I’ve been on Xeloda now since the beginning of November and had the dose reduced to 1000 mg twice a day due to my sore feet...these have improved but my hands are peeling a bit but manageable
I take the tablets one week on one week off and have just finished a week off...I thought I would have felt better in the week off but I’ve felt really dreadful...exhausted all the time and feeling nauseous
I saw my oncologist today and I was about to start moaning about my side effects when she informed me that my markers have fallen by 500 points which is excellent
She told me she has some patients on this drug for 1-2 years...the thought of putting up with vile side effects for a long time fills me with dread
I sound really ungrateful and sulky but I’m struggling at the moment...do any of you ladies on Xeloda find any improvement in side effects after time or do I just have to put up and shut up
I’ve just ordered an exercise bike as I have no energy so wary of walking too far...I’m miserable as well because I used to be fit and strong when I was riding 4-5 times a weak...at present I doubt I could lift my saddle...I’m just fed up and now we’re in tier 4 I can’t even use the swimming pool
Any tips for nausea?
Sorry for moaning
Barb xx
Written by
Barbteeth
To view profiles and participate in discussions please or .
Hi Barb, I'm sorry your having bad side effects, I 've no experience to offer any advice, but send you good wishes and I've no doubt some of the Fab ladies on here will have some ideas for you. Kind regards
Sorry you are feeling rubbish on Xeloda Barb ...I do hope the side effects lessen with time , but glad your markers have dropped significantly. Most of the country is now in tier 4 and the sudden arrival of winter , so I think an exercise bike is a good idea . I bought one online in November and love it ... its a DKN RB-4i recumbent and has a wide seat and back like a chair ...I even put a couple of cushions on it and watch tv / go on my iPad whilst pedalling ...not quite the same as being outdoors but every bit of exercise helps ! x
I am sorry to hear about your side effects but so happy to hear your markets are down. I finish my first 2 weeks on Xeloda (3000 mg) tomorrow and off a week. I am fed up with the side effects too. Tomorrow I start my Xgeva injections monthly. My cancer has now spread to right lung (now in both lungs), 8th rib and right hip. I am so fatigued, it takes me hours to get going in the morning. I thought maybe on my off week I would feel better guess I will see.It's cold here supposed to start snowing and with all this covid crap I have been feeling depressed.
I know Robin. The covid issue causes a depression. I feel like a prisoner in my home.We in Connecticut have rising numbers and people are being told to stay home. I'm listening...but most people aren't. Hence, that's why the US is in such dire straits!
3000mg a day is tough talk to your doctor about lowering it from what I have read on here what some physicians say it can work just as well🤷♀️ It’s worth discussing with doctor hope you feel better soon.
Hi Barb. I am on Xeloda too. My side effect was diarrhea which then turned into unsettled stomach but now no more. So your side effect might lessen then go away too. Congratulations on your lower tumor markers! Nice news for the new year😄
Well done on the reduction of tumour markers and I hope the dude effects reduce. I've been doing online exercise classes. Yesterday I did ballet Pilates and gentle toning and each week I do a dance class. And they're very sociable, we've all got to know each other and have a chat before we start!
Thanks BerylI’ll investigate...that’s the one thing I miss...used to do 2 yoga classes a week..swim and ride my horses 4-5 times a week and walk...although I’ve not gained weight my body is horrible...no muscle tone and I hate it
I ordered an exercise bike from Amazon to start getting leg strength back otherwise I’ll just feel less energy and then it becomes a viscous circle and depression sets in
Hi Barb. Sorry to hear Xeloda is giving such a hard time. I did not stay on it long and it was 9 months ago so have limited experience on managing side effects and it is all a bit of blur with all other treatments... Sorry not to be helpful . With regards to nausea what are you on at the moment? I am swapping between domperidone and ondenanstron and find it helps alleviate the symptoms . At the hospital one of the therapists also made me a thym and ginger aromatherapy stick that I smell when I feel nauseous and it is unexpectedly quite efficient...It is difficult to balance the burden of side effects and the possible benefits of those drugs in slowing progression... I think we all have days where we feel we just just want to stop it ....In those cases I try to look at signs to keep me going ( not necessarily spiritual, I am not a believer , but just something from the universe to keep you going)... The markers is one for you... You were feeling down and this just arrived to help you make a decision... But either way what is important is to keep reviewing how you feel emotionally or physically... Signs or no signs being able to keep going for as long as possible is the end goal... Everyone is cursing 2020 and off course it has brought challenges but the way I see it is that it is another year We can wave good bye to. We are still standing and every day is a victory...
