All about Xeloda
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3 months and no HFS yet. However, I have had gout a few times. Dr. Thinks there is correlation.
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congrats on 5 yr. anniversary. Hope you continue to have great reports for many years to come
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Taking a quick Xeloda poll here: How are people's CUMULATIVE SE's doing?
I'm on day 5 of my OFF WEEK (I'm on cycle 6), and I've noticed that my hands have hardly improved at all...still red, burning, itchy and tingly. When I go to bed, they actually throb, even tho I slather them w/lots of high-quality cream and put on gloves to sleep. It's keeping me awake
(. DH is doing dishes and cleaning kitchen and bathroom counters, so the only time my hands get wet is when I wash them after using the toilet and before I touch any food or eat. Also, I haven't been eating anything that would really irritate my digestive tract (even tho it's my "off" week), and I'm STILL getting cramps, stomach discomfort and my old buddy, Mr. Diarrhea. It's weird...my first BM of the day (sorry to go into so much detail, but I know some of you are probably in the same sinking boat) will usually be okay, then the subsequent ones get progressively softer, turning into diarrhea. It really sucks. So I end up bringing a tote w/Depends in the car w/me even during my off week! I'm trying to be "normal" on my off week, and it seems that persistent Xeloda SEs won't let me.
I'm assuming that it's going to take longer and longer to clear Madame X out of my system as I continue w/this Tx for more cycles.
I just went out and got some Vitamin B6, and am going to start taking it everyday as it's supposed to help w/carpal tunnel-like neuropathy issues which I'm having.
So how's everyone else doing?
Lita
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Hi all, I am writing this with a bottle of Madame X sitting next to me. Doc just prescribed it. I am having a really 'mental' issue getting started on this one.
I am 8+ years with mets. I have done the Taxol (3x), Taxotere (1x), and almost all of the hormonals, Just jumping off falsodex. Still on Herceptin, prejeta. I did do Tykerb (two years ago) had the lovely effect of diarrhea. So bad that I had a few accidents. So the thought of starting another med that causes this gives me pause.
I have read through some of your posts, Lita, thanks for the summary list. HFS worries me because I like to do crafts (cards and scrapbooking).
I am also coming off rod replacement due to a femur fracture, no cancer but a side effect from Zometa! It was a rough summer and I just now am on the mend 'getting' back to normal and Doc throws this curve ball at me. I didn't have major progression, but a few spots grew and my tumor markers rose slightly.
Cancer can be harder mentally than it is physical. I need to regroup and get my strength back. Wrap my head around my new 'normal to come'
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Good luck to you ladies that are just getting started with Madame X. I almost made it 2 years with X, but my SE's were getting so bad. I have been off for about 2 months now. My eyes are permanently damaged, I can not go outside without sun glasses, even if it's cloudy out. It took a good month or more to get rid of the rash on my legs, arms, back and chest. Not to mention the H/F syndrome. My nails have lifted, I'm having a tough time getting them to grow normally. I didn't realize the shape I was in, until I quit. I have a much better QOL now.
Lori
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Fitz,
Xeloda has been easier than I thought it would be, but you are right, there are side effects. (It is harder than Faslodex which you just ended.) I think I read elsewhere that you are only getting 2 pills/2x per day. That is a fairly low dose, so your chances of HFS is smaller than for some of us. For me, my hands have been much less affected than my feet. I am careful to wear socks that don't move, at all. My Mom bought me some seamless, hikers socks at vast expense and I have not had a blister [bad bad bad] since. For me, friction is the trigger for really bad HFS. The rest of the time, my feet simply burn and tingle.
The other tip I would have is, don't skimp on breakfast before taking the Xeloda. I need protein in order to avoid nausea. I have one bout of diarrhea after the drugs hit my stomach, but then it is done and I can get to my day. One of our members had a great phrase "Don't take a banana to do an omelette's job!" I love that quote and murmur it to myself when I am tempted to get lazy about making a breakfast.
Hope MadameX is kind to you.
