Xeloda Care tips from sisters and BCO
Xeloda care tips as posted by the divas and the BCO tips at the end
Lynn1
wrote: I'm not taking the Zofran anymore because of the constipation and headaches -- now I'm on Compazine (sp?) -- seems to work just as well on the
nausea. I'm trying a new "routine".....take the
Compazine....eat....then take the Xeloda. I've only done this a
couple of days now, but I think it just might be the ticket for me!!
*fingers crossed*
Lynn1 wrote: Yep...go to http://www.bedbathandbeyond.com/ Then do a search
for gloves. They are called Earth Threaputics Aloe Moisture Ultra Plush Gloves. They have socks to match!
PJB
wrote: Lynn, after I had bouts of the
big D and stomach upset on Xeloda (my second time around the block with that
partciular poison), I started taking Prevacid
(or whatever generic it was at Target) every day. Helped the tummy, helped the
D. Worked for me, maybe it'll work for you I preferred that to starting out
with the big dogs like Zofran and all.... Hope you guys do well! Paula
apple
wrote: about food.. I found it best
in the morning to eat lightly ... wait a bit 20 - 30 minutes, take the Xeloda
and then have a snack. in
the evening I just took it after dinner. you kind of want to surround the Xeloda with food so your stomach
doesn't feel it. My onc. said I couldn't take any antacids
but could take ranitidine OTC generic.. I think it is like Zantac.. might have
mentioned this earlier in the thread. I only had to take the ranitidine a
few times in the course of 5 months. It helps pretty quickly with the
acid stomach feeling. I had horrid
diarrhea last month and did not take enough imodium my onc. said. she also said to regularly add fibre...
who'd a thunk.
oh and btw.. my cancer seems to have dissappeared so
that makes Xeloda easy for me to like.
Alpal
wrote: I'm just going off Xeloda after
close to a year. I've had very few side effects but I gather from other posters
that Immodium might be a good choice for
the care package. Definitely Bag
Balm and maybe Udder Cream. Some people prefer one, some the other. I
was given a zipper bag with goodies supplied by the drug company. They included
a small tube of Udder Cream.
MustangIA
wrote: I am only nearing the end of my
first cycle of Xeloda, but I have had no side effects except a little acid reflux feeling a couple
of days. I am, however, doing preventative things..here are some things I
am using.
Bag Balm/Cotton socks. -- slather feet everynight and
sleep with socks on.
Vitamin B-6 -- 100 mg with each dose of Xeloda (or Vitamin X
if you will)
Protonix (prescription antacid...Zantac or something similar
may work.
Good luck to your Mom -- I know the
SE's can be different for everyone and I'm sure I'm not in the clear -- I
haveat least three more cycles to go, but so far, I find Vitamin X very
tolerable.
K-Lo
wrote: My bcbs paid for everything without a hiccup,
as far as I knew. It must be $100,000 for scans, procedures, Abraxane $5000
times 24 treatments, etc. But $2500/ month for pills, big challenge between me
and them.
Fortunately, genentech picked up the
$500/month copay! Whew.
http://www.xeloda.com/financial/co-pay-program/
ProudMom_Wife wrote: I read on
these boards that Coconut oil works.
So I tried it, and for me it really helped. I would put some on
after I got out of the shower, and throughout the day if I felt that my skin
was getting dry, and then again when I went to bed. It really helped my
skin. It did help with my lips, but still needed to put other stuff on
them like chapstick.
Jul 21, 2011 12:10 pm, edited Jul 21, 2011 12:11 PM by nurse-ann
nurse-ann
wrote: I got one of the
best gifts at the chemo center last Valentines day. It contained several
lovely things but the most useful was several sticks of chapstick. I have these everywhere - my desk, nightstand,
livingroom end table, bathroom. It reinforces frequent application.
Since I was on Xeloda for so long
and then Paclitaxol, I had to really stay on top of the hand and foot issue. I found the best for me was
"Bag Balm" It's very greasy and I only used it at night with
gloves and footies. That got me through.
sunflowerE152 wrote: Vaseline makes a healthy hand and nail
lotion that i used liberally throughout my chemo treatment. During
chemo, my nails did fine. However I am 4.5 months post chemo and my nails
are still growing out.
SpecialK
wrote: sleepdeprived - I had 6 X TCH and also found my fingers cracking where they meet the nail. I did use Aquafor on my hands and feet with
gloves/socks, but I also used it for my lips, along with Rosebud Salve in the blue tin. I
had problems with cracking in my nostrils and a lot of nosebleeds(sorry,
overshare!) and put Aquafor on a q-tip,
put it up my nose and pinched my nose to rub it around. I used Palmers Cocoa Butter on my skin and face.
