All about Xeloda
Comments
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Goldie. I also reduced my dosage in the am to 3 pills from 4. Just couldn't deal with the hfs issues. I'm hoping it helps!!!! I hope the marijuana helps!!!
Babs
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Hi Babs sorry to hear about how hard was to prepare your special meal. Glad you got some help after the meal in clearing up. These things can be so exhausting when you are on Madame X. Glad my hubby is a great cook so I don't have to do much in the kitchen. I am finding it sore to open bottles and jars due to my sore hands. My oncologist is going to give me a wee break when I go for a holiday in Europe soon - she does not want me on chemo while I'm abroad. Looking forward to the holiday and the break from Xeloda! Think I'm going to stock up on some high factor sun cream as I believe your skin is more sensitive to the sun when you are on chemo. We don't get much sun in Scotland but my face is becoming full freckles now the weather is a bit milder. Can't wait to wear my mirror foam Sketchers sandals - too cold for this in Scotland as yet. Hope you are all doing well. Most of you are over the other side of the pond from me - although you are all so far away from me, I feel closer to you as we are united in going through similar battles living on this drug and dealing with everything metastatic breast cancer brings.
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Let's talk feet. I know, a fairly boring subject for most of the world, but as the temperatures begin to rise, I can't keep wearing my Uggs for comfort. My feet are getting too warm. I could use a little kitchen-table discussion about footwear. During the summer months, before Ibrance and Xeloda, I either went barefoot or wore Birkenstock sandals. Barefoot seems to be contraindicated at this point. Birkenstocks don't have much padding to absorb the shocks of walking. Sneakers are really not an option since I spend the summer months in dresses and I don't actually like sneakers on my feet when it is warm either.
For those of you who have been on this drug for long enough to have experienced warm weather, what do you wear on your feet?
Thoughts?
*susan*
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I love my Ecco sandals. They have several styles and are very comfortable. I recommend the
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Left.... I bought some Ecco sandals on a trip to Washington, DC, when my Birkenstocks fell apart and you are right. They have some nice padding. That might be the answer! Thanks!
*susan*
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Susan, I've had two summers on Xeloda, and where I live, summer days are typically above 100 F, and the heat lasts from May through October. So yeah, I hear you.
I am the gal who used to own an embarrassing number of amazing, awesome shoes. The day I finally mustered up the will to give most of them away was one of the worst days of my post-cancer dx life. But I have to admit, my closet is remarkably less depressing now that I don't have to look at them every day while pining away.
I don't have a great answer, but I'll tell you what works for me and what doesn't.
Birkies are out, sadly. They rub my heels raw. Can't even wear them around the house. Le sigh.
Flip Flops are out if only because of the increased risk of falling, but there are other problems as well. I have a small stash of really cute Yellow Box flip-flops from pre-X days which I love... but the bottoms/insoles are a black rubbery material, and after an hour or so, the soles of my feet are burning, like a chemical burn feeling. I've wondered why, and now after our recent discussions about sweat, I suspect it may be an interaction between toxic sweat and the black sole material.
So... here's what I live in all summer long: Bob's World Cartwheels by Skechers and Tom's Moroccan Crochet Women's Classics. I wear them with everything from shorts to church dresses. They are extremely comfortable and very breezy and cool.
If it's not too hot, I do pretty well in Converse Chuck Taylors. I always love my Skechers GoWalks (as you all know by now!) and I also have some cute canvas Tom's that work really well.
My current experiment is Sanuk Yoga Slings. Going pretty well so far, but then it's not over 90 degrees here yet. We'll see.
I know those of us on Xeloda AND those of us with Swiss cheese skeletons from extensive bone mets are not supposed to wear any kind of heel. And those of us who fit in both categories are totes insane for ever wearing even thinking about it. Right, I get that. BUT... if I know I am only going to be out for a couple of hours, AND only walking from curb to seat, AND my husband is with me, and I want to look a little snazzier than normal... I have a couple pairs of totally hip Kork Ease on reserve. Mind you, I only wear these a few times a year. But they do work and they are surprisingly comfortable.
You could order a pair from Zappo's or somewhere else with free shipping and free returns, and see how you like them.
Hope this helps!
lulubee
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lulu,
Wonderful information. As it happens, I don't do heels. I might have played with them in my 20's, but I found them an unacceptable option when performing, so they have not been part of my life for at least 30 years. I will investigate your other options. I am very willing to spend time figuring out what might work. Though I am a bit cheap [well, my husband uses the word frugal!] That is one of the reasons I do love Zappos.
