Xeloda

Posted by sue lonie on 11 Sep 2013, 04:28PM

Hi,

Today I started on Xeloda and am worried about side effects. Earlier this year I found I had more metastes in my hip and collar bone. The Oncologist put me on Everolimus and I was unable to tolerate it. I ended up in hospital for 10 days. I would love to hear from other people who are on Xeloda.

Comments

Xeloda

TraceyK's picture

Hi Sue

I've been on Xeloda for a few months now and haven't looked back.  I haven't had any of the side effects so far.  I do have the odd day of feeling blah but they are few and far between.  My Cancer Cell count has dropped drastically and my Oncologist and I are extremely happy with that,  I started using MooGoo Udder Cream straight away in case my feet and hands became red and peeled etc as the information sheet had it as a side effect.  So far so good, no redness or peeling anywhere.  I hope you have as much good luck as me on this drug :)

julia.w's picture

Hi Sue
I was on Xeloda for 14 months and tolerated it really well.it made me a bit tired and I got runny eyes and nose but only the slightest hand and foot syndrome, just a little irritation on a couple of toes. I hope it works well for you.
Julia xx

Xeloda

Smiley Ky's picture

Hi Sue, hope you are doing well.

I was on Xeloda for ten months and tolerated it well. My hands and feet turned really red, sore and began to peel. I highly recommend good foot creams, foot massages, tonnes of slippers and gloves. My hair did thin as well but not too bad. My tumor markers went down dramatically but I stopped Xeloda because I m now on a trial drug. Good luck and wish you all the best xx

Xeloda

BC's picture

Hi Sue, I was on xeloda for about 14 months, my markers went down dramatically as well. Unfortunately my oncologist had to stop it because my feet, arms and legs were so red and painful I could hardly lie in bed or shower as they stung so much. I also got the runs pretty bad. My oncologist decided that I developed a toxicity to it. So I am now back on Iv chemo. Having said all that, I know quite a few ladies on xeloda and apart from some hand and foot syndrome they are tolerating it very well. I hope the same goes for you.
Stay positive
Ps I also found moo goo terrific.

Julie Bache's picture

Hi Sue. I have, too, just started xeloda. Just beginning 2nd cycle. A few minor irratations with feet and fingertips and quite bad dry, cracked and sore bottom lip. Found the moo goo excellent for all these. Also making me quite tired and white cell count down a little. But just have to learn to take it easy!! As I start second cycle I am finding I have irratated, watery eyes. Not sure what to do about this yet!! All in all, quite tolerable so far. Fingers crossed.

Hope you find it tolerable too. Julie. xx  

Xeloda

Kerryn Swain's picture

I've just finished the tablets of 2nd cycle of Zeloda, having ct scan and seeing oncologist end of next week to see if effective.  I too got really sick a few months ago on Everolimus, had a week in hospital.  My feet seem to be fine but my hands are really dry and sensitive.

Amy's picture

Hi Sue

I haven't been on Xeloda (yet).  I think it is one of the next options the onc suggested if my current treatment doesn't work out.  I'm on Everolimus/Exemestane (excuse spelling) at the moment.  I've had bad ulcers but these have cleared up and also has attributed to lymphoedema in my right arms and swelling in my ankles.  What side effects did you experience?  Sorry to hear you ended up in hospital.  This is certainly a rollercoaster ride - a shame we can't opt to get off of it!

Good luck with Xeloda.  I hope you get good results for a long time.

Amy x

Xeloda

sue lonie's picture

Hi Amy,

I had low white, red and platelet count and an ulcer on my tongue, which was disgusting, I couldn't put anything in my mouth without having something to numb the pain. The Onc. had lowered the dosage twice and I still had shocking side effects and my bony count went up, so it was no longer doing anything positive. It took 8 weeks for my blood count to come back to normal.

 

Xeloda

sue lonie's picture

Thanks for all your replies. I have been on it for 8 days now and so far so good, except for diarhea. I had it from the Everolimus and was just getting over it and back it came. I am also seeing a gastroentorologist re diarhea and she has put me on Questran, which seems to be doing the trick.

