I am starting with Xeloda this week and having read all the posts would br grateful for any advice of creams etc to keep at home in case of any symptoms.
I notice some of you have pineapple for your sore mouths, is this fresh pineapple or juice?
What is the best cream to have for feet and hands problems?
Is it OK to take imodium?
I'm sure the nurse will tell me all this but I do like to be prepared for every eventuality.
I have found these posts so informative, thank you and good luck all you ladies. xxx
Hi m1yu. Ive just finished cycle 3 on Xeloda and the first two cycles I had no side effects at all but on day 3 of this cycle everything kicked in. HFS and Dia and rash. Been told to take week off to get things better and starting 4th cycle next monday. Did you have any problem getting changed to a 7on-7off regime. I have got appt. with onc on friday and Im thinking of asking to change to 7/7 as I have read really good reviews. Which hospital are you being treated at?.
Hi Laura 64. I am also on my last day of the 1st cycle. I have had very few side effects. I have been tired and my eyes are a bit sore. Skin below eyes look as if ive been crying. I am using Aloe Vera and vitamin E cream for hands and feet. This moisturises without leaving everything greasy . If u keep it in the fridge it is even better. Ive been told it is important to keep hands and feet cool. I 'm having T markers done on thursday and I see my onc on Friday 13th. Hope it is not unlucky.(cant be cos i'm having tests done on 5th.)
Keep in touch and we can compare notes.
Big hugs and keep well.
Hope you do not mind if I reply as your story sounds simlar to mine - my cancer progressed while on femera. I was totally despressed when I got the news as you always hope that you'll be on a treatment which will work and do the job of keeping things at bay. Well here I am, just completed 2 cycles of Xeloda and so far so good just starting #3 - I get scanned at the end of the month so we'll know for sure. I wish you sucess with X.
I saw Oncologist last night who told me the cancer has progressed. He has stopped my harmonal treatment (femera) and I will be starting Xeloda on 20th February and I would love to share the journey with you and no problem giving you my email for personal chit chat off line. Still reeling from the shock, which I knew would happen.
Recovered a little today at home with my hubby.
Please let me know how you are and how you are feeling. Sending cyber hugs bit time.
I sure can relate as all of us here can about how the H*ll we got here but here we are and we are all putting one foot in front of the other but it is tough. I guess I just pick myself up and keep going as hard as it is some days. But it is encouraging to see that your markers have reduced so that is a good sign and hope it continues. I share your opinion about not taking any more pills than you have to, I feel the same and try not to take anything more than I have to but in some situations, like when I get heatburn I just have to take something but to date it has not been bad at all. I find that yoga and working out helps me mentally and keeps me focused. I also believe in keeping some of my anger, I think it helps me fight better but I also believe in finding a balance and sense of peace which will also allows me to enjoy life. I am sending you positve and strong vibes to you and all of you who need it - keep the faith and stay strong sisters !!
Hi all. Currently on cycle 3, soooo tired but have a cold which isn't helping. Just wondered - how many of you take Ondansetron - I've been told to take it for the first couple of days then switch to Metoclopramide. Hate the constipation.... Also get terrible heartburn so take regular Omeprazole. Hands & feet all good so far. Tumour markers have reduced after 2 cycles so that's encouraging.
Best wishes to those of you going through tough times with pain etc, it scares me to read about some of your experiences, but the good news is so helpful too. Last June when my secondaries were eventually diagnosed, I thought that was "it", couldn't see Christmas happening let alone my son's wedding (which took place last week and was fabulous!). I find I need to keep making short-term plans, don't have the confidence to look too far ahead. Can't believe some of you guys have gone back to work - I took ill-health retirement, but seem to have lost sight of who I am. Am going to try out the local hospice day-care centre, just can't believe I'm in this situation, lost the plot twice now when I went for some "relaxation". Macmillan nurse came today and is excellent, but she seems determined to get me onto anti-depressants, which I don't want, too many pills to shove down as it is! Should know better maybe (being a nurse/ used to be a nurse...)but I don't think anti-Ds are the answer, they can't take away my secondaries diagnosis so I feel I have every right to feel p***ed off at times! Thanks for being here/there everyone x
How is everyone's week going and how is everyone feeling? Just finished cycle 2 and so far so good - only small issues like heart burn and hot feet.
