Anyone on Xeloda?

[Stage4Gir]

I think this may be my next step in this plan to interrupt my life so wondering if anyone here on it and side effects? Thanks in advance.

[Francesca10]

I will be starting it this week. Because I had so many complications on ibrance/ faslodex I got doc to agree to 7 days on 7 days off. There is a lot you need to know about it.

My stomach is my sensitive spot so I got zofran to take; you cannot take Proton pump

Inhibitors like pantaprazole, omeprazole. Got a prescription for Zantac 150- ins covered it. Next is the hand foot syndrome. Have to get urea based cream and keep

It on hands and feet during day- at night with cotton socks and cotton gloves. I am a nurse and wash my hands all day long so this will be a challenge. No flip flops! Ugh.

Have Imodium on hand. No fiber. Blood counts every few weeks while on it.

Hate this shit. This is while I go for liquid biopsy for pik3 mutation to see if piqray is an option.

There are moments lately I wonder if I should just let nature take its course. Having children and grandchildren makes me feel guilty to think that way.

This is the place I vent, rant and rave and I am glad I can be me here. It makes it harder for me when my kids know too much and I see their reactions. I try not to let them know so much. Exactly three years in with mbc.

Call the specialty pharmacy and speak to a nurse or pharmacist there. I don’t think I left anything out but double check.

Good luck, 🙏🏻🙏🏻🙏🏻 And hugs♥️

[PLASEM in reply to Francesca10]

It is going to be fine, are you still working full time, I am a nurse too working full time but sometimes I think I need to stop working, take care and God bless you

[barbarac76]

Hi. I've been on Xeloda since mid-February. It's been relatively easy (with regard to side effects) except for the hand/foot syndrome (more the feet than the hands).. At about the 7 month mark, I had a lot of trouble with my feet, but that's probably because I didn't follow the precautionary advice.

Everyone responds differently, but given my experience, I would recommend following the guidelines, which suggest avoiding long walks (I didn't), soaking your feet in cool water for 30 minutes twice a day (I didn't), and using a lotion with urea at least twice a day (I did).

After a visit to Chicago in which I walked 14,000 steps for two days straight, I came home with serious blisters on my feet (part of the problem was my sneakers were too tight because my feet were swollen after the flight). The blisters are gone and my oncologist reduced my dose from 1500 mg twice a day to 1500/1000 mg per day. Since then, I have been more careful and things are better. I also got a pair of extra wide sneakers. I recently visited my daughter in Colorado where we did short hikes (with a lot of time in between) throughout the week and I was OK.

There have been many posts on this website about Xeloda. Consensus seems to be that it works well and side effects are not that bad. I know everyone responds differently. I hope you have a good response. It's always an anxious time changing treatments.

[MacroMom]

I agree with Barbara's advice about caring for your feet. I've been on Xeloda 3 months and am just now beginning to be annoyed at how hot my feet are, and that they get sore with too much walking. Soaking in cool water definitely helps....we keep the grandkids' wading pool on the deck so I can stick my feet in anytime! My ND oncologist also recommend applying EMU oil with MSM; I just ordered some and will post about it after I try it. I got nervous when I got my first dose of Xeloda with an anti-nausea and two anti-diarrhea meds, but I haven't needed either and no digestive issues. I always take Xeloda after a good breakfast or dinner and drink a lot of water. I also take B6 (300mg/day) and curcumin, which may help with side effects. The only other medication I'm on is Xgeva every three months for bone mets.

I've read that, if you do start to feel hand/foot side effects, let your oncologist know right away. Because Xeloda is oral it's easy to lower the dose immediately and apparently that helps. I'm taking 1300mg twice a day, 7 days on, 7 days off.

If you put "Xeloda" in the search engine here you'll find lots of other posts about it. May you have a long and easy time with it!

[Stage4Gir in reply to MacroMom]

Thank you!

[barbarac76 in reply to MacroMom]

Look forward to hearing how the EMU oil with MSM works.

[BeckyinMaine]

I’m in a clinical trial with it and a taxane in pill form. I’ve done seven 21 day cycles with very good results. Early on I had two dose reductions due to stomach issues. I still have some discomfort on 2000 MHz per day, 14 days in a row with 7 days off. Be sure to use Udderly Smooth or something similar on hands and feet 3 or 4 times a day.

Good luck!

Becky

[Heath3]

I’ve been on it since November, 2018 when my cancer spread from bone Mets to fluid around heart and changed from er+ to triple negative. Had another bone biopsy to make sure I didn’t have 2 types. Fluid hasn’t come back, heart is good and bone Mets are shrinking.

That said, I had a challenging winter, flu like, running fevers, exhausted and hand-foot issues.

My body seems to have adjusted and as long as I rest, and use Shea butter I’m able to work part time, exercise, travel and volunteer. I also am doing several complimentary therapies. For hope and inspiration read ‘Radical Remission ‘

Good luck! Prayers and blessings to you❤️

[Stage4Gir in reply to Heath3]

Thanks for your input and I love that book!

[Klamato]

Yes, I get an injection monthly! So far, so good. I get a little sore for a day or so, but that’s it! Good luck. Kathy, syracuse