Xeloda

LINDA WATKINS's picture

Hi Sue, I too have just begun Xeloda, day 10 (for bone & liver mets). Nausea & tiredness are main concerns so far. Not sure I can tolerate it for 14 days then only 7 off? With previous IV chemo would improve after first week at least. Will be checking with oncologist next visit. Will be interested to hear how you go also.
Thanks all,
All the best, Linda

Xeloda

wendy h 67's picture

Hi, Sue,

I am also just starting Xeloda today.  So far so good, but early days yet.  I had a lot of problems with rashes and blisters with the Abraxane IV chemo that i was on previously.  It did settle down and I found the Moo Goo helped.  It was also good for my grand daughters exma.

Wendy 

 

 

 

 

xeloda

Adel's picture

Hi Sue,

I have been on Xeloda since march this year with no side affects. My cancer markers have reduced dramatically so that I am now in the " normal " range. I feel fantastic! So good in fact that I have just returned from 6 months of grey nomading around Australia!

I had regular blood tests along the way, and flew home for a week from Darwin for tests and visits with my doctors.
Not sure if it's just the xeloda or the great time we had, or a combination of both, but this year has been a wonderful experience. Much better than the iv chemo experience.

I wish you all the best with your treatment.

Adel

xeloda

Adel's picture

Hi Sue,

I have been on Xeloda since march this year with no side affects. My cancer markers have reduced dramatically so that I am now in the " normal " range. I feel fantastic! So good in fact that I have just returned from 6 months of grey nomading around Australia!

I had regular blood tests along the way, and flew home for a week from Darwin for tests and visits with my doctors.
Not sure if it's just the xeloda or the great time we had, or a combination of both, but this year has been a wonderful experience. Much better than the iv chemo experience.

I wish you all the best with your treatment.

Adel

Julie Bache's picture

Adel, it is great to hear of your positive experience with xeloda. I had two rounds and was taken off because I needed an op for femur fracture and surgeon was worried it might compromise my recovery. It has been 5 weeks off it now and, while my hands have healed, my right foot is still losing the skin layer. I will be starting up again next week and am hoping to avoid the hand/foot syndrome this time round!! It will also be interesting to see what ground has been lost re attacking cancer cells.Oncologist assurred me he could 'make up lost ground' so here's hoping.

Thanks everyone for sharing your xeloda experiences. It's nice to know I'm not doing this alone. Take care all. Julie. xx

 

wendy h 67's picture

Hi Sue,

I had 3 cycles of Xeloda before the hand & foot problems kicked in.  It felt like I was walking on burning sand.  I had a two weeks  break, saw the oncologist my tumour markers were just starting to come down so I'm back on Xeloda again. So far ok. 

 

Julie Bache's picture

Onc reduced my dosage from 6 tablets daily to 4. So far have had slight burning of feet but nowhere near as bad as previously. I also started using moogoo continually instead of waiting for symptoms. Maybe this helped?? Apart from ocassional tummy upsets (and chronic tiredness, though this is probably post op as well) all's good. Pain in ribs has gone too. Will be very interested in next scan results!

TraceyK's picture

I've been on Xeloda for nearly 6 months (8 tablets a day), and my Cell count is down to "normal" as such.  No activity at all and am hoping this stays the case for a long time to come.  I have had no side effects except from an upset tummy at times and the odd day of diarrahea.  I am having joint pain which could be a combination of having Zometa and Xeloda but have more drugs to counteract this. I am so grateful for Xeloda as it really seems to agree with me.  I feel for those who have suffered side effects.  We just push on with life and stay positive.  I'm finding the positive in everything even the 21kgs I have lost this year.  I reckon I could afford the lost (being overweight to start with) and am actually feeling so much better for it.  I send you all good vibes and together we can fight this disease.

