All about Xeloda
Comments
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I think by the sounds of things I've been very lucky with the hand/foot syndrome!
My hands are slightly red with numb finger tips but me feet are fine....almost normal!
I've been on Xeloda for 7 months now......I wonder why everyone gets such different SE's, it would be very interesting & helpful to understand that.
Oh well, we all soldier on & do what we must....
(((Hugs)))
Karen xxx0 -
Kazzie61 ... from what I understand there are a few who escape the hand/foot issue & that's wonderful. May I ask what dose you are on? 7 months! Awesome! I guess it's a matter of how we each metabolize the med.
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Good evening ladies. I haven't been on for a few days and despite these weird SE's, I am delighted to see the discussion about the swelling. I'm on round two (week on/week off) which I seemed to be breezing through. Yesterday I noticed a little swelling in left foot and ankle. Today, it's moved up to the calf. I've had swelling in the left hand since before the Xeloda but it seemed to get a little worse today. I've got two more days on this round so will wait with baited breath to see if it goes away when I go back on my week off.
Get rid of one thing and four more pop up. You're all right - this is a weird drug!
Sue
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Kazzie61 ... I forgot to mention, regarding the runny nose ... I've had that as well. I'm told allegra or claritan (24hr) helps ... I've tried the allegra and it seems to help. However, this last round it wasn't an issue ... go figure! As far as I know there's no side effects as they are nondrowsy formulas.
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SyrMom......I tried some antihistamines for the runny nose but none of them worked!
Maybe I will try & find Allegra.
My dosage is 2000 in the am & 1500 in the pm, 14/7.
Yes, I do realize I seem to be about the only one without hand/foot syndrome (although as I said I do have mild redness & numbness) & if the scans didn't show it was working I would be a bit skeptical.....obviously you don't need the SE's for the chemo to work!!!
In all honesty my symptoms so far have been so minimal, I could almost forget I'm taking it!!
Runny nose, mild redness of hands, numb fingertips, swollen fingers, pins & needles in my hand during the night, occasional leg cramps in the middle of the night & very occasional nausea....I get very tired from time to time but that could also be from the meds I take. So all in all, I do feel quite lucky......although writing it down makes it sound worse than it is!!!!!
What dosage are you taking & how long have you been on it?
(((Hugs))) to all.
Karen xxx0 -
The dose they wanted me on was 1500 day/evening 14/7; however, could not tolerate with the hand/foot. Reduced to 1150 day/evening, 7/7 & I still get the awful foot syndrome at day 5 on and it doesn't go away until almost ready to begin again!! Just hope it's having an impact on the beast as it's alot of work. Get scanned again in a couple of weeks; don't really feel any different in terms of disease symptoms, so I'm a little nervous, but who knows.
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I have just finished round 14 of X and I have suffered from foot/hand syndrome. I guess that we all respond different as I do not have any problems with my nose running, although my eyes water on some days. I have found though that the SE's have reduced a little and my feet are not as bad as they used to be. I miss being able to walk, however there are different exercises that I could be doing. As for the swelling of the feet and hands, I dont seem to have any problems in that area.
I agree, as long as X keeps on working, then I will persist with the SE's. We are just at the end of winter here, though, so not sure what summer will have in store. I will keep in mind to put my socks in the freezer in future before use.... thank you for that suggestion.
Blessings
Mandy
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Ok - ultrasound showed no clotting and swelling in leg has gone down. Top of foot above ankle still a little swollen and tendeer but tolerable. I am on 1300 day and night 14 on and 7 off. Like SyrMom the HFS just starts going away about the time you have to start the next dosage. But it is working has taken my TM's from 44 to 12 in the last year. some tumours disappeared, some shrunk but no new ones. Glad we can get all this info here from each other - thanks girls
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Great news saskie. I too have the swollen foot/ankle and don't know if/when it will subside. I'm still a ways out from the next scans so I just have to gut it out until then.