It will depend on what you had before and any secondary you have ( I have bone and liver) ... for me Xeloda was my 4th line of treatment ( after Ibrance-letrozole /affinitor-everolimus and faslodex) and was followed by Chemo IV ( taxol) . I am now on clinical trial called Tropic 2 as 6th line of treatment...
Just want to interject here and congratulate you and thank you for taking part in a trial that might benefit us all! Wonderful. Please let us know how it goes when you are finished.
Hi I am now in the same position. Xeloda is working for the most part but not enough as a few mets and the liver is flaring . We are talking about upping the dose of xeloda ( did you try this?) or going on to taxol. I’m worried it will just make me weak. I would have liked to try Ibrance again as I know it can work after having a break, but here in the Uk they wing allow you to have it twice due to the cost.
Hi Barb: Moan away. We don't mind on here as we can relate! I haven't started Xeloda yet. Just trying one last ditch effort with Ibrance/Faslodex. One thing I think helps me a lot with the meds is Pantoprazole (40mg.) once a day. It protects the stomach and helps with nausea.It apparently helps with mood swings also. I don't have mood swings but I figure it can't hurt given the problems we have. It controls the nausea for me.
Don't be sorry for moaning - you are allowed to! Of course you feel miserable with those side effects but great news about the markers coming down and maybe the side-effects will decrease in time - as seems to have happened with other women here. Not got anything useful to offer, myself, sorry, but do want to send you a hug. Hang in there xx
Hang in there Barb , Did the oncologist / support nurse have any suggestions for coping with the side effects ? Are you presently prescribed anything for the nausea ? The drop in your markers is great but it would be nice if it was achieved in a more gentle on you manner. I find sometimes my side effects are taken seriously at my clinic visits and other times brushed aside . I sometimes think I am being a whimp but then remind myself WHY suffer with discomfort if I don’t have to . There is no hero badge at the end for suffering , if their is a solution I want it . Quality vs quantity, besides if I feel miserable no one is going to want to be around me and I need people in my life .
I hope the nausea subsides and you regain your strength .
Tumor markers are down that’s fantastic this buys you time! I was just reading for those of us who used up hormonal and have limited chemo that they have started immunotherapy trials for Er+Her2-! Stay the course because I think better treatments are around the corner.
I also read from a one of the research Doctors that it would take 2 years. I know everything with a grain of salt but it is something to believe in. We made it to 2021 Happy New Year!
When I was taking 5 pills twice a day, the side effects from that high of a dose put me in the hospital for about 1 1/2 weeks. The good part was that my breast tumor was reduced from 10 cm to 4.5 cm. The side effects were trying to kill me, though! Constant diarrhea, electrolytes dangerously low, etc. Hand/foot was so bad I couldn't grasp anything - not a door knob, not the toothpaste cap - nothing. Doc reduced the dosage to 3 pills twice a day. I'm almost done with week 1/round 2 of that dose. Unfortunately, I'm experiencing a lot of pain in my left underarm and have noticed that that particular tumor has gotten larger. The breast tumor is bigger, too, but isn't as painful. I have been off all my pain meds for over a month, but will need to resume taking one of them (Lyrica) soon. Lyrica is the only one that helps the pain and still allows me to function without falling asleep throughout the day.
Hi thereMy oncologist reminded me yesterday that Xeloda may be in pill form but it’s still chemo and the side effects are still as toxic..only bonus is my hair hasn’t fallen out (yet) I know that’s a minor thing but still important
Wow. I have been on Xeloda since last spring. I have diarrhea every day. I had stomach surgery two years ago because the cancer closed the opening between my stomach and intestines. The doctor saved my life. He put a hole in my stomach as a reroute to my intestines. Since then I have bowel issues. I am dehydrated and drink coconut water, orange juice, and V8. The coconut water has potassium and I was low on this.
