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Struggling with xeloda

Kiera49 profile image
20 Replies

Moved from ibrance to Xeloda. I know it's only been 1 week I have been on it but feel sick most of the time and really tired all the time, I hope the cancer is hating as much as I do, I am on 3,000 mg a day which sounds a lot, I know I shouldn't moan as my friend died 4 weeks after diagnosis and at least I can take drugs to buy me time, but cant stay on these for a long time like this, sorry for whinging

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Kiera49 profile image
Kiera49
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20 Replies
barbarac76 profile image
barbarac76

Hi.

The transition to a new treatment can be rough. I had a similar reaction when I started Xeloda. I didn't feel sick with stomach issues, but the fatigue was overwhelming. I know everyone reacts differently, but I'm hoping you experience what I experienced - over time my energy returned (with bouts of fatigue throughout, but manageable).

I also started at 3,000 mg per day. After about 6 months (because of other issues), my oncologist reduced my dose to 2,500 mg per day, which helped a lot. Maybe a reduction is something you could discuss with your oncologist.

What is your cycle? Unlike most cancer centers, my center's protocol is 7 days on, 7 days off. From what I've read on this site, the more common cycle is 14 days on, 7 days off. I know I couldn't tolerate 14 straight days of Xeloda.

The hopeful news is that Xeloda has worked well for me since February 2019 - reduction in liver, stable in bones and lungs. I hope you get some relief from the side effects and that you get a good run with Xeloda.

Barbara

PS I have three kids (young adults) too - a little older than your's - 21, 25, and 26.

Kiera49 profile image
Kiera49 in reply tobarbarac76

Thanks Yes going to ask onc to reduce dose, I am on 2 weeks on 1 week off, but having 2 week break for holiday which I'm glad about

SusieIM profile image
SusieIM

no you are not whining, you are simply sharing how you feel. I took 3,000 mg a day of Xeloda, got pretty sick; they reduced the dosage, now I feel better. Can you ask your doc to consider reducing it some, so you don't feel so crappy? Hang in there, sending a hug.

Kiera49 profile image
Kiera49 in reply toSusieIM

Yes will def be asking for dose reduction

It's ok to whine to the wonderful,ladies on this site. We understand and care. Madlyn

Kiera49 profile image
Kiera49

Thanks

Bubbles001 profile image
Bubbles001

I had the same experience when I started Xeloda. The Onc reduced my dose and I got a whole lot better.

library2019 profile image
library2019

I was on xeloda 3000 a day lasted 10 days was in hospital 4 days with bowel blockage was then changed to adriamycin much better tumor markers going down ct much better hope you do well

Hi Tracey,

You are not whinging; you are suffering from side effects of treatment and are simply expressing yourself. Have you been prescribed any anti-emetic drugs to help with the nausea? I'm not familiar with xeloda, as I have not been on it, but I would let your oncologist know how you are feeling and see whether a reduction in the dose would help combat the side effects without compromising on its effectiveness.

I hope you feel better soon,

Sophie

Kiera49 profile image
Kiera49 in reply to

Thanks had a better day today, still feeling sick but not as much, got domperidone for sickness, she also gave me pyridoxine, for tiredness and mood, hoping my body will cope with it better especially if it works

in reply toKiera49

Hi Tracey,

I’m glad you are feeling better and that you have been given drugs to cope with the sickness and tiredness. Hopefully your body will soon adjust and you will feel even better.

Sophie 💐

Francesca10 profile image
Francesca10

Definitely talk to your dr about reducing dose. I couldn’t tolerate xeloda.

Frances

RLN-overcomer profile image
RLN-overcomer

Sister/warrior I am so sorry you are having such a hard time with the side effects of the drugs you are being given. I hope/pray your Dr.'s will find a better combo of drugs that won't have these debilitating side effects. Whine, and ventilate if you need to . This is the place to do it. We have all been where you are, or are going through what you are going through, and clearly understand. I pray for God to give you comfort, and strength. I send you hugs from afar.

Kiera49 profile image
Kiera49

I felt really good on ibrance shame it stopped working hopefully will get used to xeloda will have to wait and see

Scandia68 profile image
Scandia68 in reply toKiera49

I have also just started on it after Ibrance stopped working and just finished my second week. Exactly 4 hours after the morning dose I get intense stomachache pains. I take one metoclopramide tablet and it goes away. I had no problems with Ibrance and this is a completely different feeling. Hang in there and ask for a lower dose. I’m on 2600mg per day.

Kiera49 profile image
Kiera49 in reply toScandia68

It was just sickness for me and felt thirsty the whole time

Have-faith profile image
Have-faith

Hi. Your not whining...just sharing how you feel. We all understand.

I just finished my third cycle of xeloda. Today is my second day off of it. I take it 2 weeks on, one week off. I had my dosage dropped by a pill for this last cycle. I take 7 pills now, not 8 as my onc did not like the way I was reacting to it. I had been outside for 10 minutes with my pup. From elbows down I had pink marks and alot of discoloration. Sun sensitivity due to xeloda so beware. My fingers and feet were acting up - skin very tight making it everything feel like a razor when I touch it. By the 14th day of this last cycle I was glad to get a break, but my symptoms were much better. I am also covering up if I go out, staying in the shade if I can. Fatigue is still an issue. My onc said we wont know for 3 or more cycles if this working. Did your onc say anything about this? I hope you feel better. Faith

Kiera49 profile image
Kiera49

My biggest issue is feeling sick although this has improved today, I have weakness too but no other symptoms, my onc said I will have a scan in 3 months, so will see if it's working then, let's hope Colin cancer isnt liking drug either, I'm having two weeks off as told her I didnt want to be on it on my holiday, I am on it two weeks on 1 week off, take 6 x 500mg tablets. Does fatigue improve on week off, thanks for the warning about the sun. Thank you so much for replying and for your help. Tracey

Have-faith profile image
Have-faith in reply toKiera49

Everything improves during week off! By the 7th day off I am feeling almost normal and then have to go back on! It is amazing how quickly I can feel the tightness in my fingers when I start the meds again. Fatigue is an issue though. How are you doing now as it has been a week since you put this post up. Are you on holiday? Faith

Kiera49 profile image
Kiera49

I started my week off weds, go on holiday on 17th told her I'm not being on it on my holiday, so will have 3 weeks off. I know it's quite a long time but not being I'll on my holiday, fatigue went quite quick went into town yesterday

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