Kazzie, I haven't gotten the hand/foot YET so I'm hoping I have success with it as you have. I'm only on round two right now and about to hit my week off - whoo woo!
Everyone seems to be doing well on this stuff despite the SE's.
Blessings, Sue
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Getting ready to jump on the Xeloda train as soon as the meds come in the mail. Hoping it will work because I'm crossing off treatments faster than I'd like and it's making me nervous.
I do plan to read all 109 pages, but in the meantime I was hoping someone could give me a recommendation as to whether there's a particular brand of white cotton sock that you've liked for keeping the foot cream on. (Already ordered the archival gloves and going to get the cream from Home Depot that others have recommended). Trying to heed the advice I've read on here about staying on top of the HFS.
Thanks!!0 -
Hello Everyone!
I was diagnosed Stage IV in 2005 and have been on hormonals up until August 22, 2013. Because of increasing liver mets my doctor put me on my first chemo last month.
I started 4,000 mg of Xeloda August 22. Ten days later I had such burning pain on my soles and palms I phoned Doctor and told her I am stopping Xeloda until our next appointment. Doctor agreed. She said we'll discuss changing my dose at that time.
I'm 5'5" and 115 lbs. I suspected from the beginning that 4,000 mg per day was one heck of a strong dose. It took only ten days to discover that I'm right.
I stopped the Xeloda three days ago and I'm still suffering.
One thing Doctor asked me was am I using lotion on my soles and palms. I told her I think the whole lotion idea is just something to keep the patient busy because the pain comes from within. No amount of lotion is going to prevent or stop the pain of hand/foot syndrome.
Luckily, I guess, the hand/foot problem is my only side effect so far. But being I've only taken Xeloda for ten days and having this side effect show up so strongly doesn't bode well for me, does it?
Sorry to be a downer about Xeloda but I've been wary of starting chemo all along and this certainly is NOT a good first experience.
Kessala
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Xeloda is one of the chemos docs can make adjustments to. I went from 14/7 (8 mos) to 7 and 7 and its been so much better. Same dosage of 1500 in the am and 1500 in the pm. Hope you get a new plan and it works better for you. Try to space your pills 12 hours apart helps too
Linda
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Nan,
I am on the 7/7 dose because I was having bad stomach pain. Hope they reduce the dose and you feel better.0 -
Hi there,
I've been doing well with Xeloda. Some SEs. Every round seems to bring a new SE, but nothing all that bad. The first time was mouth sores, for instance. I always have a swollen left foot. But, things were going well. I got the results of my CT scan and my bones were actually thickening. I was stunned because I'd had increasing pain in my ribs. Then I started this round and I had trouble with the big D. I'm sorry, I don't mean to disgust everyone, but it was bad. Pure water and I couldn't make it to the bathroom on time. Now I'm afraid I'm going to lose my Xeloda and be put on something else. My onc told me to stop taking it for the time being. Has anyone had any experience of this?
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Yes, I actually asked my oncologist today if the Xeloda could make you lactose intolerant because i had the same thing happen about three times in the last month and a half after having either a milkshake or a drink with milk in it. She said she hadn't heard of it from anyone but that it is possible. So i only do the milk stuff on my week off when not putting the Xeloda on the stomach. It could be just a combo of something you ate or drank with your pills.
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I had a similar experience as Saskie, I'm very lactose intolerant on Xeloda, I also find eating heavy meals too late in the evening or really spicy foods to be triggers. I think xeloda makes my digestive system twitchy and it doesn't take much to set it off. However if I'm careful - knowing my triggers - I don't seem to have as much trouble. So now I pay more attention to what I eat instead of just assuming its a direct effect of xeloda. For me it's more a xeloda plus food interaction.
How I'm thinking at this point anyway. May change my mind next cycle 😜
Edited to add that xeloda does not play happy with some of my other drugs (especially metformin). I now make sure it's the only drug I take. I wait several hours before I do other meds.