I sit on a heating pad most of the time.
I take two of each: opioids, Tylenol 650, Imodium and dicomine after my bathroom episodes,
They take time to kick in. I have Medical marijuana but it makes me dizzy.
I see a pain specialist and have had two pain blocks that didn’t work.
This is a great forum to share ideas and get our frustrations out.
Maybe the pharmaceutical companies can prioritize a cancer vaccine like the Covid vaccine.
I am glad I like to knit. I have made over 30 headband winter hats while recovering from my bathroom issues.
So sisters, keep trying new pain meds and we continue to share them here. Thanks again happy new year.
So sorry for your side effects, but with your numbers going down, sounds like it is working.I hope the longer you take Xeloda the side effects will lessen.
I have been on Xeloda since May 2020. I started two weeks on and a week off on 1500 mg twice a day. I was hospitalized in June for 6 days for dehydration. Then I switched to the 1000 mg twice a day in July.
I had a hand a foot issue. I use Udder cream in the morning and night. Got it from Amazon. I bought 100?% white cotton socks. I put the Udder cream on at night then the socks. I usually take the socks off sometime in the middle of the night. But it works.
I get my blood tests on my week off and have been pleased with the results. I hope they continue to go down. My 2729 cancer numbers were 118 two weeks ago and I am waiting for this week’s results.
I am fatigued and take my vitamins. Eat lots of protein especially eggs.
Hi Renee Thanks for advice...I bought some plastic overshoes and put my socks over those and it stops udder cream soaking into the socks...I do shove them off during the night sometimes though!
I’ll try to eat more protein as I pick at cereal and other carbs which I guess don’t supply as much energy
It’s tough but if markers continue to decrease then it’s worth it...hate feeling like an old bag though!
Lol you just made me laugh with your comment “ feeling like an old bag “ . Sorry that chuckle was at your expense , but it sounded very familiar to me . 😀
Hi Barb I’m on exact same dose now love the off week maybe it’s just the build up of meds from before you decreased I wasn’t on it very long maybe a month from what I remember before I had it decreased because I was too sick and dehydrated. I know he said he will eventually increase again but I’m going to avoid that as long as possible. Hopefully you will start feeling better 🥰
I’m on Xeloda too, and have been for about the same amount of time, but I’m having much better luck...I don’t know why...my fingers are cracking and I had a lot of diarrhea, but now I take an Immodium every morning and that seems to control it. I was taking an anti-nausea for a while, but haven’t needed it lately. One thing that IS different, now that I think about it, is that I’m on Remeron to increase my appetite ...at first I had to force myself to eat! Now I have an almost normal appetite AND it is helping me sleep much better than I had been....maybe this drug is something you could suggest to your oncologist...with it I’ve been sleeping up to 11 hours a day, which I think may be beneficial. When I was working I was getting up at 5:30, so getting up at 9 seems so luxurious! I think the exercise bike is a great idea....I just rode mine this morning, but have been walking 2 miles or so everyday, which I think may also help....of course you have to have the energy to do it, and I know that isn’t always there....I had a couple of weeks in October when I had to rest to get up the stairs to my bedroom! I hope any or all of this helps...I am so sorry that this medicine has been so challenging for you....please keep us in the loop.
Hi Barb, sorry for what you are going through. I used to get a big slump in the middle of the week off which I found puzzling as you expect to feel great however it is your body trying to cope with the build up. I have a very sensitive system and have always had the lowest dose of any drugs. When I described my slump to my onc she put me on one day on and one day off with no break but at the lowest dose of one tablet morning and one at night. This took away the highs and lows. If you can manage the exercise try to do as much as you can and build on it slowly as it will help your fatigue. All the best.
At the low dose have you had any of the hand food syndrome?Today my doc just lowered my dose to 1 tablet in the morning and 2 in the evening to see if the hand foot syndrome will improve.
My CA27-29 has been coming down each month at 2 tabs twice a day with 1 week on then 1 week off so we want to get the most out of it. I feel in about 2 more months my marker should be in the normal range unless my lowered dose is to low.
