All about Xeloda
Comments
-
Becs511 I amvery happy for your results, may we all get good prognosis.
Take care
Ziz
0 -
got up this morning and found my normally soft, smooth feet are like sandpaper. Hoping this is not the start of hand feet syndrome. Also my thumb is stiff and locks bent several times a day. I have to use my other hand to straighten it. Ypu can hear and feel it moving. Haven't seen this as a side effect. Anyone else have this problem?
0 -
Hi Patty, yes I have finger locking (not just the thumb) Your feet feeling like sand paper is prolly the start of hand and foot.It sounds like you are doing good other than the SE's.
0 -
Hi Patty,
Yes, that the beginning of HFS and also some cramps of toes or fingers-so much fun! Not!!!!!
I am using the 6% salicylic acid cream which REALLY helps a lot. See if you can get a RX for it now so the symptoms don't get much worse.
Babs
0 -
Patty, I also have finger locking thing ("trigger finger"). With my middle fingers. One side is worse. It started on hormone therapy and I thought it would go away on Xeloda. MO says Xeloda-induced inflammation in hands and feet causes all sorts of stuff, including trigger finger, joint pain, swelling, etc.
My hands and feet look like a disaster (raw, peeling) but the pain is tolerable. Ironically, sometimes the worse they look, the better they feel.
0 -
ouch sounds painful. Def will ask Mo for the script. Thanks
0 -
To all
Sorry I am leaving you all. I guess the good news is no more HFS. Bad news my NED didn't last very long. ( 3 months only). Progression in liver and under arm. Waiting for MO to call me. She's en route to a conference today but I had called to find out scan results earlier and her nurse gave me the preliminary report. This disease really does suck!!!!!
Bab
0 -
oh crap Babs... I had such hopes for you. No words. Just my crushing disappointment.
*susan*
0 -
Babs, I feel crushed about your news. It was working so well! Maybe Afinitor next? Keep us posted on what your next treatment will be
0 -
Thank you Susan and JFL. My MO is thinking either a study or IV chemo next. She's sending me the info on both on Monday. At least I got almost 10 months on Xeloda- it's the longest if all treatments to date! This roller coaster ride bites!!!!
Babs
0 -
Hello, I am starting Xeloda next Saturday. I went off Ibrance and Faslodex 9/9/16. My onc said it's ok to postpone and my reasons are to postpone side effects for a number of reasons. I still work full time and I'm wondering how many others work full time while on this treatment? One of these days I will update my info but basically I was diagnosed ER+ PR+ in 2005 and have exhausted all hormonal and targeted therapies with bone mets to spine, rib and shoulder but fortunately no mets to organs. Also the diarrhea scares me because I am traveling and can't imagine being on a plane or something... I am flying the day I start the treatment. Can anyone tell me if the stomach side effects are as slow as the hand/foot issues? My bone mets started in 2009.
0 -
Hi Debbie. I hope Xeloda helps you for a long, long time. I work full time. You should have no problems. For hand and foot pain, I just avoid certain things, find work arounds (I keep a rubber jar opener in my office to open water bottles, etc, wear comfy shoes - both heels and flats, close my office blinds more often because eyes are sensitive to light) and apply urea 20% cream throughout the day. Not everyone has diarrhea. I have a bit of constipation on this but no diarrhea. Good luck!
0 -
Babs, I am curious about trials your MO will recommend. I review trialoptions a lot but there are so many out there, it is hard to narrow down the field. I hope you land a good one, if your MO goes that route.
0 -
Thank you so much! I stand 8 hours a day. I'm sure hoping I don't have the foot pain. I appreciate your well wishes, and I wish the same for you JFL.
0 -
Deb. Buy sketchers now. They really help a lot. Start using the Urea cream. I work FT pretty long hours and have been fine. My GI dr had me take a probiotic and maybe because of that I never had any stomach issues. I hope X works great for you!
