All about Xeloda
Comments
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Thankyou leftfootforward, for tips on Xeloda. I have only just started on it and any information on caring for myself, especially HFS is greatly appreciated. My onc makes it sound relatively easy to take compared to Iv chemo, and thinks I should manage ok, but he makes lots of thing s sound ok till you try them.
Has anyone tried nutritional supplements that are supportive and help with SE for HFS
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Hi All : This is my week off of my 4th cycle. After 1 month of Xeloda my tumor marker has gone down from 438 to 359. The palms of my hands looks like I'm a car mechanic. My feet hasn't bothered me yet .Nausea has been slight. I eat fresh pineapple and I take probiotic enzyme tablets with every meal. I keep my feet lotioned when I think about it, once or twice a week. Looks like Xeloda is working for now.
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Mscal02,
Glad it's working. My suggestion is to start doing something more proactive for your hands, because strong HFS may be ground for Xeloda (capecitabine) being discontinued, and especially since it's working for you, you don't want that to happen.
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Thanks gcriani: 'I've been keeping them lotioned.0 -
My tumour markers have been climbing the last few times so I'm having a bone scan on Monday to see if anything is getting worse.
My hands aren't too bad at the mo due to lots of moisturiser- same goes for my feet (apart from a couple of splits on one big toe due to putting too much pressure there) I find Burts Bees coconut foot cream is good.
The fatigue is what I dislike the most tho. I'm hoping I can stay on xeloda tho as its relatively easy
Hope everyone else is going well.
kt
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Oh my poor feet. AGAIN during my off week I forgot to use the cream. Like Peter Paul and Mary said, when will I ever learn? So for a few days I used aloe vera (straight from the plant). I put on the aloe vera, waited about 15 minutes and then used the cream (which has Dead Sea minerals). So it took just 3 days for things to get better - a little pink but felt nothing. Then today I went to Ikea with friends - that was THREE HOURS of walking. Not a good idea. Back to the garden for another piece of aloe vera.
So I had the blood test and TMs are still rising drastically. Onc wants a CT and it was scheduled for the 22nd. I have a Bar Mitzvah that morning so I changed it, and the earliest they could give me was the 4th of Feb. I emailed the onc and told him I'd changed it because I wasn't letting this disease sideline my life. Fortunately, he didn't see the delay as a problem (I'm staying on Xeloda until we have the results). So no answers for a while. I decided I'm just not going to think about it. What good would stressing about it do?
LALALALALALA
Leah
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xeloda has worked wonders for me. TM went from 180 down to 70 in 3 cycles. SE are not my friends. I use Avenno every day. Morning and night on feet and probably ten times a day for the hands. Day 12-14 is absolute hell in terms of nausea and vomiting. The onc has given me dissolvable zofran tablets and they help but I get really dizzy when I use them. It works but the se are getting to me. Any suggestions?
Thanks
Maureen
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Wow! Lots of info on this topic! I'm so glad I came here. From what I've read HFS is the hardest side effect. I'm already dealing with the nausea and bowel issues from Taxotere so I have drugs on hand for that. I've also gotten neuropathy...I'm a type 1 diabetic and Taxol gave me neuropathy the first go around and the Taxotere has brought it back. Have any of you had to deal with HFS and neuropathy together? I start the Xeloda on Tuesday and also get my 5th cycle of Taxotere. A little apprehensive but this seems like a very safe community to come to for help. Thanks much!
Blessings,
~Mtmom
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Just checking in. You are all very strong women. I just finished my 3rd 7 day cycle. No HFS, mostly nausea and unrelenting fatigue. Something's up with my digestives tract right now too. I don't feel well. I haven't been out to do anything. I know this is easier than many of the others, but I am having a hard time. I want to DO things and this chemo is taking me down just enough that I'm not doing anything! I guess I need proof that it's extending my life. And then I start questioning whether I want an extended life that consists of most days laying around watching tv, movies, and reading because I dont feel well enough fo anything else. Sorry to be a downer here. I'm at that low point. Day 8 of the cycle and I've had the same pajamas on for 2 days and that's because I finally showered after wearing the same sweats for 3 days. How do you keep yourself motivated to do this?