I used it on my tummy when I was pregnant (many years ago!) and have no stretch
marks, it is great stuff.
FROM BCO
Hand-Foot Syndrome (HFS) or Palmar-Plantar
Erythrodysesthesia (PPE)
Hand-foot syndrome (HFS), or
Palmar-Plantar Erythrodysesthesia (PPE), is a side effect of some types of
chemotherapy and other medicines used to treat breast cancer. Hand-foot
syndrome is a skin reaction that occurs when a small amount of the medication
leaks out of capillaries (small blood vessels), usually on the palms of the
hands and soles of the feet. When the medication leaks out of the capillaries,
it can damage the surrounding tissues. Hand-foot syndrome can be painful and
can affect your daily living.
Symptoms of hand-foot syndrome
include:
* Numbness
* tingling, burning, or itching sensation
* redness (resembling a sunburn)
- swelling
- discomfort
- tenderness
- rash
The following breast cancer
medications can cause hand-foot syndrome:
* Xeloda (chemical name: capecitabine)
- Adrucil (chemical name: 5-fluorouracil)
- Adriamycin (chemical name: doxorubicin)
- Tykerb (chemical name: lapatinib), a targeted therapy
used with Xeloda
Preventing
hand-foot syndrome
Avoid prolonged heat exposure on hands and feet. Heat increases the amount of
medication in the blood vessels and can increase leakage. Avoid hot water
when washing dishes and when taking long showers or baths.
- Keep the pressure off
hands and feet. Increased pressure can irritate the capillaries and
activate leakage. Avoid massaging or rubbing your feet and hands. - Take a break from exercise and stay off your feet -- no running, aerobics, or
jumping while taking medications that can cause hand-foot syndrome. - Don't use hand tools
such as screwdrivers, hammers, or gardening tools. Squeezing your hand on
a hard surface can trigger leakage. - Avoid using knives
-- a chopping motion can cause excessive pressure and friction on your
hands, causing leakage.
Managing
hand-foot syndrome
- Apply ice packs wrapped in a towel or packages of
frozen vegetables to the affected area(s) to help cool the burning sensation. - Elevate your hands and feet when you're sitting or lying down.
- Pat your skin dry.
Rubbing with a towel can be irritating. - Keep your hands and feet moist by using mild skin creams. Try to pat the lotion into
your skin -- rubbing it in too vigorously can cause friction. - Wear slippers
or other loose, well-ventilated shoes. Don't wear shoes that are too tight
or rub on your feet. - Stay away from harsh chemicals such as laundry detergents or cleaning products, which
could make the condition worse. - Talk to your doctor
about lowering your chemotherapy dose or changing your treatment schedule.
Your doctor may temporarily stop your treatment until your symptoms
improve. Your doctor may also prescribe corticosteroids that you can take
by mouth or apply to the skin in order to reduce inflammation. You also
can ask your doctor if taking pain relievers such as acetaminophen (a
brand name: Tylenol) might help ease any discomfort you have.
Comments
-
Wow - thanks Kathy!
Haven't done Xeloda yet but just know I'm going to be swallowing it at some point on the rollercoaster...
Lx
-
We sometimes call that "choking it down" but it has helped many!
-
I just picked up my Xeloda and Tykerb today-wondering wether to go ahead and start tonight or wait until saturday when I am not at work.. Glad to find these tips. I read thru the whole Xeloda thread and took notes-nothing beats hearing things from those wit first hand experience.
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K-Lo, Thank You, This is great!
Was wondering if anyone has gotten brown spots on the hands & feet? I have a few on the bottom of my feet and now have about three light ones on the tips of my thumbs. They almost look like freckles or beauty marks that we get on the body.. well at least I have them. These spots on the H&F were not there before I started X. They are on the areas that are irritated like the tips of the thumbs.
Thanks
Hugs Suz -
Thanks so much for posting this information. It is very helpful and appreciated. I have been on Xeloda for the past five months and definitely have had trouble with the skin on my hands and feet. Sometimes my hands feel so tight it is hard to use them. Despite this, the treatment is working so I am thrilled. The best to all.
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For the nail lifting and potential loss, as the skin around the nail thickens, it can trap bacteria and cause a secondary condition that will cause the nail to fall off. When I treat my feet and hands (morning and evening) I take an alcohol swab and go around each nail side and cutical before moisturizing. While they still feel funny, I am having no lift at all.
