xeloda trouble already

grandma2 · 09-08-2008, 12:24 PM

am just starting my 2nd week of xeloda, 4000mg. i'm feeling just terrible. some of my se's are not the usual but i don't think they're good. lungs hurt, blood sugar readings going up each day, just had a doozy bloody nose. totally exhausted and it's just 1 week. today am to start tykerb and i'm a little scared. talked to onc office this am and was told this is the standard dosage. yet i read most are on lower dosage. i need advice fast please.

Believe51 · 09-08-2008, 01:58 PM

Is there anyway he would adjust your dosage?? If you feel that you need a lower dosage or that you would want to explore that possibility, call him back to discuss your needs! You call the final shot. If we were in this situation I would be calling back to talk again with the doctor. Express to him how you feel! See what he thinks when you approach him. Many have adjusted their meds with their doctors help. Good luck>>Believe51

grandma2 · 09-08-2008, 02:22 PM

just got off the phone with my onc. why do they do this. she insists that these se's are not from the xeloda. i asked her about taking daily baby aspirin before i started and she said ok. now she said that the nosebleed was because of the aspirin. but finally did say that i can stop the xeloda till the 17th when i see her but to start the tykerb tonight. she keeps saying i have alot of disease in my abdomin and need the xeloda. she doesn't give me much chance to talk. when i see her i'll ask about taking a lower dosage of xeloda but i already know what her response will be. thanks for your advice.

Sheila · 09-08-2008, 03:21 PM

Grandma2
I was on Xeloda for over a year and I was on 2500mg a day, with little or no side effects....they have found that the old standard 4000mg a day is not needed to get effective treatment....talk to your onc. and get it lowered!

Diana1993 · 09-08-2008, 07:14 PM

Thank you Sheila for that info. I started with 4000mg and then had the dose lowered to 3600mg. and changed from two weeks on and one week off, to: one week on and one week off. Also, without permission I lowered it to three to 3300mg. I still have some hand/foot syndrome, but at least it is tolerable. Is there anyplace you can lead me, to get the info on lower doses?
Hugs,
Diana.

grandma2 · 09-08-2008, 07:57 PM

thanks sheila. do you think the lower dosage is why xeloda didn't work or stopped working? that is what she will probably tell me...that if i lower then it won't be helpful. diana i'm wondering about you also. is your lower dosage keep you stable or even improving your situation. thanks, grandma2

Sherryg683 · 09-08-2008, 08:39 PM

I was on Xeloda with Taxotere and herceptin, and I know I wasn't put on 4000mg. That sounds high. If I can remember right I think I was put on 3000mg and still had hand foot syndrome really bad. It was reduced a little but I can't recall the exact dose, been awhile. I was 2 weeks on/ week off. I remember my oncologist saying that they had adjust the doses on everyone because in the beginning he had patients coming in with their skin peeling off their hands and feet and no one wanted to take the drug. I guess the lower dose of Xeloda worked for me as I am still doing well.

hutchibk · 09-08-2008, 10:42 PM

Sheila is correct!! And it will probably help you to start one first before the other when it comes to Tykerb/Xeloda. I started Xeloda 10 days before Tykerb and I think it really helped my body get used to the new regimen. I didn't have any of the probs you have described and am hanging in there just fine 18 months later... very very few se's.

Lowering the dose of Xeloda won't necessarily get you a worse result efficacy wise - the real work is done when the Xeloda and Tykerb work together synergystically. You must convince her to seek out the info about this and adjust you accordingly.

Conventional and approved Xeloda dosing is on a 14-on/7-off schedule 1250 mg/m2 twice daily (total of 2500 mg/m2/day). http://www.rocheusa.com/newsroom/cur...007060201.html

However, this link below sounds like the plan she is probably working from, but you are supposed to do 7 days on and 7 days off if you are taking 4000 per day (not 14 days on and 7 days off on this regimen). http://www.reuters.com/article/press...08+PRN20080418

Regardless, you can be adjusted down on your dose so that you are not so riddled with side effects - and still get the same efficacy.

Sheila · 09-09-2008, 05:30 AM

Grandma2
Brenda is right....I was on the 14 day on, 7 off regime, but last year it was discussed at ASCO about the lower dose not affecting the efficacy.....I got over a year out of Xeloda, and that seems to be by path, as Taxol has yielded me a little over a year. I would talk to your ONC!!! There are many who are not "up to par" on the new dosing amts., as 4000 mg a day used to be the norm.

kk1 · 09-09-2008, 05:50 AM

A word of encouragement, I actually feel better during the weeks when I am taking both Tykerb and Xeloda together compared to the week when I have Tykerb alone. I guess it is a ying and yang type of thing with the se's. Together they balance each other out.

btw-When I started the treatment I had both at the same time eg. no intro with Xeloda alone to start, I am also on the same dosing 1250mg 2x daily 2 weeks on 1 off as Brenda.