Hi all hope your all ok and plodding along ok I'm off to hos tomorrow to get 2 nd cycle hope se are as gd to me as first I went for lunch today with oh which was nice but omg it is so cold out today I'm sure it will snow well tc all love Laura x
Hi a f hope y ok off to hos tues for my 2nd cycle sorry uve a sore tongue with norm chemo they say mouthwash gelclaire or maybe give salt water a try there is a chemo thread that as loads of tips might be something on there that's worth a try my onc told me not to use mouthwash as don't really do a lot but don't suffer if it don't settle ring bcn up ask her advice tc Laura
Great to hear all the good news stories on Xeloda! Hope that those with SEs can get them sorted soon. And on that note... I know that sore mouth can be a problem, but has anyone had problems just with their tongue?! Mine feels really sore and a bit swollen, like when you burn it on hot drinks/food, and the centre of it has turned really brown and seems to be getting darker by the day. I've got an antiseptic mouthwash from the onc which I'm using twice a day and I'm eating and drinking lots of pineapple, but it's getting worse. Anybody else had this? Any suggestions about how to calm it down? Today is day 3 of cycle 2, 14 on/7 off. Thanks everyone. Have a great weekend xx
Hi again, gosh all those workouts will really help maintain your bone density, you sound as though you're doing really well! I was encouraged by my Onc and his team to walk and or swim to help maintain my bones as bone mets can, over time, cause the vertebrae to close in on one another which can then lead to problems.
I've been quite lazy over Christmas but now plan to get out and about walking. I try to eat plenty of fruit, veg and always have a couple of spoons of Manuka honey with my breakfast, the 10 or 15+ honey. It really does seem to stop all colds, sore throats in their tracks. Take Care..x
Hi Geewiz and Belinda and the rest of you wonderful gals:
It's really great to hear your success stories as successful as one can be with this disease, Keeping things under control while maitaining a good quality of life and for a long time is my one and only goal. I am courious if you gals have made any life style changes which may of helped or could help? iwork full time, workout at least 5 times a days along with doing yoga, fun volleyball swim and snow shoe. I also have two 9 year twins which keep me bouncing around. I also try to eat right but from time to time fall off that wagon but hey you have to live it up sometimes right? I also see a naturopath and take suppplements - my Naturpath provides me a "deep immune" tonic which I think helps. So life is pretty "normal" for which I am blessed.
Keep the faith ladies and take care
Hi WarriorofHope, I was diagnosed in 2003, (I was in my early 40's) breast cancer and bone mets together after my hip spontaneously fractured. I had an excellent trouble and pain free hip replacement. Then had 18 months of Tamoxifen followed by 3 and a half years of Arimidex. I was switched to chemo, Xeloda, in April 2008 and have been on a continuous 2 weeks on 1 week off cycle ever since and will stay with this chemo until it stops working. Also had one single met to each ovary, which they suspect have been there a while but my latest CT scan has one ovary now showing as normal and the other is now mostly a benign cyst...so Xeloda is continuing to work well.
Have had no bone mets progression on this chemo and I'm pain free.
I also have Ibandronate bisphosphonates.
Hope all here have good results with this chemo! x
You asked how Xeloda was working for me - the answer is very well (I think). I'm just completing my eighth cycle, but the first 6 were in conjunction with Abraxane intravenous chemo. I was scanned just prior to the end of that, and told that my bone mets were in remission. Since then I've carried on with Xeloda alone as a (hopefully long term) maintenance plan, on a reduced dose but taken every day with no breaks. My news is good, but I'm not sure yet how much of that is due to Xeloda and how much to Abraxane, but fingers crossed the Xeloda does its stuff!
Best wishes to all,
Hello Xeloda Divas:
Almost finished my 2nd cyle and all is well.
Nicky: So far I have not noticed any changes in my skin colour but again I have not yet completed 2 cycles so who knows what will happen down to road. Your comment about the pills not being green sure made me chuckle but looking tanned would not be the worse thing to happen LOL
Luara: I do believe that one of the SE is gastro issues - again, maybe reducing your dosage or the frequency may help?? Hope your Ocn can help with that when you see him/her.