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Just thought I'd check in with you guys. I started Xeloda in June, with TMs in the 600s. Just got back from the Onc's yesterday, and the TMs are 29. He checks every 4 weeks, and for the past several checks they have been in the under 40 range.
I had been having some new hip creakiness, so I'd thought that maybe Xeloda was losing its effectiveness. Onc assures me that my TMs are very diagnostic (some aren't), and that winter can be tough on bones. I know that to be true, as I can tell when the thermometer dips below 0 Fahrenheit without even getting out of bed to check.
My worst side effects have been nausea. Normally, I take Zofran, and that is very effective. I don't like the constipating side effect, so I tried taking Zyprexa at night (a psychotropic drug that has good results with nausea). It works very well, but made me so hungry that I ate like it was my job and gained 10 pounds. I'm obese already, so that was not a good outcome. I recommend it for those who have lost their appetite.
I have some minor hand/foot redness and peeling. The hands are the worst, as I pick at the peeling patches, making them sore. I've been wearing band-aids on my fingers to keep them safe. It's a good look.
If I wear anything other than my beloved birkinstocks for walking, the soles of my feet get red and hot. But, I can walk up to 3 miles at a go in good shoes with no harmful result.Usually, at this point in a protocol, my TMs have already started rising, so I'm quite happy that they are not. Yippee for Xeloda. For anyone not willing to wade through my signature history, I bombed out on Tamoxifen, got a year out of Taxol, got another year out of Faslodex, and from that moved on to Xeloda. Hurray for cancer whack-a-mole.
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Nice, BlainJ! Need to hear that. I'm still in bed today, too tired to do anything. I'm having stomach cramping. Maybe from constipation, who knows. Anyway, Looking forward to a little break and feeling better. Taking a 4 day trip to Cabo with my kids next week and I was wondering about a few things. I was told no manicures, pedicures or time in the sun. No fun...this is Mexico! I need cute toes and would love to get at least a little sun. Any experience on these things? So far no sign of hfs after 3 cycles.
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hello ladies,
I am new to this forum, I am starting X tomorrow, I am scared. Wondering what to expect? I am ready for the HFS I guess, lol. Fatigue? Dang, I don't like being tired. Has anyone else had multiple node involvement ? That is what I have and a super small spot on left lung and my primary tumor which is dead from rads on my sternum..... Any advice or help would be appreciated. Thank you all so much!! Kate
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Hi Kate. I'm a bit of a newbie on the X too, started middle of December. So far, no HFS for me. Lots of fatigue. Nausea. I would plan to take the anti nausea meds. Also, be easy on yourself and allows Orem time for rest. Hope this works for you and doesnt cause too many SEs.
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Hi kate1974,
My wife had about 10 metastasis locations; before starting X (Capecitabine), one year ago, they had also found a new spot on the lungs, and she felt like she was not going to make it. After X, things started improving, her came back, she started exercising every day again. The mets seem on hold, and the spot in the lungs is not showing as much as before. As far as fatigue goes, she needs more sleep: if she's forced to sleep less, or if some worry wakes her up during the night, then the next day she's in bad shape and feels under the weather. But if she goes to bed earlier she recovers promptly. She kept working full time throughout the whole period.
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Hi Kate : I've been on Xeloda since November, I get at least 8 hrs. sleep on my week on and 9 hrs.my week off. My schedule is 7 days 1500 mg my week on twice daily and 7 days off. I haven't had much nausea, I try to eat lots of fresh pineapple with my meals and a probiotic enzyme.The palms of my hands are turning dark. My feet aren't bothering me. My tumor markers are dropping .The rise in my tumor markers is the reason I decided to try Xeloda. I did get a script from my doctor to help me sleep at night .