With my hands, I simply use a moisturizer all day long - Burt's Bees hand repair is wonderful! Only the very tips of fingers are numb and I not resorted to wearing gloves yet. I have only been on the Xeloda since October 2011 so I am sure things will accumulate and eventually, gloves will be an option.
On my feet - I also do the nail thing and no hint of any lifting. I also alternate what I put on them - Bag Balm, Curel intensense lotion, Burt's Bees foot cream and Heel-tastic. Sometimes I will use things together. I keep socks on most of the time allowing for an 'airing out' a couple times a week. The heat is not something I have not paid much attention to but after reading the above, I may forego the wonderful hot socks that are so soothing.
It is working since my tumor markers are dropping and my scans are significantly improved from the October scans so I am going to keep on going!
Low
-
Low, I LOVE Burts Bee's. I use many of their different creams & wax's. Just this week I started using the "Almond Milk - Beeswax Hand Cream" Im using it on my hands & feet. Out of all the creams Ive tried this has worked the best on my feet (heels), they stay soft for hours. I normally used it when my finger nails feel brittle but am loving it for HFS. There is one more product thats quite greasy but great to put on then cover with socks.. I have to find it as I cant remember which one it was.
Hugs Suz
-
Thanks K-Lo for consolidating some of this information. I just started xeloda and have stockpiled all the recommended ointments, salves, etc. I hope I can get as good a results as others have on this med.
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Question - I have read on another site that you should adhere to a strict time schedule -12 hrs. apart which does not fit into my eating schedule very well. The information with my med. said about 10 hrs apart. My onc said if I wanted I could break it into three doses - breakfast, lunch, and dinner. So far I have been taking it about 9:00 AM and 6:30-7:00PM. Am I hurting the effectiveness of the drug?
-
Diane, I can only speak for myself. I was shooting for 9am-9pm. Have to take prilosec in am, eat at least a small sonething, take meds. And I have no problem taking a snack before bed.
Mostly though, as a former nurse, I know that dosage time really cannot be exact every day. Do the best you can but early or late has to be better than missing a dose. -
My schedule is dictated by my sleeping - it seems that I have had a weird sleep schedule most of my life so I don't know how to answer the weekly question of 'how is your sleeping' - its normal for me...LOL Seriously, I have experienced a bit of more awakeing at odd times - while I do wear a diaper at night, I am regaining the sensation of having to go sometimes - a huge improvement! I am able to get back to sleep most times.
Anyway, back to the point - my medication schedule is definately impacted by the time that I wake for the day. If I get up at 4:30, I take my morning meds including the Xeloda. If it is 5:30, 6:30 whatever time, I take my morning meds. Then it is a counting the hours for the day so I do not take things at a specific time each day but rather on a 'timed' schedule so that it conforms to a 12 hour schedule for the Xeloda - 4:30am and then 4:30pm - the same for the wake up time each day. While it may be a little screwy on the overnight time - it is only by 2 hours one way or the other and does not seem to impact the effectiveness at all.
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Bump
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I am so glad that I found this thread. I was on Herceptin Zometa and Faslodex. I got the results of my PET Scan today and there is progression on my lymph nodes under my arm and in my rib. The oncolgist stoppped the herceptin and the faslodex. He wants to look into clinical trials first, but he did say the if clinical trials weren't possible I would be on Xeloda and another pill that works like Herceptin/ I forget what that drug was call. I was nervous about the Xeloda because of the hand and foot side effects.
Thanks for all of the tips.
-
X Divas!
Sally Hansen has come out with a pedicure product that is AWESOME for the feet. I really works! There are 3 but I just tried the one - 24 hour moisture and intense healing for cracking and blistering feet. I use it at night and my feet showed improvement in just 3 days - I do alternate with Burt's Bees foot balm, Utterly Smooth, bag balm, and some other just 'feel good and smell good' products for the daytime. I find that treating your feet morning, evening and before bed is the best - give them a good massage at the bedtime application makes the morning wonderful!
I have also found that diabetic socks are a plus - they let your feet 'breathe' and of made of all natural materials. In addition, the nail lift is side effect of the X leaching into the tissue of the hands and feet and thickening of the skin and wrapping up around the nail and traps bacteria - this is what can really cause the losing of the nail as the nail bed becomes inflamed. A little trick is to take an alcohol swab and clean the area at the cuticle and sides of the nails thus eliminating the bacteria - so far, after 5 months on X, nails feel funny due to the neoropothy but no lifting! Yea!!!! I do it on both hands and feet. Keep you posted if it continues to work.
Basically, for the hand/foot syndrome - keep moisturizing and manicures and pedicures help keep the nails healthy.
Best to all the X Divas!
