Helpful hints starting Xeloda

[Boogitymom]

After 5 1/2 years success with Ibrance, only 9 months of success with Faslodex. Starting on Xeloda on a few days, any helpful hints and what to expect would be appreciated.

[NPmary]

I met someone in a support group who has been on Xeloda for 10+ years. I wish you the best ❤

[AutumnLove in reply to NPmary]

Thats so promising! I wonder if its possible to have decently long runs on each medication.

[NPmary in reply to AutumnLove]

Recent research shows that first line treatment with lbrance and letrozole overall survival for the median (average number disregarding outliers is 63.9 months) - you have already out done that! You can certainly be hopeful. Wish you the best. ❤

[Boogitymom in reply to NPmary]

When diagnosed de novo, my doctor told me prognosis of 5 years was good, 7 years would be excellent and 10 years would be a miracle. I’m shooting to be a miracle 😀

[NPmary in reply to Boogitymom]

May it be so and more ❤

[Georgiamjb]

I’ve been on Xeloda for almost 3 months and am tolerating it pretty well. I was told to use lotion on my hands and feet daily and it’s helped prevent hand foot syndrome. Otherwise just the normal pesky side effects. But it’s has worked quickly for me and I’m happy with the results. Good luck- Sending you a hug!

[Boogitymom in reply to Georgiamjb]

Pharmacist told me to start with lotions before starting Xeloda. I’m very happy that you’ve had such quick results, I’m looking for the same.

[Bettybuckets]

My Dr is away for a few weeks but when he returns he thinks I will start on xloda for a ER+ neck lymph node that has recently got much larger now 2+ cm. So I will read this string with interest.. espcailly any tricks to tolerate xloda

[Contrarielle in reply to Bettybuckets]

Me too! The MDM with surgeons re my neck node decided I should have a CT scan before they consider excision. Because if there is other growth it will be xeloda, no excision.

[Bettybuckets in reply to Contrarielle]

Hello dear- we are similar.both from nz! With bones and this neck node.mine was mm big since dx and then they biopsied it snd bam it grew to 2+ cm and really worried me.have talked about radiating not cutting it out. But no appts have been made. This thing grew after they switched me from Ibrance to the other CDK 4-6…now been on it for almost one month… doesn’t appear to be working and he says xloda up next for me.

[Bettybuckets in reply to Contrarielle]

I am waiting to hear today how my markers are… if they are up then in to xloda. But I just switched to Verzenio less than 1 month ago and wonder if it just hasn’t worked YET? But this neck node is worrying me so much… I worry that nothing will stop it.. and I will blow through all treatment. So I would like to hear option from a radiation oncologist.

[Contrarielle in reply to Bettybuckets]

How anxious a time for you. The waiting, not knowing what plan will be phases of treatment are the worst. My brain wouldn't unwind last night.I hope the next tumour marker looks good and they discuss RT soon. I can't remember our timezone difference but have a lovely day /night x

[Bettybuckets in reply to Contrarielle]

Hi Con- what is your real name. I am actually Beth. I lived on waiheke island until we sold our house in October! Where are you? I miss NZ so much… hoping to come next summer to visit if I am well enough.

[Contrarielle in reply to Bettybuckets]

Hi Beth, its actually Pamela and ill pm you my email, be lovely to catch up if you do get to come over in spring 😊

[love2golfwell]

I am inspired by your long run on Ibrance and am hoping for the same. I have seen lots of posts on this site about Xeloda and how to manage the side effects. I hope that you will have success with this medication and that the side effects will be minimal. Sending you hugs.

[Shelly1009]

I took Xeloda for about 1 year. Other than a pretty sever case of hand & foot syndrome I was relatively side effect free on this med. I'll take H&F over diarrhea any day!! Good luck

[Boogitymom in reply to Shelly1009]

Agreed

[kearnan in reply to Shelly1009]

May I ask what dosage you were put on? I am sitting here very upset and not sure if I want to continue treatment after reading about the side effects. I am in my fifth year and now it is spreading rapidly in my liver. The tamoxifen and afinitor I was put on for two months, did not work and the tumors got bigger. I am terrified and tired of side effects.

She said, after I asked why so high, (8 500 mgs. pills to be taken twice per day), she stated it was based on my weight and height and I am obese. I have not even taken them yet bc I am debating whether I want to continue this ride or just stop at this point. I am into stage iv for five years now. Just wondering what dose you were on that you had minimal side effects. Thank you.

[Shelly1009 in reply to kearnan]

pretty sure I was taking 6 a day. 1500mg twice daily.

[kearnan in reply to Shelly1009]

Thank you. I assume, that unlike me, you are not overweight then. She told me the high dosage (bc I remember reading others were on a much lower dosage) that it was based on weight and height. For the first time ever, I am terrified of taking this drug bc of what I am reading (and not just on this site.)