M1yu: I do experience some tingling in my feet but very little and only from time to time, again another SE.
Belinda: 4 years !!! How inspiring to hear that you have been on this drug for 4 years and stable- That is where we all want to be. Can I ask you what mets you have and how long you were on the drug when you started to see the improvements ?Long may you run with that!
This is a difficult journey we are on but we are strong and will keep on fighting. Happy weekend to you all and god bless you all!
I've had numbness in my hands on waking up in the morning and I've had cramp in my legs, at first I didn't think anything about it but it's happening much more it would normally.
Has anyone experienced numbness / tingling on Xeloda??
For the last few days, I had quite bad numbness / tingling on my left little finger - it doesn't feel like mine! And it kind of run along the outside of my left arm, too. It feels a bit like I've slept on my arm all night.
From what I've read, sounds like it's related to hand feet syndrome. Just wondering anyone had this.
I'm on my 8th cycle, only just switched to 1 week on 1 week off.
Laura, hi 🙂 I've posted some thoughts on your other thread,
Hi sue thanks v much i will see what he says on tues only tummy probs at moe and only one night of sitting on the loo I'm getting pains mainly in the eve but only after eve meal weird .
The other thing for some real reason I woke at 4 this morn wondering about intercourse no as mentioned anything about this to me do we still practice safe sex as I'm on 2 on 1 off when is it safe to go without protection I'm safe from pregnancy is it the same as norm chemo when is it safe to to the deed as I'm gona be on x for yrs! And my poor hubbie will be pulling he's hair out does anyone know maybe I'll ask weird wat wake us up many thanks Laura
I had very bad diarrhea with stomach cramps on my 1st cycle, I had the dosage reduced because of that and a bad facial skin reaction.
I now stil get stomach cramps and a some diarrhea but much milder, I seem to get them worse on my week off.
As soon as I get a cramp now, I take the warning sign andI go to the toilet. I never leave the house on my week off without getting 2 imoden.
The cramps are awful.
I look tanned and have done since cycle 2.
Look after your feet, my feet were completely normal until cycle 6 now I've got bad slits in my heels and my big toes are bleeding and pussing. They should be better now I've had the nail cut away.
Love Sue xx
Hi all hope u are all doing well I just want to see if anyone else might of had this last eve of tabs I had terrible stomach cramps and a bad belly was on look for hr felt awful and for some strange reason my belly as hurt every eve since I had sim probs on my other chemo but was hoping this wld be dif off to see onc tue so see wat he says tc all Laura
So it does sound like if you can "tweak" the dosage or change how mnay days you take the drug - ti can be more user friendly. Something to check into. Do keep us updated on what your doctors recommend cause if there is a chemo we need to take, hopefully you can stay on this one as it's seems to be less toxic. Geewiz and Mrsblue - how is this drug working for you - are you both getting this disease under control from X?
Take care ladies !
Hi Nicky and all, yes I've had to go for a shade darker foundation.
Also have lots of little moles (have always had lots anyway) and brown spots..heard today I'm still stable..well a bit better than stable, so happy, so relieved. I've been on this chemo for nearly 4 years now. Just so grateful for this long period of stability.
Good Luck to all. x
I have had 5 cycles now and I have definitely found that my SEs have got easier each cycle....Apart from bloods! In fact the last 2 I haven't had to moisturise my feet at all! I do have a major problem with my bloods being affected though, low red cells, white cells and platelets, each time it is one of the above, but they vary..I am going to guess it is red this time as I feel a little breathless!
My treatment has been changed to 10 days on and 11 days off...has anyone else been offered this?
One minor query, has anyone else noticed that their skin colour has changed? I didn't notice it until I looked at some photos taken over Christmas, in some I look quite sallow, almost a beigy/orangey colour! I was worried about jaundice, but my eyes are fine. The oncologist did mention that it can affect skin pigmentation, but that was when I was showing him some strange brown blemishes! perhaps a high dose of peachy tablets will turn me into a peachy colour!! at least the tablets aren't green.
Another option is a reduced dose taken every day - no days off. I am in my sixth week of this, and the side effects seem much more manageable.