LowRider
-
Crap, I already posted the alcohol thing...but do check out the Sally Hansen products...
-
But when a tip is THAT good, it's worth posting twice! ;o) And the Sally Hansen goodies sound great! Thanks for sharing, Lowrider.
Angelfalls xx
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Hi, greetings from 10.000 miles away.. Istanbul, Turkey.
My mother is on Xeloda 4.000 mg per day, 15 days on, one week off. She is 77 yrs old. She has swollen hands and feet. What worries me is today she has sort of bruises on her left toes. Can Xeloda be the cause of it? She has developed "deep venous thrombosis" when she was first on Xeloda 2 months ago. I will appreciate if you kindly share your experience about this.
Have a nice weekend.!
Soley xxx
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The worst xeloda side effect I am experiencing is depression. Its crazy. Yesterday I started my week on again. Felt like crying over just about everything. This week's depression is more apparant than the other weeks. I've been reminding myself all day that its xeloda week, helps a little. .
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I had that also my 2nd cycle, but not my 3rd. The last few days of the cycle, I cried at the drop of a hat. My husband didn't know what to do with me.
This cycle it's been the hand and foot crap even though I have been diligent with all the creams and socks and gloves. It sure had better being doing something to those cancer cells, cause this sucks.
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I'm lucky I don't have the hand foot syndrome.
So, I can exercise. I find that if I go straight to the health club and work out for 20 minutes after taking the pills, I have a much better day.my idea of working out is lame compared to many, I'm sure. I go on the elliptical for 20 minutes. I have to get out and get going as soon as I take the pills. If not, I lose the energy. So, this cycle, I've been fighting depression and feeling a little tired and nauseous, but I'm able to function. Which is happy
-
dr schholls for her comfort insoles. gel. they are great
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How does anyone get off Xeloda? I've been on it now, at varying dosages, for six months, and the oncologist says it could be years. But my tumor markers go down every month and I know longer have the nausea from the cancer in my liver. He says the cancer in my bones is gone. I don't think I have hand/foot syndrome, at least not compared to what I had when I was on a higher dose, and my intestines are fine since lowering the dose. Genentech is paying 80% of my copay, which means I pay about $70 a month. I guess it doesn't bother me to be on it, overall, but it seems like some of you haven't needed any chemo in awhile. Did you go off Xeloda and not need chemo anymore? Isn't that scary?
-
Hi Michelle in SJ - first, where in South Jersey are you? I lived in Brooklawn next to Gloucester City just across the Walt Whitman bridge from Philly.
Genetech is really awesome in their co-pay program - saves my butt at the first of the year when I have to meet my high deductable. For all Xeloda Divas, do sign up - they also have a free wellness program while on Xeloda and many wonderful tips and tricks to get through it.
Xeloda is a chemo and I will continue on it for as long as it works. Coupled with Avastin every 2 weeks and the 7 on 7 off at 4000mgs a day on Xeloda, tumor markers are consistantly dropping, bone mets is stable and the acities in the abdominal wall continue to disappear. There are some undefined (not conclusively cancerous) on the linings of the organs - nothing in the organs except one small nodule in the lower left lung and one tiny spot on the liver. Scans on the 23rd and I am really looking forward to them...imagine that! It is going to be a very important scan as the abdominal issue I have is quite uncommon - no response to systemic chemo which is why 2 rounds of Abraxane failed but targeted therapy like the Avastin and the Xeloda in the way it works is working. Once reduced to only a few left, a surgical option to remove the last of it could very well eliminate this part of the mets. It has been quite successful in Europe and I am going to want the actual pictures, not just the report in order to help me evaluate whether it is time for surgical erradication.
I am also about to embark on a new alternative - all in addition to the traditional therapy - QiGong (pronouced Chi Gong). There are numerous disiplines within QiGong and I am pursuing the healing version. It is incorporates yoga, belly breathing and focusing your energy toward healing. Foods play an important role as well. With the severity of my bone mets in my spine, traditional yoga is something I cannot do - the yoga incorporated is primarily standing positions and laying down positions - I am certain I can manage that. My EFT/Kinelogy coach indicates it can be quite successful and has a personal friend whose cancer completely disappeared after practicing QiGong. There are many testimonials where the same has occurred. I do not know the specifics of the stages of the cancers in these patients but hey, targeting your Chi to directly target the cancer cells (the reason I want the actual films), your mind is very powerful and trained and channeled properly, one's body can and does heal itself. Mind you, I am not going to be unrealistic in my hopes but if I can make it through that horrid medication issue gone wrong, I must have a very strong will for survival - harnessing that energy (Chi) should yield at least some results with reduction of the cancer cells if not complete erradication and that will be just fine with me!