I hope you all have a fantastic Christmas with your families and friends.  Let's hope 2014 brings good news for all of us xxx.

xeloda

beth1118's picture

I took xeloda for 9 mts.  I had mets in my pelvis, ribs and liver.   The mets have shrunk in my pelvis and ribs and are completely GONE in my liver.  Dr took me off xeloda telling me it was to toxic to stay on.  I tried tamoxifen with no luck, femara with no luck then to faslodex shots with no luck.  Back on xeloda now after trying those other drugs and being off xeloda for almost a year.   Been on it for 4 rounds so far, 7 weeks.  after 5 weeks the tumor marker tests showed lower.  

Xeloda

TraceyK's picture

That is excellent news Beth.  I've been on Xeloda for around 7 mths now and my cancer cell count have reduced and shows no activity whatsoever.  Fingers crossed it stays that way.  I haven't suffered too many side effects from this drug and any that I do have are very slight.

xeloda

beth1118's picture

I am so happy for you Tracy!  .  Those are my hopes for my results too.  

TraceyK's picture

Stay positive Beth :)  

Julie Bache's picture

Xeloda still causing me feet and hand problems so dosage reduced to three tablets daily. Also the watery eyes continuing but just been prescribed a cream for that. Vinegar baths recommended for hands and feet. I am happy to put up with these inconveniences if xeloda is destroying the cancer! Always intriguing how these drugs affect us all so differently. Good luck to all those on xeloda.

xeloda

beth1118's picture

I put lotion on my hands and feet constantly.  On my feet before bed, and when I get up I put it on them, and put socks on.  Bag Balm works great too.  Its very greasy, so I only put it on my feet.  Diabetic hand lotion works great on the hands too.  That was what I used the first time through this.  My finger nails split down from the tops, and that is not fun.  

Amy's picture

My nails split from top up too.  Any ideas what we can do to prevent that from happening?

nails splitting

beth1118's picture

I told my dr about the nails splitting, and he told me to soak them in apple cider vinnegar.   I have not tried that yet.

 

Xeloda

TraceyK's picture

Julie & Beth

Have you tried MooGoo Skin Milk Udder Cream yet?  I use it all the time and have heard from many others that it really does work/help with hands and feet.  It is recommended by many Oncolologists.  Some chemist may stock it, if not, they have a website and are located in Tweed Heads.

Julie Bache's picture

Yes, I am going through lots of moo goo! When at home I put heaps on and wear my ' charming' sock things but I have to remember not to use it if going out because my feet slip around in shoes. It is way too hot to be wearing socks out! Fortunately, my local pharmacy sells it. Apparently vinegar baths close pores and protect cracks from becoming infected.

 

julia.w's picture

I was given a little kit by my oncologist when I started Xeloda that had moo goo udder cream with cotton gloves and sockettes

Julie Bache's picture

Me too. I would like to get another couple pair of those sockettes. Does anyone know where you can buy them?

 

TraceyK's picture

Julie,

Try places like the Body Shop or those shops that sell bath stuff (soaps, lotions etc).  I have a  spare pair I can send to you if you would like to email me your address - LeAngel811@hotmail.com :)

xeloda

wendy h 67's picture

I have been on Xeloda since september last year.

I have trouble with burning feet, which have been very painful when walking.

Moo goo cream is soothing, also I've tried paw paw cream.

Last cycle was so bad by the 5th day,   I had to stop for a week.  My Oncologist has reduced the tablets to 4 a day and so far my feet have been fine this cycle.

Had a bone scan the other day, fingers crossed, when I see the oncologist this week it will be better news.

 

julia.w's picture

Good luck Wendy, I hope your scans are good

Xeloda

TraceyK's picture

I've got everything crossed for you Wendy :)  I'm having a bone scan late next week and am positive all will good. Take care.

xeloda

wendy h 67's picture

 

thank you for your well wishes.  Good news, I saw the oncologist today & my tumours are showing reduced activity in all areas. 

my oncologist said that it was better than just being stable, which was what we were hoping for.

I will be staying on xeloda, & put up with the side effects as long as its working.  Iam on a reduce dose now and so far no burning feet.

Thank you to all the pink sisters who wished me well.

Julie Bache's picture

Thanks so much for the offer Tracey. I will check out body shop first and let you know if I will take up your offer. Good luck to all those waiting on scan results. I hope you get the best possible news!! xxx 


sue lonie

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