*susan*
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aurora. Hello I know you from bone mets thread. Hoping X is as kind to you as it has been for me
Fitz. Also hoping the same for you. X has given me some mouth sores but the magic mouthwash has helped. I've been on it since July and am happy to say I feel better then I have in three years. I've been up and doing things I haven't do r in a long long time. Finally feeling like I am not only going to live but that I am going to enjoy living !!!! Haven't had any scans yet but no doubt to me it's working. I've had debilitating back and hip every day all day even with very strong pain meds. The hip pain is completly gone and ghe back pain is greatly diminished. Hopd you have as positive response as I have had
That being said , I am back in the hospital. Treating me for sepsis. Felt awesome on wed then took a nap. Woke up feeling horrible and it got worse from there. Since I have had this numerous times in three years. I know the X is not the problem.
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babs. Sorry to hear of your progression. Glad to hear your mo has a good idea on a new tx. Hoping it works a long time for you.
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Oh Patty....sorry you're back in the hospital...but I think you've had a good run staying out of that place lately!!! Fitz...wishing you low (or no!) ses on X and the CURE for us all before long!!! I have appreciated getting X tips for my aunt's mouth sores. When I got my mets dx in 2012 my onc wanted me to go on X with Navelbine. Ins denied X...thiugh I was upset at the time, I'm thinking that was a lucky break! As nasty as it sounds...it better keep nasty cells away
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Hi Fitz!
I've been on Xeloda for 2 years come December and side effects are minimal. Red hands and feet but nothing bad enough to not do the things I want to. Guess I've been lucky in any side effects have been very mild. Hope the same for you.
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Patty sorry you ended up in the hospital but glad it's not the X which is working so well for you!!!!
I start the CMF chemo on Thursday! A bit nervous but glad there is a plan in place
Babs
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babs. Glad you have a plan in place and sound good. Best of luck too you
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Fitz: You are right. Cancer can really play a head trip on you.
Wanted to add that X can be bad for some people, but everyone reacts differently to it. I've hardly had any mouth problems, just a little redness and scaling around the outside corners of my mouth. So in that respect, I'm lucky.
Of course it's no fun, by my diarrhea is manageable. I'm NOT letting it keep me from going places and doing things. If I have a far appointment somewhere and think I might run into trouble with our old pal, I just take a swig of Imodium to keep Mr. D at bay and wear a pair of Depends to help w/any "accidents." And that's exactly what I'm going to do next week when I have to drive up to a "Preparation for Death and Dying" seminar. Naturally, I'll eat light, relatively fiber-free meals the day before to keep me from having to entertain Mr. D so often, too.
As I may have posted before, after a few cycles of X, you get the hang of what you can and cannot eat. Yes, the SEs do tend to get a little more severe after numerous cycles, but Xeloda has been very good to so many women. PattyPepper is a living testimony to that. She's felt better than she has in THREE years thanks to X.
What I'm a little apprehensive about is Aromatase Inhibitors (AIs). Okay, I lied...I'm VERY apprehensive about 'em. I hear they cause fatigue, joint and muscle pain AND diarrhea. Sheesh, I already have plenty of pain with the bone mets and degenerative arthritis in my spine. My MO only wants me to be on X for six months, and then she says she'll switch me to AIs (which will probably be in December). I'll either ask her to keep me on X for a little longer (depending on the next scan results) or take a break during the holidays. I do NOT want to be dealing w/joint pain and a whole new set of SEs at that time.
Basically, don't be afraid to try something new, Fitz, especially if it might give you several more months. At least you won't lose your hair or be dry heaving and puking all day long. You can always switch to something else if X's SEs become intolerable for you, or you can just STOP taking any treatments, period. They can't force you to do anything.
Best of luck,
Lita
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Hi, all. This is my first time posting, although I have been monitoring this thread for months. I have been on Xeloda since May 2016, and like so many of us, have been experiencing HFS. Two things that have helped are icing my feet several times a day in addition to using O'Keefe's Working Hands and discontinuing all supplements with folic acid. Eliminating folic acid made a HUGE difference for me. All the best.
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Dear cmh531,
Welcome to the BCO community and thank you for sharing your story and tips. We hope you will stay connected here. We would love to hear more from you. The Mods
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Oh, Susan-- that "Don't send a banana to do an omelette's job" comment was ME. I said that after throwing up at church. A smushed banana coated in Xeloda dust is one of the more wretched things I've ever experienced!
