HER2 Support Group Forums - View Single Post - Xeloda and Tykerb tomorrow

jml · 09-07-2009, 05:39 AM

Hi Carolyn~

I've been on Tykerb/Xeloda since the beginning of June, and so far so good (except for the fact that I'm paying for it out of pocket right now, due to no Rx coverage and grueling efforts to get patient assistance from Roche & GSK...but that's another story for another board!).

Getting the dosing schedule just right was the challenging part in the beginning, ie-remembering to eat with Xeloda, remembering to NOT eat w/Tykerb, etc.
I tried the dosing schedule as recommended by other folks here, but it didn't work so well for me.
My work day starts very early, since I own a Pilates studio & have early,early morning clients & classes. I found that uploading the a.m. dose of Xeloda, followed by the Tykerb made me nauseaus, flu'ish & tiredTiredTIRED all day long.

Here's what has worked for me:
*9pm Xeloda-dose 1 (w/a little food)
*11pm Tykerb (empty stomach)
...this allows me to sleep through the initial side effects of uploading the drug
*9am Xeloda-dose 2

I did have some GI issues in the beginning, but nothing horrible, and now 2 months in, my body has adjusted, though can still experience some GI stuff.

I thought I would be so relieved to do these drugs at home & not have to go into the infusion center for treatment, but it hasn't been quite so.
Ironically, I've found that since we're taking these 11 pills a day, throughout the day, this disease & treament is constantly "in your face". At least when I was going in for my infusions - whether once a week or once every two or three weeks, I knew that I'd be chained to "The Chair" for 4+ hours, have a couple of days of "post-chemo yuck", then have a physical & mental break from thinking about my disease & treatment, until the next infusion.
Because of the scheduling of this regimen, I have to constantly remember how to accomodate it within my day-I have alarms set on my phone & carry food with me so that I can take my morning dose of Xeloda while at the studio and sometimes I fall asleep without taking my Tykerb. All in all, I'm having a good experience with it & I hope you do too!
Ultimately, I'm happy to take any treatment regimen, and will endure the side effects/inconveniences, so long as it's WORKING!

I hope this info is helpful!

Keep the Faith~

Jessica

09-07-2009, 05:39 AM	#14
jml Senior Member Join Date: Dec 2006 Posts: 415	Re: Xeloda and Tykerb tomorrow - side effects? Hi Carolyn~ I've been on Tykerb/Xeloda since the beginning of June, and so far so good (except for the fact that I'm paying for it out of pocket right now, due to no Rx coverage and grueling efforts to get patient assistance from Roche & GSK...but that's another story for another board!). Getting the dosing schedule just right was the challenging part in the beginning, ie-remembering to eat with Xeloda, remembering to NOT eat w/Tykerb, etc. I tried the dosing schedule as recommended by other folks here, but it didn't work so well for me. My work day starts very early, since I own a Pilates studio & have early,early morning clients & classes. I found that uploading the a.m. dose of Xeloda, followed by the Tykerb made me nauseaus, flu'ish & tiredTiredTIRED all day long. Here's what has worked for me: 9pm Xeloda-dose 1 (w/a little food) 11pm Tykerb (empty stomach) ...this allows me to sleep through the initial side effects of uploading the drug *9am Xeloda-dose 2 I did have some GI issues in the beginning, but nothing horrible, and now 2 months in, my body has adjusted, though can still experience some GI stuff. I thought I would be so relieved to do these drugs at home & not have to go into the infusion center for treatment, but it hasn't been quite so. Ironically, I've found that since we're taking these 11 pills a day, throughout the day, this disease & treament is constantly "in your face". At least when I was going in for my infusions - whether once a week or once every two or three weeks, I knew that I'd be chained to "The Chair" for 4+ hours, have a couple of days of "post-chemo yuck", then have a physical & mental break from thinking about my disease & treatment, until the next infusion. Because of the scheduling of this regimen, I have to constantly remember how to accomodate it within my day-I have alarms set on my phone & carry food with me so that I can take my morning dose of Xeloda while at the studio and sometimes I fall asleep without taking my Tykerb. All in all, I'm having a good experience with it & I hope you do too! Ultimately, I'm happy to take any treatment regimen, and will endure the side effects/inconveniences, so long as it's WORKING! I hope this info is helpful! Keep the Faith~ Jessica