"7 days on/7 days off also helps and is just as beneficial
I have also heard that once your body get acustomed to the drug, SE can get better
Blackspot and Laura: Sure hope you both start to feel better soon and hopefully can stay on X as I hear it can do good to keep things at bay and under control - do tell us what you Onc advise. Are you both on 2 weeks on/one week off? I've read that maybe doing to 7 days on/7 days off also helps and is just as benefical. I have also heard that once your body get acustomed to the drug, SE can get better. We all need something that is kind to us and WORKS !!
Hi angelfalls glad y ok yea think most of inf gone always had a bit of a cough so hard to tell really gtg tue so see wat they say my bloods are norm ok think it's harder as time goes on hopefully it will be kind to us gd luck tc Laura
Hello blackspotk - I'm really sorry to hear you're having such a horrible time on Xeloda and hope they come up with a plan for you soon. Fingers crossed whatever that is will be much gentler on you, but REALLY tough on the cancer. That's what we all want to find, isn't it?
Laura - hope you're feeling better today and can enjoy your week off. I probably felt worse on my first day without tablets than at any other point in the cycle (makes sense, really), but felt much better as the week went on. Hope you will, too. Have you got rid of that chest infection now?
Take care everyone xx
Hi blackspotk hi ladies sorry to hear your s e are not gd I'm norm really sicky on chemo I had amend that was v gd I don't know if u can ask about that I'm also tn with lung and node mets maybe you cld ask about a reduction just to see if that will work before they change you is this y first chemo since sec dx I have others but only worked for short time I was doing really well till last night think i spoke to sn I had my last lot of tabs then hr later had terrible stomache cramps was on loo for a hr god never seen so much pxxlol feel ok today but god the pain and cold sweats where terrible glad there are a few new plp to chat to all tc let us no how y doing Laura
Glad most of you are okay. I am not having such a good time...... Basically seem to be intolerant to Xeloda. Got lots of anti sickness tabs and steroids last week but still had to stop taking drug due to severe vomiting. Although some of the anti sickness tabs made me so tired I was semi-conscious!
So, back onc tomorrow for new plan. I have ibc, triple negative with multiple tumours in my lungs, so not sure if a reduced dose will help or if I have to try something else 😞
Lets keep in touch, espcially the us newbies. It helps to know others are in the same boat cause no one trully understands this journey except for those of us who are travelling it. Keep the faith!
Hello again! Glad to hear we're all doing ok. Picked up my second dose today ready to start tomorrow morning. No problems so far, only really mild SEs, so didn't need any tablets other than the X. I've also been told I can stay on it as long as it's working, but don't know whether they'll reduce me to a maintenance dose - still early days for that kind of decision... Have to see whether or not it's working first! My onc said today they'll scan after 3 or 4 cycles. Fingers crossed for all of us xx
Hi w h I'm not on a trial not been offered one but I know what u mean about the timing with the tabs it can be a pain sometimes but if it's working small price to pay I've been told I can stay on it until it stops working maybe it depends on cancer types and what cancer they have I don't really know hope u get gd results tc Laura
Hi Xeloda Divas
Sounds like everyone is "tolerating" this drug not too badly - my thoughts on taking this drug is as long as it's working and doing the job at keeping things at bay, I'll put up with the side affects
and fortunately, they have not been too bad. Because I am on this clinical trial, I need to record the exact time when I take the metformin so I need to manage this, which can be a bit of a pain but keeps me on a routine at taking my pills about the same time everyday or at least during the week. On the weekends, my schedule changes and my times are off but I try to take the pills about the same time everyday. Hope everyone gets good news and a long run with this drug - keep posting with your updates. Cheers
BTW: How long do you ladies need to stay on this drug - in my case I'll be on it for as long as it works but know that some ladies get a "maintenance" dose once things appears to get stable.
Hi everyone. I'm new to Capecitabine too (have extensive bone mets)- just about to start third cycle. Also have Vinorelbine weekly for 2 weeks. Fatigue and nausea have been main side effects,ended up in hospital after first cycle with low neutrophils but had had rads prior to that for cord compresssion, but overall not too bad. Hate taking so many tablets though, mornings can be a bit tricky having to sit up to take Bondronat, then take anti-emetic before breakfast. Tumour markers are coming down so hope that's a good sign - yet I know some Oncologists don't do them as unreliable. Confuses me as stopped Arimidex then Exemestane as markers were rising so told they weren't working.
