All about Xeloda

On Xeloda for 8 month, 1500 twice daily, 7/7, still working, no much side effect. Hope it keeps working...... 

Wow, 8 months is great!!!!! I'm 2000 2 x's a day 14/7. We are not too bad. Better than hormonals I was on.

Take immodium everywhere you go.  If afraid of constipation, take half can always take more later.    Its been 6 months since i was on it and that's the worst SE i can think of!

I was on 1500 2x daily 7/7 but my feet and hands were getting too bad, so he gave me an extra week off and lowered my dose to 1000 2x daily.  My hands and feet peeled like crazy on my break, but then it improved once I started X again.  Weird.  I just finished my first week on the lower dose and my hands/feet aren't as bad as they would have been on the old dose so I'll see how it goes.  I did start feeling a bit achy in the interim so I think my mets were having a party, but it feels like the X is doing it's job now.

Howdy X-Divas!

Checking in...been a bit.  Continue to be on 4000mg/day 7 on and 7 off for a year now.  H/F symdrom was really annoying and periphriel neuropathy was bad - at the 10 month mark, neuropathy started to subside and I no longer felt like I was walking on pillows and the 'wrapping' of the skin around the sides of my nails has all been gone away.  Still a little peeling on the feet but managed with regular moisturizing - hands, well, no redness and quite soft as long as I keep hand cream on.  Nails got destroyed - gardening took a toll so I opted to get nails on - big boo-boo.  After wearing them in hopes of allowing the tips of my fingers to recover, had them removed after a month and my nails are crap.  Working now to restore the nails.  Fingers are only slightly numb at the very tips.  No nausea and bowels ok.  Recently, I believe I have experienced another fracture in the spine - minor one but the acities is back after being taken off X to allow the antibiotics for UTI work (had to do extra rounds to get rid of it and I totally forgot to take the probiotics...duh) so tummy is bloated again but not nearly like last years adventure...whew! I think after Tuesday Avastin, this will really start to go away - I don't expect great scans on Oct 9th but I don't expect any significant progression so onc and I are content with sticking with the regimen even if there is an increase in the acities - with Abraxane failing last year and the Xeloda/Avastin combo resolved it, it makes sense to allow it to work again and I am confident that it will.  Fatigue is again an issue but I know this will resolve once the abdominal issues subside.  It is just annoying!  

I am so glad to see so many of you getting excellent results!  Woo-hoo for you!  And for those moving on to another treatment, I wish you the best - do check back and let us know how you are doing.  I am really interested to see how the trial works for RVLiving! 

Hugs to All...X-Diva LowRider

Hi, lowrider!   Im an ex but happy to see you!

Gail...I have treatment on Tuesday and I am going to bring that up - it is slow to be absorbed and it is but a one shot draining would sure feel good and instant no more bloating!  Good thought...thanks!

Hi, guys! Just want to share some good news. My mom had her quarterly scans this week, and X/Tykerb is still working for her after 8 months! The report mentioned a small increse and change in the look of one liver lesion, but they said they didn't know if it was worsening disease or changes due to treatment, so her onc said there's no way she would make a change based on that info. YAY! 

A question for you all: Mom's been experiencing some muscle cramps during the last several days of her 14 days of X. No other real side effects besides that which are bothersome, but her onc said she could switch to 7 on7 off if she wants and that if there is progression next time, it would definitely NOT be because of this change. The side effects are not anything debilitating, just annoying, so she's having a hard time deciding what to do. I told her I would ask you ladies about it for her. The onc did mention side effects being cumulative, so Mom is thinking maybe switching to 7/7 would keep them at bay and allow her to be on this treatment longer if it continues to be effective. Of course, we worry that this is less meds overall and that it could lead to progression, even though the onc says not to worry about that. Any thoughts?   

 Good to hear from you, Low!  

I just started on xeloda and Tykerb. Thanks

I just started on xeloda and Tykerb. Thanks

I just started on xeloda and Tykerb. Thanks

Hi ladies.  I've been busy away from the boards since Sept. 1.  I have been doing my FEMA job in Louisiana and will be going home on Oct. 1.  30 days was enough.  For the most part X has been good to me.  I'm 7/7 at 1500mg twice a day.  My back gave me great problems at first because of the basic chairs we were sitting in all day.  I found a better one last week and now my back doesn't hate me so much.  On day's 5, 6 and 7 my feet getting the tingly burning sensation and I walk funny but it drops off quickly on the off week. 

 So all in all I tested my ability to work and have survived but I'm ready to go home.  Tired a lot.  Some queer sensations now and then that made me fearful something bad is at work but I'm pushing those thoughts away.  I told Onc. no scans until after cruise week October 21.  I see her in two weeks and she mentioned taking a two week break before the cruise to help my white blood count improve since something like a cruise can be a risk if someone starts spreading a virus around.  I figure my workplace tested that pretty good as well so I think I'm feeling bulletproof for now......sort of.

Another week of 12 hour days and I'm headed home.  DH says it can't come too quick, he said when he has to do everything at home he appreciates me more.  LOL.

Chickadee - I took a 6 week break from X, we went on an Alaskan bus tour and cruise.  My hands and feet were very sore before so my onco wanted me to go off so I could keep up with everyone else.  If I had not taken the break my feet would have been to sore and I could not have done any walking.  If I had not had sore feet I would have stayed on it longer but he said I needed about 3 or 4 weeks to get them ready to travel or he was not going to let me go.  They did heal great and I had no problem.  I asked about starting the X the second week of the trip which was the cruise and he told me no, go and enjoy your break and vacation, so I did and started it the day we got home.  I am glad I did, I had the energy, felt great and enjoyed every minute of the trip.  I know we all have to decide what to do for ourselves, just letting you know what I did and how great I did feel.  I had been on it a year so guess I wanted the break also.  I certainly admire what you have been doing and how tired you must be.  Being away from home like that wears on you anyway and then when you are taking X also.  I am sure October 1 can not get here soon enough for you.  Have fun on your trip and best of luck with your scans.

Thanks for explaining why week off is worse.  I just couldn't understand why I am so tired the week that I don't have to take xeloda as compared to my weeks on.  My feet and hands burn more during that week also.  I'm not a big drinker so I guess I'm going to have to push myself to gulp down that water.

Had ct scans today. Got lucky as they found a good vein first time. Usually have to play 'hunt the vein' after 4 cycles of FEC last year. See onc for results on Friday.