Sophie0 -
Another thought - I'm trying compression stockings and they're my new best friends. My ankles have returned, my shoes fit!
It doesn't seem to make foot problems worse, in fact they might be doing a little bit better...who knew, granny support hose are a good thing even though they're awful to get on and off.
Sophie0 -
Thanks, Ladies
I never thought about it being a dietary thing. I'll watch what I eat and let my doctor know. I appreciate your help.
Laura
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hi haven't posted here for awhile thought i'd chime in i I've been on x for 16 months i have had some redness and sore feet i use henna on them mostly in the summer i just had an ingrown thumb nail. The big d is either from the x or the tykerb one thing i've found very helpful is grated beet and lemon juice(just a little) got this from my acupuncturist said it was gallbladder. Just started to notice swelling of ankles so far x has kept me stable except for brain mets and nothing really crosses the blod brain barrier that good at least its keeping them little. hope this helps.
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Laura, I got the big D during my 4th round. It seemed that no mater what i ate, it immediately started the run to the bathroom. mine was also like water. In the papers I got from the pharmacy, it said x can cause dehydration, so make sure even if you cut down on food, drink plenty
My Mo cut my dose from 1800/1650 to 1500 x 2. I was given a 2 wk break bc surgery was thought to be an option (not stage IV, but very fast local/regional recurrence). I was told i would need to be off x for 2 wks so wound would heal. PET came back with a new possible neck node involved, so back on X after 2 wks, on round 5. HF syndrome still there, although they are not peeling as much, just bright red and sore. Big D has not returned (yet). If this is working I find it so much easier than typical IV chemo, even with the se's.
Do any of you know of an average of when X stops working? If my node shows involvement, I may have to go back on infusion. Not looking forward to that.
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Sorry guys, I had to come off of X right after the first dose. I was at the hospital twice, deydrated and it alot of pain. Now I'm on Gemzar.
HUGS!
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Today was my first day back on this 7and7 round and I lost my breakfast and coffee shortly after taking the meds. First time ever I actually vomited, usually just nausea that got calmed down with compazine. I'm worried that i didn't have my meds in my stomach enough time to get in my system. I'm also worried that my spine is hurting more than had before and does that mean I've got progression or does it mean the x is working? or is it the xgeva? I'm kind of a mess today. The nausea has gone away though and I'll be taking my next dose tonight. I don't see the MO till the 20th, should I wait or should I call and let her know about the vomiting and the increased pain? I never know if this is just normal SEs or not. Also I slept most of today off and on.
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Isn't it amazing how different these SE's are for everyone? Veggie, so sorry this one didn't work for you. Be encouraged though that there are still lots of options for you and you will find the one that's going to work for you.
Ranger Mom, I've read on these posts the suggestion to take the anti-nausea 1/2 hour before the Xeloda. That's what I have been doing and it's worked for me so far. The compazine didn't work for me but the zofran did. I just started my week on (third week on) today. I actually had a funny stomach yesterday but I also had my xgeva shot on Tuesday so I'm assuming it was the xgeva. A friend of mine also said her onc. told her that if she was able to keep the meds down for at least a 1/2 hour after taking them, you should be okay. If you lose it any sooner than that you likely need to take it over. Although, I'd be hard pressed to take it again if I were sick!
I wouldn't wait for your appointment. Give the doc a call which is what we're supposed to do when a new SE pops up. See how the rest of the weekend goes. It may just be a fluke. With the tiredness, it could also be a flu bug! I've also had more hip pain the last week (which was my week off) in the hip with the bone mets. I hadn't had any pain for awhile. I saw the onc. on Friday and asked her about it. It looks like the Xeloda is just starting to kick in so we're thinking it's the xeloda starting to work. I've had aches and pains in a few other places but nothing that stays around for very long. Let's pray that the X is doing the same for you and you're feeling healing pain!