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hi Gcriani and Mscal. Thank you for the information. Your wife and me sound similar even as far as dates for dx. I will do the same as you Mscal. 7 on 7 off 1500 twice a day. I am not working so I am able to get the rest I need! Thank you all again, I took my first dose this morning, so far so good!
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Anyone else lose their fingerprints? Mine are smoothing out! My kids figured I can start a new career in, um, banking now but then reconsidered - they figure I'd fall asleep before the getaway car came.
PET/CT on Weds. TMs are climbing quickly and they're usually a good indicator for me so I'm not expecting good news.
HFS is not a problem as long as I don't walk too much. Thing is, I like to walk and used to do it a lot. So sometimes I do, anyway and then deal with the resultant HFS. We all have to decide what we want to give up and what we're willing to tolerate if we don't.
Leah
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Hi Leah. My fingerprints have virtually disappeared. Someone recently mentioned an episode of CSI where in the story there was a body with no fingerprints- turned out it wasn't a criminal, but someone on X for cancer!
I know mine have trouble with touch screens, on my ipad or ph my touch often doesn't work...frustrating.
My tumour markers are going up too- not hugely, but they were 165 when I started X & now they're at 333. I had a bone scan, but nothing new showed up.
I hope your scan comes back ok. Tho it is nice to know why things are happening...
I know what you mean about walking- I love it but it doesn't love me at the moment. I'm trying to help my son prepare for a school camp where he'll be tramping & camping on a rugged island for 5 days/nights, but can't manage much more than 1 1/2 hours.
But other than that & fatigue (& occasional constipation & nausea) this chemo seems to be doable- just need to know its working!
kt
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leah and kt,
i'm a BIG walker too. not looking forward to having an interruption in that part of my life but will just have to deal. are there any things that you do, special footwear... tips/tricks that you do to help you keep walking?
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Hi kaydee,
I have no magic formula for dealing with it
Just wear thick soft socks & good comfy shoes/boots. And pace myself- don't go hard out- too tired to anyway
Hope you can keep it up
kt
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I have been on Xeloda since October. What seems to help me the most is Aloe Vera gel. Doesn't seem to make a difference if it is directly from the plant or bottled. I put it on my feet and hands as needed and every nite before bed.
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Kate1974- Hoping you do well on this new drug for you. My old MO was ready to start this one last year but when my CT was improved he changed his mind and said wait for 6 months. Tomorow I see a new MO ( did not feel the trust in him ) so hoping for a good evaluation. TMs not done since 2013 pre RADS on a sub clavicle node and a spot on lung. I have had neuropathy since 2006 ACT chemo so am really not wanting new chemo. So keeping my weight down and praying for the best. Hugs to you.
LeahS- I lost my finger prints after chemo 2006.They did return a couple of years later. It took about that long to grow out the ridges in my fingernails too.
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JudsonGirl,
I would be interested if you or anybody else has tried both uridine and aloe vera, and could compare the benefits of both.
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PET/CT was today. The scans themselves are, for me, not so hard - it's the waiting for results that takes its toll. It was pretty funny today with the scan. I had my port accessed and blood tests done beforehand (always get blood test in "off" week) and then went for the scan. They didn't want to use my port but I said, it's port or feet. I have LE in one arm and am at risk in the other (BMX). I hate needles in my feet so I showed them my foot with HFS (isn't it good that I did a lot of walking?) and said, it hurts to walk, needle in the foot is painful, whine whine whine. The techs weren't sure but called the doc to decide. She looked at the port, checked the length of the tube, asked of onco dept was also removing the needle, thought a bit and then said OK. Yes, she also saw my foot. What's interesting is that it's practically nonexistent in my left foot but red in my right. Yes, of course I showed them my right foot. It's now in my file in the PET/CT dept that my port may be used.