Babs
0 -
Babs, I live in Sketchers!!!! Love them!!! Thank you and I will pick up some Urra cream. I hadn't thought of probiotics but that makes sense. My doc has me eat probiotic yogurt when I'm on antibiotics.
0 -
Has anyone on xeloda NOT experienced the HFS?
0 -
Artiecat....I m not having HFS yet after 5 cycles ....knock on wood...I m taking daily Pyridoxine and using Udder cream. My dose has been 2000mg twice daily and as of last weeks labs and PET CT shown significant improvement
0 -
I've been on Xeloda three years and I do not have HFS. The closest I've come is I have had a couple episodes of sensitive, burning feet, and this summer I got blisters on my little toes while on vacation from trying to keep up with my family walking everywhere in Converse hightops-- huge mistake. Lavender essential oil and buddy taping healed my toe blisters.
I don't know why I've dodged the bullet. I wish I did. My oncologist thinks it has a lot to do with individual biology. I take a supplement called Inflamma-less twice a day religiously and have for several years, so maybe that helps? I don't know. I keep my feet out of water except for quick showers, and I never wear shoes that put pressure on them or cause friction anywhere-- always flats. I wish I could figure out how to help others with it, but I suspect we just all react differently to things.
0 -
Wow, Lulubee! I just read your signature and see you are NED on X in addition to being in it 3 years and counting, and that it is your fourth treatment. Gives others hope who may have already blazed through a few treatments.0
-
Babs, so sorry to hear your news
(. Let us know the next Tx plan. Praying for you.Stilts and lulubee: You are lucky!!
Debi: As far as Xeloda goes, everybody is different. Hopefully, you'll get off easy like Stilts and lulubee. I have pretty bad HFS on my hands (I've had 6 cycles so far), but I use lots of creams. I've found that Topricin (you can get it at Whole Foods) helps my hands as I have the neuropathy issues that can accompany HFS too. My feet look like hell and they itch, but I wear soft socks and put good quality cream on them, too, alternating with virgin coconut oil for hydration and healing. I wear Birkenstocks or tennis shoes with good support. Slathering up your hands and wearing cotton gloves at night can help with healing. Be sure to wear rubber gloves for cleaning and doing dishes, too, or better yet, have someone else do the those chores.
I have had pretty bad diarrhea on Xeloda, but I try to keep it under control by eating bland foods and kefir which has probiotics. The END of the 14 days (I go 14 days on Xeloda and 7 days off) is the worst. I use Imodium only when it gets intolerable. On bad days - if I have to go somewhere - I wear a pair of Depends and keep extras in the car in case I need to change...haven't had to do that so far, knock on wood.
As others have said, everyone's biology is different. I've had a delicate stomach/GI tract for years, so it figures I'd have issues in that department. Wishing you the bestof luck.
Lita
0 -
Debi, forgot to add that my HFS didn't start until I was into my second cycle. So, if you're starting next Saturday, you should be ok for maybe a month or more. To be on the safe side, I'd bring a little bottle of Imodium with you. I checked w/the pharmacist, and he said use the liquid form of Imodium, not the pill form, because it stops the runs faster, and you'll probably only have to take one big swig of it, depending on what you're eating.
Again, think positive. If you've heard of the "nocebo" effect (the opposite of the placebo effect), you can psych yourself into having a bad outcome/SEs on drugs, too. How is your energy doing? I've found that even on pill form chemo, I get a little fatigued, but I get insomnia too even tho I'm wiped out! If you're traveling and need help sleeping, there are things you can take. Some say take a Benadryl, others use Ambien (but I've heard some bad things about Ambien...). You may want to check w/your dr.
Cheers,
Lita
0 -
babs, sorry Xeloda stopped working for you. Hopefully, your next line of defense will be the charm. Keep us posted what your next treatment plan is and how you are doing.
I'm on my second cycle, ending my first week on Xeloda. On my first cycle, I did have some diarrhea on my off week(I'm on two weeks, off one week) My doc had me stop Xeloda for several days before I began my second cycle. I'm getting waves of nausea on my second cycle. My eye lids are red, itchy. That started the second week into my first cycle. Currently on my second cycle, they are worse. I'm been putting Pond's Cold Cream and it helps some. Anyone experiencing that problem?
