Starting Tykerb/Xeloda this weekend...
 

Hi All~

After much deliberation, I've decided to start on Tykerb+Xeloda to beat back these sternal nodes (& hopefully ALL mets, everywhere)!
Thank you to everyone who's posted here - w/helpful hints & info about dosing- how & when- the SE's-like rash, diarrhea, hand/foot syndrome - & proper diet, etc.
I have to admit, I feel a little strange about abandoning Herceptin, as it has been part of my regimen since my diagnosis 7 years ago. But it seems like it's just not working for me anymore as a solo agent, & not effective enough to really knock this disease out when combined with chemo.
Keeping fingers crossed for The Rash!

Thanks again, everyone.

Keep the Faith~

Jessica

It really is strange to stop the herceptin! Good luck with the new combo. You know from reading here, be sensitive to the dosing and side effects. And you might need to hire a social secretary to keep you on your pill schedule!

Hi Jessica,

I hope that you have the same freedom that I have felt with Tykerb and Xeloda. I take 2 pills in the morning with breakfast 1 hour after I have taken 5 Tykerb. Then I take 2 more Xeloda at dinner time. I haven't had hardly any side effects and have been free of the cancer center... first time in a few years. Wow was it nice. I hope it feels the same for you over time.

It was strange to leave Herceptin but I love pills instead of IV's.

Love, Hope, Peace,
Carolyn

Hi Jessica-

Yes i, left the herception to tykerb and xeloda and I don't know how the progress is going yet but I am praying that i will have some movement of some of these mets. I take 5 tykerb in the morning on an empty stomach. And then 3 xeloda after breakfast (30 min or so) and 3 after dinner so not a bad schedule.

Good luck on this treatment and I hope it works out for you

Gail

For my 18 months on Tykerb/Xeloda, I took Xeloda with breakfast and dinner, and then Tykerb at bedtime. It was the easiest way for me to get the timing right. Now that I am on Tykerb/Herceptin, I still take Tykerb at night...

Brenda~
Thank you for all your encouragement & insight! I'm following "Your" regimen - Tykerb@ night right before bed, & Xeloda in the a.m. with food, then 10-12 hours later I take the 2nd dose.
So far, so good.
Side effects not too terrible - some GI stuff, but nothing too major. And I have noticed that the 1st hour right after I take the Xeloda I have to be pretty mellow...no popping pills & running out the door! I did that the other day & that was a big mistake. I was woozy, nauseas & foggy-headed - definitely not good for driving around & running errands!
Learning how to manage these meds makes all the difference in the world, so thank you again for all your guidance!

Jessica

Just a few more hints for you:

1. keep immodium in your back pocket for the first month or so and always know where a bathroom is...

2. something I just learned from experience - I have never been one to chew gum. But, for some reason I started about 6 months ago. Well, that's when I started having some unexplained GI distress, and very unpleasant GI symptoms. Turns out that chewing gum can be very bad for anyone suffering from Irritable Bowel Syndrome. Even though I don't have diagnosed IBS, I consider myself similar to an IBS patient due to Tykerb side effects. Well, once I stopped my new (and now former) habit of chewing gum, my IBS like symptoms disappeared. Interesting, no?

3. In my experience, it took me about a month for my guts to settle down after I started the Ty/Xel combination. I have to eat very very clean and healthy. It really makes a huge difference. During that first month I ate the BRAT diet for breakfast everyday. (Banana, rice, applesauce, toast). And, my doctor told me to take 2 immodium tablets immediately when the diarrhea started, and then to take one after each subsequent episode, until it stopped. I worried about taking too much immodium in a 24 hour period, but I did let myself take a total of 6 in a day when necessary. It did work well for me. After about a month, my bowels settled down. But, it always comes back if I break down and eat unhealthy. I can't eat anything fried or any junk food (potato chips, candy, cokes/sodas). The cleaner and healthier I eat, the more regular I am. I only indulge in fast food maybe once every couple of months if I am in a hurry. Otherwise I eat very healthy... fresh, clean, no processed foods from boxes (except pasta), whole grains, non-fat organic dairy, very little meat/poultry, very sporatic alcohol. That's what works for me.

My thoughts and prayers are with you, Jessica. (was it spearmint gum, Brenda, or all chewing gum?)

google it - for me it has been doublemint.

Good luck, Jessica. I'm sending good thoughts from Central Texas.