Xeloda : Had progression to spine and... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,604 members8,140 posts

Xeloda

Corgi3 profile image
25 Replies

Had progression to spine and hips after 6 months of Ibrance and Letrozole. Got 2nd opinion on what to try next @ Mayo Clinic in Rochester, MN. Will be starting Xeloda next. Am encouraged that this may work for awhile for me. We are going to start with a lower dose and titrate up to limit side effects & find proper dose for me. Feeling hopeful. 🙂❤ Bev

Written by
Corgi3 profile image
Corgi3
To view profiles and participate in discussions please or .
Read more about...
25 Replies
Barbteeth profile image
Barbteeth

Hi BevI started Xeloda November 2020 and struggled with sore feet and tips of fingers so my dose was reduced to 2000 mg a day one week off and one week on

That sorted the hand foot syndrome...however I’m beginning to feel nauseous a lot and not eating much so now I’m taking an antiemetic which has helped enormously

I think just getting the dose to suit is very important and do moan if you feel unwell

I’m curious to know what dose you’re starting on...I was given the highest dose for my body surface area but it was too harsh and the way your oncologist is prescribing seems much more sensible to me

Good luck

Barb xx

Corgi3 profile image
Corgi3 in reply to Barbteeth

I see my local Oncologist Friday. I will let you know my dose. I have a 2nd opinion Oncologist @ Mayo Clinic in Rochester, MN. She suggested starting slow & titrating up to find my "sweet spot" with the new medication. I am really sensitive to medication, so it seems like a good idea to me. Good luck to you! I am hoping for good results. 👍🙂❤ Bev

8576 profile image
8576 in reply to Corgi3

That is a very good idea to start low and increase if needed. My oncologist went the other way. Started high and gave me big problems at 3000 mgs. dosage.

Cheers, June S.

Scandia68 profile image
Scandia68 in reply to Barbteeth

Hi Barbara good to hear your side effects are getting under control. I’m on 1300 xeloda twice per day with very few side effects but my tumour markers are creeping back up. I take it 2 weeks on one week off. Did your oncologist clarify why you are one week on one week off? I’m wondering if this would be a better option for me.

Barbteeth profile image
Barbteeth in reply to Scandia68

Hi thereShe just changed dose and frequency at the same time...I assume it gives your body time to recover after one week’on’...tbh I don’t think it makes a difference as I felt horrid during my week’off’as well

I spoke to her on Tuesday and she won’t reduce the dose but has prescribed a different antiemetic as the one I was taking causes awful constipation which I can do without...my markers had dropped a small amount but she seemed disappointed as expected a larger decrease...that upset me a bit as I was quite pleased they’d dropped at all

Whole things a nightmare

Barb

Xx

Corgi3 profile image
Corgi3 in reply to Barbteeth

Barb,Saw my local Oncologist this afternoon and starting 1000 mg (2x500) in morning and evening 1 week on and 1 week off. How are you doing?

Bev

MyMiracle13 profile image
MyMiracle13

Hi Bev. I started Xeloda in October. Tried 1000 mg daily no week off. Tumor markers continued to rise but at a lower rate so onc adjusted dose to 1500 mg daily still with no week off. Tumor markers dropped 30%. I hope they continue to drop. I prefer starting low and increasing dosage as the side effects are not bad and very bearable. Wish you a long run on Xeloda. Maria

Corgi3 profile image
Corgi3 in reply to MyMiracle13

Thanks, Maria. I am cautiously optimistic & hope we both do well for a long time! ♡Bev

LibraryGeek profile image
LibraryGeek

Good luck with Xeloda, lots of ladies here seem to do very well on it. Hope you are one of them.Jackie x

Corgi3 profile image
Corgi3 in reply to LibraryGeek

Thank you! I'm hoping so as well! :)

ChrisVict profile image
ChrisVict

Hi, I have just completed 1 week of XelodaWas put on because bone Mets went liver.

