of Xeloda...today is day 5...starting on a large dose of 2000mg twice daily...I have been taking a probiotic every day..either Align or just a generic form...GI symptoms are pretty mild...I always take the Xeloda with food in my stomach...I know the side effects will probably intensify later in the cycle ...I'm on 14 on /7 off...crossing my fingers and hoping for the best
Babs...keep us posted on your topical treatments for HFS..hope they keep working for you
Feeling like a lump on a log ...seriously need some motivation to go to the gym and get some exercise but the forecast is in the 90's here
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Stilts thank you for the information about the prebiotics I will see if I can get it here in Costa Rica but if not I will order on amazon.
Cheers
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Ziz
The one our friend recommended is FlorAStor. I take it daily and also take my X after a meal and with lots of water!
Hope this helps
Babs
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I am on day 8 of Xeloda, 14 on/7 off also. So far the biggest issue I've had has been some heartburn. I'm really dreading the HFS. I've also noticed the fatigue has really hit me the last couple of days. It's too hot here to go outside for long and I am really missing wearing flip-flops....lol.
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Sue, I get that burn in the chest on occasion, but not anything horrible that I need to choke down more pills. My husband gets terrible heart burn, and was on Omeprozole (sp) for a long time. I was having some stomach issues so he got me a supplement (Zypan), which I never took. So he tried it, and he hasn't taken any Omeprozole since. I think the nice thing about this, is that it's a supplement, and not a drug. Traveling the country for months, how fun. Where all do you plan to go? I highly recommend Utah west and east, Zion, Bryce Canyon, Moab.
Babs, my SE's have gotten progressively worse too. I start my week break today, and the bottom of my right foot has some nice cracks in it, the heel and the outside side the foot. I have Clobetasol here, small tube, only 15 grams, 0.05% Clobetasol Propionate. We must have at least 40 tubes of it. Never cost us anything, so DH just let our mail order pharmacy just ship it.
Tedmom, I really miss my flip flops too. My cuticles on both hand and feet are almost white, very dry and even sort of sharp. I have nails that have a fungus now and they are growing away from my skin, so lifting. They look sort of raw and red, and then having the feet exposed, I think makes the H/F worse. My feet are not pretty, but not too bad. I always had polish on my toes, now I don't want anyone to see my feets!
I'm not much of a morning eater, so I tried an Ensure the other morning with X and didn't have any issues. Triple digits here, so understand the heat! Hot over the entire country today!
Have a great week everyone.
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Goldie, how long have you been on Xeloda? I am on my first cycle (day 10 today) of 2150 mg. twice a day, on 14/7 schedule. Heartburn and fatigue have been my only real issues so far. What have you used on your hands and feet? My MO told my to use Udderly Smooth during the day and Bag Balm at night, wearing gloves and socks to sleep in. My DH calls me MJ, for Michael Jackson because of the gloves. What a comedian....
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Ted, I only know that I have been on it for over a year. Vicks Vapor rub with gloves and socks helped sooth it. It doesn't get rid of it. I'm trying Clobetasol now, however I'm on my "off" week, so things should ease up a little.
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Tedmom...I'm on day 7 of my first cycle...14 on /7 off....2000mg twice daily so we are pretty similar...GI issues mostly so I take a probiotic every day...Seems like I am nauseated in the morning but it improves throughout the day...I am using the Udder cream at least daily...will be interesting to hear how the Clobetasol works for Goldi
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I'm on my day 9 and It was my best day, no heart burns, no fatigue, etc. I just felt normal. I played tennis for 3 hours, did the grocery shop, cleaned the houseand took the kids to swimming class. Wahooo I wish and hope this is the way my future lookss like.
Cheers everyone
Theziz
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Interesting that some of you point out heartburn. I didn't make the connection but have never had heartburn until recently. It must be the Xeloda!
As for other symptoms, I have noticed two odd ones:
- my cuticles turn slightly brown and grow super long; I never touched or paid attention to my cuticles before but now have to trim them down at least once a week
- I am extremely hungry during the day (breakfast and lunch) and have no appetite at night on Xeloda (dinner); pre-Xeloda, I would feel minimal to normal hunger during day, with increasing hunger in afternoon and at night, as the day wears on
Anyone else have odd side effects, beyond the typical HFS and digestive issues?
