All about Xeloda
Comments
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Lynn...I use a typical two-sided foot scrubber, that has a corse and a fine side.
I start with the rougher side first and than the smoother one till the skin is as good as glass to the touch
I then apply the cream...any cream will do.
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Thanks, Miaomix. I actually have a couple of those foot sanders. Great idea. I would have been hesitant for fear that I would be doing damage. So good to know.
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I am on my third round of Xeloda, 14 days on, 7 days off. I started on 5 x 500 mgs daily and have just been reduced to 4 x 500 mgs daily. My hands and feet have been pretty sore most of the time but my philosophy with cancer drug side effects is to try something different every round to see if I can get better results.
With Xaloda KEEPING MY HANDS AND FEET COOL has been the best bet. Cool weather is my friend! Most days I can walk barefoot and find an hour on my cold kitchen tiles buys me an hour to go out and get something done. i wear only open soft sole flip flops out and soft bottom socks in the house if I can't manage barefoot. Most nights in addition to udder cream sock and gloves, i use a Koolit ice block wrapped in a thin washcloth and a gallon ziplock bag. i try to keep my feet in contact with the ice block as it makes them feel more cool and comfortable. Warning, don't use an ice block directly on your skin. I was advised that you can get frostbite from this. I keep my feet out from under the bed sheets as best i can.
Consuming ANTI INFLAMMATORY FOODS AND SPICES and avoiding salty foods which tend to cause water retention also seems to help. I pay attention to how my hands and feet feel after i have eaten. Pain involves inflammation, so anything you can do to reduce the inflammation should help. Good luck and keep experimenting to get better results.
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Hi Sal2, and welcome to Breastcancer.org!
What wonderful, first-hand advice you have shared. We're sure it'll help many others! We are glad to hear you have discovered some relief, and hope it will continue.
Please don't be a stranger here. Come back often, share your experiences, and continue to support others and get support. We're all here for one another!
--The Mods
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iI just went off of AA after one month on AA. Most miserable month ever.
I will start X on February 18. She is giving me a washout period.
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Grannax— xeloda is the easiest protocol I’ve been on including the hormonals.
I hope you get great benefits and no side effects
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Hi.
I am about to start Xeloda on Sunday. Worried about the GI issues and the hands and feet problems. Is there anything I can do beforehand to prepare? Been done radiation treatment for a month and feel better. Now have to look forward to feeling bad again. Any suggestions or comments will be deeply appreciated. Thanks0 -
Ihopeg, my first bit of advice is don't look forward to feeling bad! I think many find X to be their "favorite" treatment, very manageable. Stay in touch with your onc and/or onc nurse. An adjustment in dose or schedule can do wonders if you are having a hard time.
To prepare, I would say just have some food on hand that is easy on your digestion for your first couple cycles in particular as your body adjusts to the med. Maybe see that you have some bananas, rice, applesauce, and toast (classic anti-diarrhea foods) available in case. Also anti-inflammatory foods like ginger tea. Make sure you have soft socks and comfy shoes. Lotion of course. And gloves to protect your hands if you have to use household cleaning agents, etc. I also use sun protection and lubricant eye drops. Really, it just becomes routine to protect your hands and feet, and go about your life. At least that’s my experience.
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There is nothing that will get rid of HFS, I did not have any issues with that until maybe a year or two into X. If you look on page 313 you can see pictures of my feet and another members hands, my hands look exactly like hers. I had GI issues when on a high dose, 7 pills a day 4/3. I also got a horrible itchy rash on most of my body, including my face, also dry blistered lips. I have tried many different dosages with 14/7 and 7/7. Currently on 5 pills a day, 14/7. Been on X for 4 years. I deal with the HFS as it's better than the alternative!
Wishing all a long run on the Madame.
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I have found that while I can’t get rid of all hfs, the care I take keeps my hands and feet as good as possible. For example, wrapping dental floss around my fingers causes painful cuts, but switching to those little plastic pre-threaded flossers eliminated those cuts.
