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-   -   Just Wondering (https://her2support.org/vbulletin/showthread.php?t=34039)

D.W. 05-19-2008 06:57 PM

Just Wondering
 
Hmmmm....not liking Tykerb/Xeloda right now. The jog to the bathroom is unpleasant. For those of you who have been using it long term; do the side effects seem to regulate after awhile? Food is not very appetizing now; even chocolate!!!!

My onc took me off of herceptin because it wasn't working anymore. The BC spread to the brain (had radiation) and then after that radiation was finished they found bad stuff in my hip and two vertebrae. So now I'm doing more radiation.

Do dr.'s keep you on Tykerb/Xeloda long term? Like more than a year?

Thanks!!!!

D.W.

hutchibk 05-19-2008 10:36 PM

HI DW - I am out of town and don't have enough time to give you all my helpful Ty/Xel info tonight. I will post tomorrow, but I think I can help you. I have been on T/X for just over a year now and I love it! It has been very easy to tolerate and I am NED and still holding strong....

Joannie 05-20-2008 04:51 PM

D.W.
I was on the teach trial for one year. Just finished. It was Tykerb alone. The diarhea was pretty consistant for the first three months. After that it tapered off and it seemed like I would have "issues" about once a month. It was probably due to something I ate as well. My onc. was going to prescribe something to reduce the diarhea, but I didn't end up taking anything. It just seemed to settle down. Hope it does for you too. Just try to drink a lot of water and eat a bland diet when you are having the diarhea.
Take care,
Joannie

hutchibk 05-21-2008 11:57 PM

Joannie's experience is similar to mine. I make sure that I eat as clean a diet as possible and that really helps my body with the Tykerb/Xeloda. No junk, no sodas, no fast food... no diarrhea! My doc plans to keep me on Ty/Xel as long as it holds me stable, and I will not complain. So far it has been a year and I hope it will be another 20 years at this rate.

D.W. 05-25-2008 01:46 PM

another question....
 
Thank you to those who have responded to my question.

One more question....it seems that I am to take Tykerb everyday, but Xeloda I am to take for two weeks and then be off of it for two weeks. Does the diahrrea seem to lessen when you are taking just the Tykerb? (Although I realize that your dose is possibly different).

I have found that eating bland food does help. Nothing else is really appetizing anyway!

Thanks!!

D.W.

Bill 05-25-2008 02:10 PM

Hi DW! I hope you're doing well and enjoying this great weekend as much as you can. My wife, Nicola, was on Tykerb for for about 15 months, and I'm sorry, but it seemed to cause diarrhea all by itself. When she took Xeloda, it was 2wks. on and one off. I'm sure your onc. has stressed that while on the Xeloda, if you have uncontrollable diarrhea, to quit taking the Xeloda and call them right away. Right? Where ya from, DW? My thoughts and prayers are with you, Love, Bill

D.W. 05-25-2008 02:29 PM

Hi Bill
 
Ah, I see, so T/X it doesn't matter?!!! Either medicine will cause certain side-effects. Okay, at least I'm better informed, Bill! Yesterday I asked my husband to go to the store and get me Immodium and that helped quite a bit. But if I need Immodium all the time; not so good. When I see the onc. next I'll definitely be saying something about that.

I'm from Indianapolis--hey, we just had a car race or something today.

Thanks for the thoughts and prayers!

D.W.

Bill 05-25-2008 03:57 PM

Hi DW! The immodium will help, for sure. Nikki had the big D from Tykerb alone, but everyone is different. If you try the BRAT diet, it will help. And, she took 4 pills of Tykerb every morning, I'm sorry I can't remember the dosage, and maybe yours is different. I wasn't trying to discourage you, only give you a little input. Many of our strong warrior women here have dealt with your particular meds. with a phenomenal degree of success. I'm new to the site, myself, and not an expert, but I think "Hucklebuck" may be the expert. She's the Man!


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