*susan*
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Hi Susan I haven't done a summer yet but in preparation for good weather, I bought four pairs of Sketchers sandals that feel very comfortable. I've been impressed with my sketchers trainers with mirror foam so I'd give those a try. Alas, we've got snow showers just now in Scotland so no chance to try them yet. Maybe others have? There is a reasonable selection of sandals, even ones with diamanté for wearing at night if you were going for a night out
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Another cycle done! Like last month, the last few days have required long naps. I know the next three days will continue to get worse, but then, my body can begin to heal. When I have more energy again, I can begin my Sandel Quest of 2016!
*susan*
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Congratulations on another cycle down, Susan!
My feet aren't that bad, but I can say I love my Sketchers Bobs! Mine are last season's version of the cartwheels and I'm planning on grabbing another pair before the warm weather really moves in. I like them best with those sock-like liners you can buy (this kind of thing) which smooth out the bumps and don't show at all.
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Okay, now this old Madame X vet needs some help.
My 16yo son and I are 600 miles away from home at a weeklong nationals baseball tournament (which he has dreamed of qualifying for forever, like since he was 6 years old). Been here since Sunday. Naturally, the big tournament totally coincided with an X cycle, but by golly I got on that plane with my boy and came on anyway.
I am now on Day 5 of a cycle...and YEP, the Big D has hit. Thankfully, today is our one day off from tournament play for this entire week, so I am staying in my room most of the day. But I do NOT want to miss tomorrow's game. It's critical, and it's a big moment in my son's life.
SOOO, ladies. What would you do? Would you take something today so you're not dealing with this at the ballpark tomorrow? If so, what?
Or would you let your body keep up its efforts to detox from X and just take your chances?
Maybe I should eat a couple of bananas and some cheese? :-P
(At times like this, I keep reminding myself that this-- being here for my kids and trying to be present for their important life events-- is why I keep taking this stuff.)
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Oh gosh Lulu, I feel your pain. I have messed my pants many a time, thinking it was just gas......NOT! Or it just comes out on it's own, since it's basically like water! Thankfully I was at home and not out anywhere. I think I would try and do something today. Can you get some Imodium AD? I have some here, for "just in case" but I haven't taken any of it. And I do have the big D, daily. How exciting for you son, and that you can be there to share it with him. Good luck to him and his team. Where are you?
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if say take Imodium. And if you have to skip the dose before the game and take the evening dose before bed. That way hopefully you can get through the day. After being on Meds for so long I find I adjust to my schedule. I don't eat meals around times I know don't want to be in bathroom so. And I wear panty liners just in case.
Good luck and good for you for going
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yes all - the Big D (or in my case D's!) is one of the joys of taking Xeloda. I have to travel a lot for work, often on long stretches of roads where there are no toilets apart from the great countryside. My oncologist prescribed Loperamide tablets which she told me take if I felt I was getting the trots. The only problem is they may make you constipated. I must admit I did take a couple before going to a friend's house for dinner as I didn't want to spend the evening in her bathroom making all sorts of lovely fragrances! I think the Loperamide has helped me before the onset of any bowel upsets and I also think taking a daily pro biotic drink has made my tummy and gut a lot more settled. Lulubee, hope you manage at your son's game and hope the experience is everything that you and your son wish for
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Probably too late to chime in Lulu, but I'm w/everybody on the imodium. You've come this far. I sure wouldn't let Big D ruin it. Your system may get jacked up a little bit, but it will eventually get straightened out. Go for those memories!!
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Thanks, everyone! I skipped my morning dose and did fine. The heat and exertion were pretty rough going (I am in bed resting now), but thank goodness no GI emergencies.
Now to get through tomorrow's 2PM game... on DAY 7 of my cycle. I cannot even believe I am doing this. I'm a crazy woman. But... I love my boy and I'm glad I'm here, no matter what.
Just so thankful to be alive for this.
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LuLu you're doing what's most important in life- being there for your child. I haven't had ANY GI issues with X-maybe that's because I take a probiotic daily as per my GI dr.
My hands and feet are quite a mess though. I can't wait to be off for 7 days after tomorrow AM!