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I want to second Miaomix's recommendation to lightly sand feet before moisturizing. I use a 40% urea lotion to break down the calluses. Then once the urea lotion is dry (white and chalky), I soak my feet a little and use a foot file to remove dead skin. After that I apply a thick lotion. I use a Gehwol Swiss wooden foot file (coarser on one side, finer on the other) and Weleda Skin Food lotion, although I'm sure similar products would work too. I was hesitant to pass on this information, because I've only been using this technique for 2 weeks, but it seems to really help. I just finished my 4th cycle of Xeloda and my feet were better this cycle, although definitely still an issue.
Joyner, I ordered the cotton socks from Amazon. The Weleda cream is thick and greasy, so I can use more cotton socks.
I also agree with Sal2 that icing my feet (especially starting about 30 minutes after taking Xeloda) really helps.
My feet don't tolerate hiking now, but I have been able to do a cycle class every other day. I shifted my Xeloda schedule so that if I exercise, I take my Xeloda later in the morning, so that theoretically I use my feet when my Xeloda blood concentration is lower. I end up taking Xeloda at 10am and 10pm.
I hope that something that I've tried will work for others! I pray that Xeloda will be an effective and long-lasting treatment for us all.
Very best wishes! Theresa
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I'm going to write all this advice down. I start on February 18 by that time I will have a mountain of products and a thick notebook of tips. I WILL be ready!
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I’ve been on X for 15 months. I still have a big bottle left of Imodium that I bought initially. Found some in the glovebox the other day too. Hopefully it will be an initial SE.
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I'm looking forward to joining this thread in about two weeks.
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Hi everybody, I started Xeloda two days ago, 14/7, 2 x 1000 mg a day, as part of a clinical trial. Soft cotton socks, cream and ice packs are ready. Should I start icing and creaming now, before the HFS starts? Thanks in advance for any advice you may have!
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Start now with the lotion every day to keep your skin as healthy as possible. You can rinse and cool your feet a half to two hours after taking your pills or when your feet feel hot and sweaty. Or just at bedtime right before lotion like I do now. The theory is that the chemical comes out in the plentiful sweat glands on the soles of the feet and palms of the hands.
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Especially for our Xeloda newbies, I am here re-posting something I posted on this thread June 2017:
Regarding Hand-foot Syndrome --
This resource may have been posted somewhere on this 241-page thread, but I recently found an article from July 2010 Oncology Nurse Advisor entitled "Prevention and management of hand-foot syndromes". I will very briefly summarize some main points about causes, prevention, and treatment; along with some ideas that occur to me.
Possible causes and prevention:
Small amounts of the chemo leak out of the capillaries into the hands and feet, damaging tissue. Therefore avoid heat, pressure, friction, and harsh chemicals on hands and feet. Some examples would be hot water (incl. with rubber gloves that trap heat), sun, saunas, tools that cause a lot of pressure. So be mindful when you cook, garden, build, etc.
Local delivery of high drug concentrations occurs through the sweat glands, of which there are many on the palms of the hands and the soles of the feet. My idea about this is to wash the hands and feet a couple hours after the pills (peak blood level), and whenever they feel sweaty. I also change my socks a lot, and take off my shoes when I am sitting for any length of time.
I asked my onc if I needed to take these precautions on my week off, and she said probably not. The drug has a short half-life; it is out of your system fairly quickly. (But I do baby my hands and feet anyway.)
Possible treatments:
Dose reduction
Pyroxidine aka Vitamin B6. I wouldn't take a supplement without my doc's advice, but I figure I might as well pay attention to foods that have a good amount of B6, such as turkey, chicken, salmon, eggs, cheese, lentils, beans, carrots, spinach, garlic, bananas, whole-grain flour, chia seeds, and pistachios.
Cyclo-oxygenase-2 (COX-2) inhibitors to reduce the inflammatory response. e.g. The NSAID Celebrex. Ask your doctor. I did a bit of research and found that oregano, holy basil, and ginger may have similar (though I expect smaller) effects, so I cook with them.
Vasoconstrictive therapies such as localized cooling. So I rinse hands and feet with cold water, especially a couple hours after my pills or whenever they feel hot.