FITZ! Hey! I haven't bumped into you on the boards in a while! Good to see another old-timer. I was just reminiscing last night about several old friends from long ago here on the boards-- Marybe, Zoe/Livingit, Sharon/Lowrider, cmhartley, naniam, and so many more-- and thinking that I am one of the few people here who would still remember them all. So yeah, it's good to see an "old" name here tonight. As far as Xeloda goes, I would just say don't fear it until you know how you're going to do. I have a day each cycle where I stay near the bathroom (seems like it usually hits around day 4 or so), but I haven't had an accident (did on Femara, though!). My facial skin is sensitive and reactive, and I do have pretty bad fatigue. I can't lose weight for anything, it seems, which is a real bummer. But I feel like as long as I don't have locked up joints, nausea, or constant headaches, I can deal.
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Lulubee, sorry you can't lose any weight either...me too! Weight loss has totally stalled. I've actually gained back a couple of pounds...boo!!
Losing some more weight would take some pressure off my joints. Sadly, I hear women gain weight on AIS, too. MO will probably put me on those after X. Oh, the joy.......
Lita
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lulu,
Since I have been "here" two years longer than you, in fact, I remember all of those women. Plus so many more.... Sobering.
*susan*
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Oh yes, Susan, I knew you had been here at least as long as I have. I remembered you from way back when, and it was comforting to me when you popped up here on this thread late last winter. I took a break from BCO after all those dear ones were gone, and I had a hard time coming back because I supposed there would be nobody here who knew me anymore. I remember being comforted to see that your ladybug was still around.
As Shakespeare said, "We few, we lucky few..." I wonder what might have happened for all those beautiful women if Xeloda had come out of research in time for them to try it.
All the more reason why, especially during this pinked-out month, we metsters must do what we can to advocate for RESEARCH donations rather than awareness...
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Lita, I hear you. I have been fasting from all sugar and limiting simple carbs for five weeks now, and I have not lost one pound. Some of the other (healthy) gals who are doing this fast with me have dropped two pants sizes, despite not exercising at all. Drives me nuts. I had a really trim waistline until I had my ovaries out six years ago (because I was off the charts ER+), and my middle has been rising like a bowl of bread dough ever since. Ho ho ho, Merry Christmas, pass me the Santa suit.
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it's so inspiring to see you long termers posting. Thanks I can't imagine how many bco ladies you mourned the loss of. In my short not even three years I've seen and mourned the loss of many. Several that I have gotten very close to with texts and calls. Thought about leaving several times to protect my heart but I am glad I haven't. I hope one day to look back and realize I be been here 6-7 years like you ladies. Hoping that all of our advocating for research not awareness has seen our losses get rarer and rarer. Can't help but to think we are getting closer to a cure
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Just got my latest pet/ct report and everything is good. No organs involved and bone mets are all improving and no new bone mets. Yeah for Madame X.
I take about 1/2 of the dosage indicated but it seems to be enough. No side effects at all (due to half dose I suppose). Five years since diagnosis.
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Great news winning. Do the happy dance!!!
Bab
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YAY, winning! That is fantastic news!
I have a PET coming up on Thursday, my first scan in two years. Yep, I'm a little nervous. I will have to stay busy this week.
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WOOHOO for WINNING....fabulous news!!!
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happy dance for winning. Hip hip hooray
Lulu best of luck on. scans. Waiting sucks no if and or buts
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Great news Winning!
Well crap, I was hoping X would produce some weight loss. Is there any BC drug where we lose weight? GESH!! (kidding here).
LuLubee, I do remember you. I miss a lot of the gals here, 8 years I have seen so many come and go.
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I wish they made a bc tx that we would lose weight on : besides weight loss thru vomiting
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Winning, Congratulations on the great news. I have my pet in a few days. Nerves have set in. I hate the weight gain I have had over the last 8 years. It has all gone to my stomach.
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It's really weird...my weight is redistributing itself. My thighs have gotten thinner, but my gut is bigger. I wonder if some of this is just age related and not necessarily Xeloda related?
Also, with all the pain I'm in from bone mets, etc., I don't feel much like exercising. I really need to at least lift some dumb bells because my arms are getting really flabby, and I know I've lost some muscle in the last six months since Dx.
Sigh....as I said, I've heard AI's are even worse for weight loss
.Lita
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