Babs0 -
I, too, haven't had any GI issues. I also take daily probiotics and prebiotics, and eat yogurt for breakfast most week days. I wondered if the lack of GI issues was related to probiotic use for me.
Lulu, I hope you can make it through the tournament! Congrats to your son. Very impressive.
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I do take probiotics, eat yogurt, and I make lots of green smoothies that are loaded with goodies for a healthy gut microbiome. (I even pack a separate suitcase for my Vitamix blender when I travel so I can keep up the green smoothies while away from home.) But I still get loosey-goosey around Day 5-6.
This did not happen the first year or so I was on Xeloda, at least not like it does now, so it's been cumulative in my case. I think the gut must get worn out from processing this stuff. We are asking our bodies to work so hard for us!
A little more TMI for you: This is total reversal from the 18 months I was on Afinitor + Aromasin. Constant constipation, hello. That was awful, too! I remember back then, one of the most popular areas of the forum was a thread on constipation! Aren't we a fun crowd??!
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Lulu. So much fun- the kind I wish I could live without!!!
Babs
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Wow, so the side effects keep building after a year into Xeloda?! I had no idea.
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Lulu, I hope you are enjoying yourself, albeit the problems. I agree with you about things getting worse, the longer we are them.
I find on my days off, it doesn't really get better until about 3-4 days into it, and then for the first few days of starting back up. I go for labs today, hate this time. Always on pins and needles until I get results. Which last time TM's went up.
DOES NO ONE ELSE HAVE THIS HORRIBLE ITCHY RASH ALL OVER? IT'S DRIVING ME BATTY! On my arms, chest, legs and back. My skin is beginning to scar from all the scratching. I do take Benadryl, but only at night.
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Lulubee,
You hit the nail on the head with your comment "a healthy gut microbiome". I just wanted to add to that that a healthy microbiome is a well diversified one.
Diarrhea happens because chemotherapy affects some of the microbes in the microbiome. Then in the vacuum left by some microbe population dying out, other microbes take over causing dysbiosis: some microbes are overrepresented and others are almost not there anymore. This results in inadequate absorption of food in the GI tract. Therefore the more diversified the microbiome is the more resilient it will be to chemotherapy attack. Probiotic help, but a well diversified diet helps too. I've learned in some of my readings that eating meat/fish of animals raised with antibiotics is a no-no for microbiome diversification; apparently the antibiotics in the meat/fish is still effective at weakening our own microbiome.
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Bless your heart, Goldie! You sound just miserable! So far, after just finishing round 2, the "itchy" rash is on my chest, upper back, arms, and legs but not too severe. The bright red rash is on my face, hands, and feet. Hands and feet hurt! My gums hurt too! I noticed that yesterday. I already use an Oral B "ultra soft" that I order on amazon!
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Nicci, I had the rash on my face too, but just on my first round, which consisted of 7 pills. I didn't get a sore mouth, but my lips blistered. A year later, and my cycle before this one, I tried to go back on 7 pills, which is what made the rash so bad. So I dropped back down to 6 pill.
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Hi Goldie
No rash for me but bad hand and foot issues-how were your blood tests yesterday?
Babs
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Babs, my results will be ready tomorrow, but I'm leaving Tuesday for Vegas. Seeing Donnie and Marie Tuesday night and then attending a trade show. So I won't log on until I get home. Don't want to find out before I leave, in case TM's go up. I don't want to be all sad and depressed while away.
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Goldie
I get that!! I'm hoping and praying for good results for you! Enjoy Vegas- and remember what happens in Vegas STAYS IN VEGAS!!!!!!
Babs
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Goldie, I hope your blood work results are positive! I have some problems with rashes on chest, back and face. Itches a lot. Benadryl cream helps. I also take daily non-drowsy allergy med (Claritin or Allegra) on Xeloda because I have red eyes and slightly puffy face and eyes. I think it helps with the rashes too.
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JFL, I have some Benadryl gel, it helps but only for a few minutes. Gosh, if I touch it at all, it starts to itch. And I'm scaring, it's scabby. I think I might ask if I could take a month off of Madame X. Altho, it's scary to do that. I do take Benadryl tablet at night. Then every other night I do cannabis oil pill. I sleep really well on those nights!
Babs, there won't be too much going on in Vegas, it's mainly a business trip. Except for the Donnie and Marie show in the evening of the day we get there. Vegas is about a 7 hour drive from where we live. Not a fan of the place, since we have been there so many times for trade shows.
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