Leah
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Big whiner baby here. I'm looking for some encouragement. I'm doing a 2 week on/ 1 week off cycle. This one is my first cycle. The nausea and fatigue are awful. Then I hear today that onc is changing dose for the next cycle. If I understand correctly from other posts I'm not on that much med. Now I do 2000mg/day and he wants to go to 3000mg/day. Between this, Faslodex, and taxotere, some days it feels like more than I can do. Is it worth waiting to see how the SE are going to play out w/Xeloda? Encouragement, please??
Blessings,
~Mtmom
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Hey MtMom - you're not being a whiner baby at all! I'm on the same (Xeloda) protocol as you and am on the week off; the nauseau/heartburn has been much more than I thought it would be. This is my first cycle too, so not sure if the next one will be easier or worse? Guess I'll find out next week. I'm only on 1800mgs a day too, and nothing's been said about increasing the dose. What are you taking for the nausea? I find Pramin helps but wears off in about 4 hours, and you're only meant to take 3 per day.
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Hi Blondedoris! I'm sorry you are having similar SE, but I'm glad I'm not alone. The heartburn is amazing after I take the pills! For a couple of days I couldn't get out of bed...soooo tired...and I tried to lay down after I took them...bad idea! For the nausea I've been taking Compazine and Zofran, alternating them so I get more time between the two. They both give me headaches but I've been on hydrocodone for the pain in my neck and shoulders from the lymph node tumors so that helps with the headaches. I'll have to ask about Pramin...I've not been offered that yet. Thanks! I'll be anxious to hear how your week off goes. Would you mind sharing when you are done with this week?
Blessings,
~Mtmom
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I've been taking 2,000 mg per day of Xeloda two weeks on/one week off since August, 2013. I've had two PET/CT scans since starting Xeloda, both scans show the drug has eliminated my liver mets. My bone mets showed two areas of mild progression. I'm delighted with these results!I have bad hand/foot syndrome though. Despite using multiple lotions and potions on my palms and soles they're beet red and feel like second degree burns at all times. Well, let's be honest, they ARE burns. Chemical burns. I told nurse they're a 6 or a 7 on the pain scale.
This past month instead of taking just one Off week I took two. I simply told nurse that's what I'm doing so she would add it to my medical chart. This wasn't discussed with the doctor. It's totally my idea and I made my own decision.
I've finished my two week Xeloda break. My palms and soles are still red with rough and peeling skin but the pain is pretty much gone. I feel like a new woman!
As long as I'm getting good results from Xeloda I won't hesitate to throw in a second Off week once in a while as I need it. After all, it's about quality of life at this point, right?
Kessala
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Hi Ladies, Ive been on Xeloda since August of 2012, taken a couple of breaks, when blood work was to low. My hands have taken a beating, and every kind of cream, has been tried, just have to keep applying it several times a day. this month, my right foot is on fire, and can hardly put any weight on it, as it hurts to much, I need to find a cream that has a numbing effect, gel pads help a bit. Anyway I started in Dec. with two weeks on and two weeks off, so far it seems to be working, and it gives my hands and feet a chance to heal, with the two weeks off. My onc. always asks me, if I want another prescription, or I want to take a break, my concern is what happens when you take a break, I see her on Wed., I guess its time to ask her, what happens when you take a break and markers go up again, I never know if she is saying it is time to quit, or have you had enough, what a choice, end the treatment, then what let it happen. I guess its up to us, but it would help to have a bit of encouragement.
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I can suggest to JustJudi and Kessala to try uridine cream. If some of you have tried it after I wrote about it in the past, I'd like to her your feedback.
After a couple of months of Xeloda she had to take a break from it because of the extremely serious HFS side effect. We then started preparing uridine cream and using it regularly in the morning and in the evening: the side effects became marginal and not bothersome anymore. I've posted the research on it in this thread, and written the recipe for those of you who want to try it. According to the literature I've gathered it's much more effective than other palliatives tried by other members.
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