For those of you having issues with the dairy, I haven't done milk products for several years. I do yogurt which helps the gut (both with constipation and diarrhea) but nothing else. So far so good.
Sophie, great idea on the compression stockings. I'm waiting for our 100 heat to subside before going that route. Cold and snow will be here soon enough so I'm looking forward to seeing if that will work for my swollen foot/ankle.
Hang in there ladies and blessings to you all.
Sue
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Rangermom:
I would call them as soon as possible. They always tell me to call about stuff like that. The 20th is just too long to wait.
Laura
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Hi leftfootforward. I had pink eyrs too and skin under the eye was red. Look as if ive been crying for days. It is due to dry eye syndrome from meds. Get yrself some soothing eye drops and use every 2hrs. Works great for me. Good luck. Keep going girl
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I'm feeling much better today. Nausea has gone away. Thanks for your suggestions.
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Hi ladies. Just starting my 4th day of X and have really been having trouble sleeping at night. This just started when I began taking X. Can't recall if the doc mentioned this as a potential SE...anyone else had it? Does it get better as time goes on and our bodies get used to the drug?
Thx!0 -
Let me start by saying I love this site. Every time I come home confused from my oncologist I can just put something in a search and I have answers to most of my questions. I just saw my doc today after having a liver biopsy last week. I started out last year as stage 3 triple positive, now I have bone and liver mets. They did a biopsy to the spine and were surprised that it came back as only estrogen+, so they had me do a liver biopsy. That came back as estrogen+ with half the cells slightly her2+ and half not. I'm currently getting radiation to the spine so they will be using a shot to shut down my ovaries until I can get them removed. He said they might want to put me on xeloda then, but he wanted to consult with some other oncologists first. At first they were talking about putting me on lots of nasty hard chemos, so if I can get away with xeloda I will be happy. It sounds like some of the side effects really suck, but I would rather xeloda than all the other stuff they were talking about!
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Mary - Sleep has been an issue with me almost every night but I cna't say for sure if its pain that's waking me up or anxiety or something else. That's part of the the reason I went on disability is not sleeping well along with all the other stuff. Sorry
BethCon1 - hang in there, soon you'll have your treatment and whichever it will be, is what is best for you and you'll get through the se's. Yes, x has been good for me after the others I've been on. We are all so different in how our bodies handle these drugs. Its amazing how strong we all are.
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since I can't figure out how to start a new topic, I'll just post here and hope for the best.
Hello all. I just took my first dose of Xeloda this morning and am puzzling over how to keep the schedule straight. I'm to be on a 7/7 schedule, and I do take an antacid tablet every day.
My recent history:
Diagnosed in 2004. ER+, PR-, HER2 Neg. Mastectomy, full axillary dissection (it was a mess in there), AC/T chemo, radiation.
Five years of Femara.
Spring 2012, during a very stressful period of my life, I was diagnosed as stage 4 with mets to bone, and a 30% infiltration of my bone marrow. My oncologist started me on Faslodex. Stable scans until June 2013, and onc. switches me to Aromasin/affinitor/xgeva.
August 2013: started experiencing shortness of breath, which worsened through September and two ER visits in which I could not convince anyone that my low hemoglobin levels required a transfusion. Finally, on Sept. 3rd (my third ER visit), my hemoglobin went low enough to warrant two pints of blood and somebody finally figured out that the "shadow" on my CAT scan was Pneumonitis. Immediately stopped Affinitor and started a step down dose of steroids and inhalers.
Yesterday the onc said that I am never to go back on Affinitor or anything in the family. My scans showed some improvement, but my tumor markers had risen dramatically in the ten days I was off the Affinitor. So now he's started me on Xeloda, which he says has minimal, manageable side effects.
My question for you all is this - has anyone worked out a rational way to keep track of the schedule? When should I take my other vitamins and meds (antidepressant, statin, antacid) ?
And how did you all create those neat signatures with your history?
Fingers crossed for good results with X.
Ronnie from NYC
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