Topical emollients, especially those containing lanolin. (Lansinoh is a nice one; find it in the breastfeeding supplies section. It is too thick for regular use but superb to help broken skin heal.) I also recommend O'Keeffe's Healthy Feet, which contains urea; Shikai Borage Therapy Foot Cream, and Everyone Lotion with coconut oil. These are all paraben- and fragrance-free.
I hope these notes will be helpful. Here is a link to the article.
http://www.oncologynurseadvisor.com/ce-courses/pre...
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Thank you Shetland for the information!
Grannax, I think you will like Xeloda! I find it more tolerable than IL. I can't wait to see pictures from the fashion show! Thank you again for representing all of us!
Hugs and prayers,
Claudia
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Thought I'd mention for those new to Xeloda that studies have shown (can't find them at the moment but hopefully someone else will help) that using creams with urea twice a day showed less hfs side effects. I use the utterly smooth with 20% urea morning & night and then some other thicker creams during the day. You will have some flaking of skin but is more like the sanding that someone was mentioning a few posts back. It keeps the hard callouses from forming which play a role in some of the peeling that we are trying to avoid. Hope this makes sense and helps!
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Hi,
I start Xeloda tomorrow I week on one week off 1500 mg twice a day. I have a question. I’m starting to feel like 2 of my teeth are bothering me. Seems like I have bad taste on left sidef my mouth, and slightly sore. ( worse taste than usual). Messaged onc and didn’t hear from her yet. Should I try to get appt at dentist today? Afraid of infection and whatever they give me at dentist. Thank you, Ilene0 -
i would try to get in touch with dentist,, see what they think is needed, but i would not go ahead till you discuss with onc although worse case is you delay start of xeloda an week or so
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proudtospin,
Thanks for your response. I don’t think onc will message me back on a weekend. I hope so. I know the dentist will want me to come in. I guess I’ll wait to speak to onc Monday. Thank you Ilene0 -
I have been on X for a year now and am still NED, which is a miracle for me as a 17 year MBC de novo survivor!
I am on X at 2,000 a day one week on and one week off, plus Herceptin IV every 3 weeks.
My onc prescribed this for my feet- Ammonium Lactate 12%...it is a cream that I use twice daily. I had been using Aquaphor which I like best since it is a thick ointment. But on the Ammonium stuff, I haven't had any foot splits for a week! I still do use Aquaphor in between using the Ammonium stuff.
He also prescribed Clobetasol Propionate cream 0.05% to be used for one week for painful areas. I guess that I should save that for the splits or the sores and haven't used it yet.
Ihoepeg-I have been on chemo for 17 years and have had all kinds of dental surgeries. Since I have implants, I do use Cleosin before any invasive surgery. Otherwise, there should be no problem with any procedures.
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Denny dear....have you ever been on Xgeva or Zometa?
I noticed you have never been on anti hormonals and maybe you didn't need the bisphosphonates....??
I envy your freedom to have dental care without the fears of dire repercussions.
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Ilene, are you on Xgeva? If so, you to need to talk to your dentist if you're having any tooth issues, I think.
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Miaomix...I have been on Bisphosphonates for about 20 years or more for osteoporosis. But I have no signs of osteonecrosis.
I don't have BC to my bones. I am currently on Prolia, had Reclast once, but quit since I lost a lot of hair.
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Good for you Denny! You’re beating the averages in every department! I’m very happy for you! It’s encouraging....
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I'm on my second round of Xeloda and have really bad muscle pain around my knees an inside calfe almost not bearable. Any suggestions what I can do. Around 5 a clock in the morning is worst
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hi Josalo...that's caused by a lactic acid buildup.
I have found 400mg of Magnesium Citrate taken daily helps to relax all muscles and relieve those types of aches and pains. Also soaking for twenty minutes in warm water in which 4 cups of Epsom salts have been dissolved will do the trick,
Take the magnesium before going to bed with your last meal or bathe during the day.
I hope these remedies work for you as well
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JoynerL,
I just started taking Xeloda today. I am not on Xgeva. Wish me luck!! Thanks, Ilene0