I’m going to mention this one day on/off to my oncologist...might help me...she said dose could be lowered more but didn’t seem keen Just bought an exercise bike to strengthen my legs as I live in a hilly area and I’m starting to struggle on the hills
Had a shiatsu massage this morning...the centre is at the bottom of the hill from my house so I had to walk back but I was determined not to drive and just managed
Barb with the exercise, I used to (in the good old days) be able to run and play sport so I have had to relearn different ways to exercise and build strength. I have had an exercise physiologist at my home to show me different ways to build strength through hand weights, my exercise bike, and I have one of those blow up exercise balls. I also try to do some yoga everyday as it has some strength poses and lovely relaxing stretching. She now only visits every now and then when I feel ready to up my game a bit or if I feel I have gone off track. Keep those muscles moving
Hi thereNot easy though!... all I want to do is ride my horse and I just don’t feel strong or confident...he’s a strong horse and would ‘pick up’ on my mood if I wasn’t confident and behave naughty
I’d started back swimming but now the pools are shut so can’t even do that
I ought to go back to yoga...I used to do two classes a week before lockdown so I can do this at home which I did do at home for a while...just lost my enthusiasm and now I’m too weak
Be kind to yourself and take it one step at a time and keeping it achievable - maybe just start by walking a little way down the hill - even 10 metres and walking back and increasing it over time I think consistency is the key. Maybe put your goal of riding again up where you can see it to keep inspiring yourself. xxx
I’m on 4000mg (2000mg twice a day) two weeks on and one week off. I’m just starting my week off of my second cycle. I’m due bloods and seeing my Oncologist on Thursday. I will have no idea on how well Xeloda is working until I have my next scans as my new Oncologist does not measure tumour markers .....
On the whole I feel OK, I just get very tired and I get a sore mouth towards the end of the two weeks & my palms of my hands are dry and flaky but not painful.
I definitely feel less tired on my week off.
I am overweight and my dose has been capped.
I just hope and pray Xeloda is working having faced two lots of progression in the last six months. Xeloda is my third line of treatment.
I’m suffering from a headache at the moment but that’s probably because I drank a little too much last night .... it was New Year’s Eve.
I’m so hoping COVID is controlled with the vaccine and I can travel again very soon whilst I still feel well enough.
Hi JoWow you’re on a high dose...I’m on half that one week off one week on...my feet are ok but hands are sore...I wear surgical gloves at night over the udder cream ( so sexy!... joke!) but the cream then stays on
I have an appointment for my Covid vaccination in a few weeks so that’s a start...not enough supplies yet!
Can’t remember when my next scans are so I’m not sure how the treatment is working...it’s my fourth line of treatment...some only lasted a few months so I need something that works for me but I’m not hopeful...it’s the first time I’ve thought like that
Hope you get good scans...my oncologist had a few patients on this drug for 1-2 years!
Firstly, I have chicken news .... Bubble & Squeak are definitely hens and have just started laying 🥚 🐓👍❤️ I’m so pleased.
I’m also unsure how well Xeloda is working and I’m waiting for my scan date.
I’ve lost a bit of confidence too, as I’ve had liver progression twice in the last six months firstly on palbociclib and then on the trial med. It’s also frustrating not having tumour markers measured... It’s unlike me, as I’m usual so positive. I don’t think Covid and lockdown helps .....
I’m fortunate that my side effects are minimal, just tiredness. I’ve so fortunate that I’ve never been in any pain aside from when I fractured my humerus when the MBC was first discovered.
I’m on a high dose as I’m overweight.
I hope my scan shows Xeloda is working ... I’m not sure of what other treatment options are left for me in the UK and fear it may be IV chemo,
Hi JoAwww bubble and squeak...how exciting...one of my daughters chickens has learned to fly and flew into next doors garden today...she’s just let them have a little run round then locks them in due to the avian flu but Sarah (the chicken!) is the adventurous one...anyway all was well
Vanessa said they laid some weird eggs at first but all normal now...the main thing is they’re delicious!!