Once I get rolling, which will be after the 23rd when I get the scan results, I am going to begin a thread in the Alternative Treatments that complement traditional treatment if anyone should be interested in following my progress. Please note - it is highly recommended to learn from a master and not a friend as we make not be doing the moves exactly correct. I purchased Ken Cohen's DVD of his complete 4 part workshop. I got it from my Health and Healing Center but if you are interested in taking a peek - there are two great web sites. Jeff's site is the master that trained my sister (she is always seeking alternatives to enhance her gift for healing and thinks that she has finally found her path - she will be pursuing becoming a master) and Ken's site is quite informative as well. Links are: http://qigong.com/ is Jeff's site and Ken Cohen site is http://www.qigonghealing.com/ . Both are of the same disipline in QiGong hold frequent workshops all over the world. They both have the idealogy that its not about the money so their 4-day workshops are all $99 and they make arrangements with the locations for dirt cheap accomodations.
Ok, Chatty Cathy is done...LOL
Best to all you Divas!
LowRider
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Any of you using Xeloda develop tiny blisters on the inside of your labia? We thought the pain and dryness was from going into "chemopause," but then I got a good look and found she had tiny little blisters on her labia and her vagina looked quite swollen. She finished her first round of Xeloda almost two weeks ago. We've delayed the second round because of her hands and feet as well as her GI tract issues. This just one more thing. No woman should have to go through this!
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One more question about Xeloda. Is anyone doing a 7 on 7 off cycle? I read something about it, but nothing more recent than 2008. Kim's major SEs came during her second week.
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Try reading more of this thread, there are several on the 7/7. I'm just starting so am on the 14/7.
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I'm truely sorry if that was too much information for everyone. I guess at this point it's all science and the brutal details on some of the crazy side effects of Xeloda. I hope none of you experience this. She had to delay round two by a full week. She started it today at a little lower dose. She's doing 3000mg/day for 14. We think the combo of everything all at once is what made things a living nightmare.
- neck biopsy
- hormone therapy two days after surgery
- Xeloda start three days later
- Goesilerine induced menopause
- Yeast infection as a result
- Stereo tactical radiation for brain lesion
- steroids for radiation
- severe diarreha from chemo and augmentin
- hand and foot from Xeloda
One bit of good news is the modes in the lungs appear to be shrinking as well as the mass in her neck.
We will do more scans after round two.
God Bless all of you ladies. No one should have to go through this. -
Bon...there are threads for Arimidex and other anti-hormonals. Many others have threads specific to a specific treatment - just keep looking - some are not pinned to the top - do a search on the drug and things come up! Hope this helps.
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Since I have been getting a bunch of question about my 'Nail Routine', I made up a really simple 'how to' so here ya go!
For the nails...sterile is key. I get the packaged alcohol pads and simple go around all my nails. With the aid of manicure nail file (the metal type for cleaning under the nails) and sorta wrap the pad on the tip so that I am sure to get the area along side the nails. You don't need to do this until the 'thickening' from the Xeloda leeching starts to 'wrap' around the sides of your nails. It is pretty simple and can be done while watching TV or whatever. Once done, a good slathering of lotion to counter the drying effect of the alcohol and you are done! I polish before I put the lotion on as with the lotion on the nails, the polish does not stay on very well - the first time the wonderful manicure slipped right of my nails it was pretty funny - looked like a set of fake nails since it came off whole! Lesson learned!
It can easily be fit into a busy routine. A nail and foot brush in the shower is really helpful - I just learned that using the pumice side on the feet to help with the potential peeling should be done in one direction inside of a back and forth motion - the back and forth can actually make the peeling worse. Geez, the things you learn...LOL. I also have the little nail brushes at the kitchen and bathroom sinks for hand washing - it keeps the everyday dirt cleaned out pretty well - just be gentle. Cuticles can become sore so a good cuticle cream is really helpful too - I don't use it often since when using lotion, I do pay particular attention to the nail area by massaging the lotion in real good - it makes the area much softer and can potentially prevent the cracking that can occur with Xeloda.
Just to let ya'all know, this works for me. I discussed my routine with my onc and he feels that it is a good routine - says it cannot hurt and by keeping as much bateria under control, it can prevent it from getting under the nail bed which is what causes the nail lifting and possible nail loss from the Xeloda. I ALWAYS run things by my onc before I incorporate anything into my routine.
Hugs my X-Diva Sisters!
LowRider
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Thanks for the detailed routine. I'm getting some tingling on the bottoms of my feet so I guess I need to start thinking that way.
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