Good to hear how everyone is doing.
Hi all last day of my first cycle yippee no real se I'm feeling tired today but then I've had a bad cold and chest inf so I'm guessing that as not helped hope y all doing well and welcome to any new comers Laura
Just checking in the see how everyone is making out. Hope you are all doing well with X. So far half way finished my 2nd cycle and doing really well only SD I am experiencing is hot feet and a bit of heartburn but so far so good. I will be anxious to find out how X is doing with my mets but have to wait until the end of Feb. when I get my scans, keeping my fingers crossed. I'm also on a clinical trial- taking metformin( or placebo ) with the Xeloda. Wishing everyone well.
Hi everyone I am today finishing my second round of this chemo been alot better this time,legs swelled up on first lot but got through this second lot with few side effects.As most of you say the tiredness is difficult to cope with especially with children but still much easier to cope with than the fect t I had to endure last year.Its nice to hear from others who are on the treatment thought my chemo days were over - told all ok in august last year - then taken into hospital in November 2011 with suspect gall stones only to be told breast cancer had spread to liver and was inoperable.My initial reaction was not to have treatment having been so ill with fect t last year,however my oncologist persuaded me to try xeloda as she thought it could work well with me and touch wood so far it has made me feel better in myself.many thanks for starting this thread despite wonderful family and friends living with cancer especially
secondary cancer can be very frightening and lonely. yvonne
I'm on my 1st cycle and have just started the week off. I'm also on 4000mg a day, 14 on/7 off. Feeling OK (considering!), just tired - sleeping 12 hours every night!!! Also had sore mouth, but plenty of pineapple and mouthwash soon got that under control.
Sue - I hope the new anti-emetics work their magic for you. It's so miserable to have to deal with that sickness and nausea.
Laura - get well soon and thanks for starting this thread!
Mrs Blue - thanks yet again for sharing all that brilliant information with us newbies!
Warrior - good news on the minimal SEs! Hope that continues and that you get a good result from X.
Jan - thanks for sharing your good news. It gives us newbies confidence and hope. I know what you mean about enjoying the weeks off. I was so excited when I took my last lot of pills for cycle 1 last night!
Nicky - I hope the new schedule will work well for you and give your bloods the recovery time they need. If not, could you try a dose reduction? From what I've read, lots of women seem to have some dose adjustment.
Take care everyone,
I definitely did find the first cycle worse than any others, in fact the last one I had no SEs apart from poor bloods. I posted a few weeks ago about my oncologist wanting me off xeloda, because my bloods delay treatment almost every time. Well I met him again yesterday and he has changed the schedule and will let me have 3 more cycles of Xeloda to see how I get on with 10 days of normal dose 2 X 4150 then have 11 days off to see whether the bloods can repair themselves with 4 extra days. I guess I have to try it to see. He will then scan me to see if xeloda will work sufficiently at this lowered dose.
Wishing everybody an easy xeloda cycle xx
Hello again to all new Xeloda ladies.
I started on Monday, 2000mg twice a day. So far have had constant weeing, nausea and have vomited twice. (not a nice way to lose 4 lb in a day!). Husband has collected stronger anti-emetic drugs fro GP and have withheld my morning drugs. Hopefully be okay for tonights!!!
Good to hear side effects are minimal for most of you. I think I read somewhere that they can be worse the first cycle?
Oh and big thanks to Mrs Blue, brilliant links......
Hi to the new ones I only started last wed at the moe so far so gd no se unf I've gone down with a stinking cold no a great combo with chemo I've lung and node mets kp in touch let us know how u get on tc Laura
Hello Xeloda Ladies
New to this site so thought and new to the drug. Had my first round and will start next round tomorrow after getting checked out. So far this has been an easy chemo to take with not SD to speak off except heartburn and maybe trouble sleeping but tht might have anything to do wit the Xeloda. Hope this works and i can get a long run from. I have mets to bones and liver but with no pain and doingall my activites as normal.