0 -
Babs...just saw your post..glad for your having 10 months on xeloda...but wishing, hoping, praying for many more on the next regimen!!!
Since my last "cocktail" was Navelbine, I'm asking for suggestions for mouth sores on xeloda. My aunt called today & said her onc is on vacation & her mouth is very sore. I was on acyclovir for mouth sores on Navelbine, but don't know if that's protocol for xeloda (and she'd need a prescription for it anyway). I know magic mouthwash, salt, etc...but any suggestions, please. She's 80 this year & she never complains. She hasn't gotten hfs (knocking on wood!), but now I know what to tell her to get from reading here! Thanks, sisters!!
0 -
Hi, my name is Aurora and I recognize some of you from the bones thread and the Ibrance/faslodex thread. I was on Ibrance/Faslodex for four months and it has failed so I am to start Xeloda in about three weeks after I complete ten treatments of radiation to my left femur and knee. I am reading the thread but if one of you would be so kind to summarize for me the major points of information about Xeloda I would really appreciate it.
Thanks.
0 -
I've been on Xeloda about a year and I have no side effects at all. I am on a low dose though. Scans have been anywhere from NED to stable. I'm triple negative so I'm thankful for so long on X. Wishing everyone well. Oh, btw, I just achieved 5 years.
0 -
Aurora: Here's the lowdown on Xeloda or Madame X as we call her.
You take pills 2 times a day (they often start you on 4 pills in the am and 4 pills in the pm). You want to be sure to take them with food because that's how they get into your system. Try to take the dosages 12 hours apart, but you don't have to be anal about it.
The side effects include NAUSEA, DIARRHEA, MOUTH SORES (inside and outside, around lips), FATIGUE, SOME MUSCLE ACHES (usually mild), and the worst one is HAND/FOOT SYNDROME (HFS). (Please forgive me, this is not an exhaustive list...others on this thread may want to add their 2 cents as well.) Most women don't have the nasty dry heaving and projectile vomiting that often accompanies other forms of IV chemo, so that's a big plus
). Lots of women are able to work while taking this pill form chemo, too.If you arrow up and read other people's posts, some women are extremely lucky and don't get HFS (boy, am I jealous!), and some don't have any problems with their mouths. Everybody is different. Things you want to keep on hand: Imodium for diarrhea, Rx of Zofran (Ondansetron) for nausea (you may need something else if Zofran doesn't work...keep in mind not everyone gets nausea - I manage mine with medical cannabis), some really good hand/foot cream for the HFS (don't use lotion, it's not thick enough and doesn't last as long), white cotton gloves to wear at night after you slather the cream on your hands. Same goes for thick white foot socks to keep your sheets from getting greasy and yucky.
Once again, arrowing up, you'll find other ladies' recommendations on which creams work best. Some use Woodworkers, which you can get at Lowe's or Home Depot. I alternate mine, using Aquaphor, virgin coconut oil, and Gold Bond hand cream (it's not as sticky/greasy, so if you have to go to work, it absorbs well). If the HFS gets really bad, your dr can prescribe something. Other women on this thread swear by urea creams.
Others feel free to chime in....
Hope this helps, Aurora. Good luck with Madame X.
Lita
0 -
Thank you Lita that gives me an idea. I won't start Xeloda for another 3 weeks so that may be why my doctor did not educate me on it but thanks to you I now know what to expect. I'll read up on the thread.
Thanks
Aurora
0 -
Lita, thank you so much for the primer on Madame X! I am a newbie to the Stage IV threads and am just getting back on my feet after hip replacement surgery due to mets, radiation to spine hip and femur mets and starting my second round of X all in the last month. It is hard to read through all of the threads and so I really appreciate your taking the time to write these basics.
Warm blessings to you all,
Kimberly
0 -
WINNING!!!! You Go Girl...5 years is Fabulous!!!
0