I had liver progression and new spots on my adrenal gland and pancreas but as my markers dropped I’m hoping that means they may have shrunk...wishful thinking...I’ve not had a good scan for a year really apart from a slight improvement when I was on faslodex but then everything went wrong
I struggle with pain but I’ve found the fentanyl patches quite effective as I can carry on with my day without thinking of my next pill constantly....I can just take an occasional top up tablet for breakthrough pain
Where I go for my treatments there’s a support team who do mindfulness and other stuff so I’m going to give it a go...it’s not my scene but I’ve been down in the dumps and my oncologist suggested it as I was tearful at my last appointment...first one tomorrow
She did say that several patients are feeling glum and she reckons it’s a combination of the illness/treatments/cold dark days/ Covid...it’s no wonder when you think....mbc is bad enough
I take so much codeine I can’t even have a drink!! And I love a g&t or a nice beer ☹️
Back to chickens....my friend had a chicken who used to tap on the door with her beak when she’d laid an egg...how cute
I’m jealous of the g&t.... my oncologist said I can have alcohol with Xeloda...it’s the codeine!When my daughter got married I stopped the codeine on her wedding day and drank ...really great to get tipsy!!..also the alcohol dulled the pain so I could dance...I had just some paracetamol and ibuprofen though!!
Barb, I hear good news in your results but I sure can understand why you are feeling less than happy. Nausea is a horrific feeling. I am not sure what will help you but maybe you could try drinking ginger tea. The recipe is easy - just grate a chunk of fresh ginger into hot water (between 160 and 180 degrees F. Boiling might destroy the active components in the tea. Make a pot of this tea and sip it all day.
Or maybe just making tea using a ginger tea bag might work too. Perhaps even drinking ginger ale.
And/or you could try lying flat on the floor on a yoga mat with no pillow. When we lie flat we activate killer cells that help us to heal. I read this once - just wish I kept the article. Anyway, if you are tired just lying their in the prone position and picturing yourself healing might help you feel better. It is a form of meditation if you use this down time to picture your drugs healing you and your bodies natural mechanisms working.
Resting when you are tired is never a bad thing. The massive drop in your tumor markers is really good news - I think. Thank you, your honesty is good for all of us. We all go through the ups and downs with this illness and knowing we are not alone is a real blessing. HAPPY NEW YEAR to you and your family. I think 2021 will be a really good year with lots of positive changes. Hang in there. Hugs Marlene
Hi Sandra; Well, I was prescribed it by a very wise oncologist when I couldn't eat or drink because of nausea that wouldn't go away. I could barely tolerate broth. I have never had GERD or been diagnosed with it. It happened after I was put on a medication when I was first diagnosed, that made me sick. Don't know the name of it now. At least that is when the nausea started and I had to be hospitalized to get it settled down. I just kept taking Pantaprazole and was put on another medication. I think that was Letrozole.
You also might have your doc order some Compazine tabs for the nausea along with some Zofran. They had me get these before I started my Xeloda. So far I haven't had to use very many tabs. I do feel your pain.Except for the letrozole in the beginning Xeloda has worked the best for me except for the hand foot syndrome.
I wish you the best in 2021 and that your doc will work closer with you to get you on the right drugs at the right dose to improve your quality of life.
Hi Barb: Just thinking about you again as I am starting on Xeloda. I do hope you feel better at the lower dose. Some people have said chemo infusion is far easier to tolerate. Although i think it still saps the energy. Wishing you well and that the exercise bike helps. Please let us know.
I asked about this and she fobbed me off saying I would still have side effects and it wouldn’t work I’ve read that it does work at 500 mg dose twice daily but I didn’t want to argue as she’s the consultant
I think they’re wary of trying anything new or controversial in case of litigation
Hi, You can try Vitamin B12 or B complex along with Zinc to aid in nerve repair. Use a good prebiotic to help gut biome, drink water that is infused with lemon or limes. Just squeeze some fresh juice into the water and drink. This has helped me greatly with the side effects of Xeloda.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Xeloda
Billirubin level higher on Xeloda?
xeloda or nothing?
interesting Xeloda trial
Xeloda