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I went to the dermatologist at MSKCC and he prescribed 0.05% clebetasol foam and salasylic acid for my hfs. I finally got the clebetasol yesterday so I'll let you know how.it works. I've used the salasylic for a few days now and it's helped a bit. I hope the combo does the trick!
Bab
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JFL i have noticed that my hands and feet have become darker (I'm a black ) and I just woke up thinking that I need to cut my cuticles.
Theziz
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Hello everyone. I am my sisters care giver, and have been reading this forum for over 3 years. I thought I would post my sisters results with capecitabine.
First off, I love everyones fight and determination. Don't give up. Stay positive.
She was diagnosed over 4 year ago with Stage 4 metastatic breast cancer. She was started on Gemzar/Taxol which did not work very long. So a little over 3 years ago she started on capecitabine. Started at the basic 14/7 and 3500mg a day. Well that did not last long as the side effects were just too much, but she had an immediate response with her TM/CA numbers. At the time, she was near 2100.
Every oncologist is different as is every patient. She has been blessed that this one drug is so effective for her. There seems to be many ways this drug can be effective. She eventually had the dose lowered to 3000mg a day and was on a varying 7-10 days on then 7 off. Even with the lower days and amount, the side effects were building, but at the same time, her TM's were falling. After 9 months, her numbers fell to 31.
She then took a 3 month break, but slowly the numbers started to leap up to around 400. To make the story short, she went back on for about the same time, with the same positive results and the same side effects. She then took another break, and again the TM's leaped forward. This time though, only into the 200's before the drug got the cancer under control and got her numbers down into the teens.
She now has been on capecitabine for a continuous almost 16 months with a maintenance dose of 5 days on, and 7 days off. Her oncologist is pretty open minded person and willing to try some different approaches. I just want everyone to know that with this chemo, there might be a different approach which might be effective, and lessen the horrible side effects. I have heard of this drug working for some, many years. While rare, she is hopeful that she maybe one of those people.
Thanks and take care. If anyone has questions, feel free to ask. "Maintenance" chemo isn't a great or popular option, but the dose is so low that the quality of her life has been excellent.
Mark0 -
Thanks for posting that encouraging story Mark. Where were her mets?
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I started having these blazing headaches which come and go in 5 seconds. Side effect of X?
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Mark, sounds like you have an oncologist who understands that this is both an art and a science. Thank you so much for sharing your story with us.
Winning, I haven't had this side effect. I have had others though.... like a Chinese menu!
Babs, I so hope that you get some relief.
I have started what I am calling Cycle 9A this morning. Like clockwork, 1/2 hour later the diarrhea. The surprise was the second bout after lunch. I too have much less appetite at dinner, but I have to eat some dinner in order to take the drugs. I generally post dinner on the "What is for dinner thread" so I won't bore you with tonight's meal here.
*susan*
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Hello all.
To Timothy. My sister has bone, liver and lung mets.
To Susan. Her Onc is pretty receptive. He is always asking her about if she is enjoying her time and life. Quality is important.
She takes some vitamins and minerals, has cleaned up her diet with a lower intake of sugars and starches, exercises some.
She also every 4 weeks goes for complete blood work and a Zometa treatment. She tried the Xgeva shot and had a bad allergic reaction.
Take care.
Mark0 -
Hi all!
I started what I am calling cycle 9A yesterday. Oh, after four doses, my scalp itches like crazy, but if I rub the scalp, the itch turns to pain. My husband coined a term that I rather like today. I was mentioning the hungry early in the day comments. This was as I stared at a plate of tortellini salad that we were eating due to a lack of appetite. So Mr. 02143 said something along the lines of "Well, this drug-- it is an appetite disruptor." I like that. Why am I starving at 10am, totally uninterested in food by 1pm, dinner has no appeal, and then starving at 9pm?
It is comforting to know that others find their appetites are disrupted on this drug.
HFS is better on the 7/7 protocol but it hasn't gone away either. Blood markers on Tuesday which will let me know if this new protocol is giving the cancer an upper hand.
*susan*
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Susan
Hoping the new protocol is kicking your cancers tush!
Babs
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Hey X girls, how are you all?
I just stopped to let you know that I feel so much better now. I no longer have heartburns.
Take care chicas
Theziz
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Happy to hear that Ziz!
The clebetasol and salicylic acid ARE helping!!!!!
Babs
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