Affinitor exestamane reduced my bone Mets though. I’m waiting and seeing have moisturized hands and feet. I’m on 2 week on 1 week with 3000. Glad to have the break because I feel side effects coming e.g.

Slight swelling, more mucuos build up, and fatigue. I hope my body adjusts a little to it and markers come down too early.

USIrishcolleen profile image
USIrishcolleen

Bev,

Sending positive thoughts for you!

Best,

Colleen

Corgi3 profile image
Corgi3 in reply to USIrishcolleen

Thank you, Colleen! Sending you positive thoughts as well!♡ Bev

Topood profile image
Topood

I love Xeloda! I hope it is as kind to you as it’s been to me....tumors shrinking, tumor markers slowly declining, and just a little diarrhea (easily controlled with Imodium) and numb cracked finger tips...I have the best energy I’ve had in a long time too. Good luck!

Corgi3 profile image
Corgi3 in reply to Topood

Thanks! So glad it is working for you! I am hoping for good results!

I need to start by saying that I'm allergic to multiple drugs and quite a few other drugs have been tried that just don't work for me. I learned I was allergic to letrozole. And the Ibrance I was taking with it at the time only did the opposite - tumors grew and spread! I was switched to capecitabine - the full dose of 10 pills/day. While it shrank the tumors, it still wasn't good for me at that dose; I had multiple severe reactions to it that put me in the hospital for 9 days. Dose was reduced to 6 pills/day, which did nothing. Now on 8 pills/day, and I'm unsure as to whether it's working or not. No side effects, but lots of pain around the main tumors. Doc may switch me to a weekly IV treatment soon. I can't remember what drug it is.

Corgi3 profile image
Corgi3 in reply to

Hoping they get this all sorted for you soon! Take Care~

BluHydrangea profile image
BluHydrangea

Hi Bev— happy for your 2nd opinion at Mayo. Sounds like a good plan to get going with Xeloda! Hope is a good thing— and I wish you the best with the new treatment!

Corgi3 profile image
Corgi3 in reply to BluHydrangea

Good to hear from you! Hope you are doing well. Please take care!

Pachira profile image
Pachira

I was reading this article in canceractive on Xeloda and they mentioned that turmeric helped. I’ll attach the link in case you’re interested:Chris

canceractive.com/article/ca...

Corgi3 profile image
Corgi3 in reply to Pachira

Thank you, Chris! Good to know! ~Bev

queeneee profile image
queeneee in reply to Pachira

the link for the turmeric article has changed..... it is here... canceractive.com/article/cu...

Pachira profile image
Pachira in reply to queeneee

Thanks I read it again. I’m taking quonol turmeric twice a day, along with a few other supplements. I also started melantonin after reading about it on the cancer active site.

Lna21 profile image
Lna21

Hello Corgi3

Great you are able to get a second opinion from Mayo Clinic.

I am on my third cycle of Xeloda. Started at 3000mg a day (2 first cycles) but hand and foot syndrome was really bad so 3rd cycle is at 2000mg a day. Liver is back to his “normal” size and CA-15 has dropped by 50% after 2 cycles.

So far side effects wise it has been fine except for the hand/foot syndrome.

Best of luck !

Helen

Corgi3 profile image
Corgi3

Helen,I am now on a clinical trial, I had more progression on my May 5th PET Scan in my spine & hips. So am on my 3rd line of treatment in 1 year.

I hope that it works a long time for you. Very encouraging news about you liver & CA-15.

Take care~

Bev

You may also like...

Xeloda

suggestions with my problems with xeloda went to Dr Monday and he put me on lower dose and one...

Xeloda

off, the thought of starting another drug, dealing with the side effects and it may not even work,...

Xeloda

on Ibrance and faslodex for a year and it stopped working for me, my doctor just put me on Xeloda,...

xeloda.

ladies ! I’m going to start xeloda in a couple of days. My mbc has progressed in bones and now a...

Xeloda

loose weight and any side effects and what did you do to help with side effects also did you have...