Tykerd/Xeloda Results/Side Effects

Kathy Boyce · 10-03-2007, 07:08 AM

Hi everyone, I'm a new poster, and I am just about 1 month in on the Tykerd (5 a day) and Xeloda (4 in the morning and 3 evening)14 days on-7days off. I am happy to report my tumor markers were down 3 points after just 3 weeks (156 to 153). The cough is just about gone. So far I am finding this Tx very easy on me. Hardly any side effects. I had a little face rash starting at 2 weeks, but since has let up. The only thing I have now (actually had it over a week now) is a big ole lip sore. I'm not sure if it's the chemo or not, but I've never had a cold sore this big or last this long before. Has anyone else on any of these drugs had problems with cold sores? The only other thing I noticed is my eyes are on the dry side.
So far hands and feet are fine, and no diarrea. I would love to hear from anyone who is on this combo, and hear about results and side effects.

I'm in hope this combo continues to be this easy and works for a VERY LONG TIME.

I was Dx in 2003 with Lymphangetic Lung mets. I got almost 3 years with Herceptin/Navelbine.....Hormonals didn't work for me. I was on monthly Faslodex shot from Jan. 07-Sept 07, It kept my markers level, and then in Sept. they jumped 50 points. So time to start a new.....Tykerb/Xeloda.
Kathy Boyce

hutchibk · 10-03-2007, 10:19 AM

HI Kathy - Welcome!

Sounds like you are tooling right along. I have had a very minimum of symptoms like you on this combo... I have been on it since May, in my 8th cycle I think. I hope to stay on it for 50 years!

I don't get sores on my lip, but I do get 'fever blisters' on my tongue that last about 7-8 days sometimes. I think it is an immune reaction to the chemo/Xeloda. If that is the worst that I get, then I am counting myself lucky!

Best of luck.

Julie2 · 10-03-2007, 10:22 AM

Hi Kathy,

Welcome to the board. Sorry I cann't offer any experience about Tykerb/xeloda as I am not on that drug. But many people here are doing that combo with great results. I am curious about your experience with Herceptin/Navelbine. How long were you on that combo? I am currently on that for my chest node recurrence.

Thanks,
Julie

doh2pa · 10-03-2007, 10:30 AM

Hi Kathy,

Welcome to the club! I've been on T/X since May and it has worked wonders for me for both liver and lung mets. It's been the easiest combo I've been on. I haven't gotten any mouth sores, but my mucosa gets tingly. So I stay away from spicy food and very hot (temp) foods. It's interesting that the first time I got any diarrhea was in early September after being on the combo for over 3 months. It was controllable with Immodium. My feet are a little red and get sore if I overdo it. I am the queen of creams! I have a stash of hand and foot creams everywhere - kitchen, night stand, desk drawer, purse and find the ones with shea butter and good old vaseline work best. My hands and feet have definitely been dryer so maintenance is uber important. Most often side effects emerge on the off week, which is odd. But like Brenda, I hope to be on this for a good long while!

Good luck - sounds like you are responding already, which is a good sign of things to come.

hutchibk · 10-03-2007, 11:51 AM

Hey Donna and everyone - I have found the most amazing cream for my feet at night (with socks) - it is called Brave Soldier Friction Zone. OMG. It is a miracle worker. Google it!

Kathy Boyce · 10-03-2007, 12:05 PM

Julie I just replied to your question about Herceptin/Navelbine, and somehow I lost it. When I get a moment I will answer you again.
Kathy

chrisy · 10-03-2007, 05:49 PM

Kathy,
I'm glad to hear you are getting good results and find the combo easy to take.

I'm on Tykerb+Avastin and have found this easy as well - I had a little bit of the rash but that did include a cold sore on my lip.

Who knows!

doh2pa · 10-04-2007, 02:14 PM

Hey Brenda,

Thanks for the recommendation on the creme - I'm always looking for new potions. My bathroom looks like a hand creme department store! I find the ones that are petroleum based work the best for at night but are too greasy for during the day (I can't get out of the bedroom cause I can't turn the doornob!). How are things with you?

Donna

hutchibk · 10-04-2007, 02:57 PM

hahaha - slippery doorknob syndrome. I am good. Gearing up for a couple of scans, but nothing new. Just tooling along. And you?

doh2pa · 10-07-2007, 12:19 PM

Hi Brenda,

Doing well thanks. Had a bad week the beginning of sept with diarrhea for 7 days, but got that under control and all is well. Scans two weeks ago continue to show great results. I'm sure yours will be great too. Let's keep this going a long time sister!

Donna

Kathy Boyce · 10-13-2007, 12:29 PM

Just an update after my second cycle of Xeloda/Tykerb. On the 14th day of my first cycle, I developed the skin rash..lasted only a few days. ...7 days off xeloda...and then on the 14 day of my second cycle my fingertips are starting to feel a little tender as do the balls of my feet. I'm trying to keep lotion on them. I 'm in hopes I don't have to much of a problem in the next week. We are leaving for Las Vegas on Monday morning and will be gone for 9 days. We plan on doing a lot of sight seeing, so I pray I can keep up.
Other than the tender spots on the feet and finger tips, all else seems fine. I have a Dr's appointment upon our return. I can't wait to see if my markers are down.
Kathy

adrien · 10-13-2007, 03:09 PM

Hello,
I've just started Tykerb after 17 mths of Herceptin. I'm not on Xeloda as I'm having radiotherapy. I read once that on Herceptin you could get pain in the sites of metastices; is this the same for Tykerb? I've not had any diarreoha-just constipation. I take acidopholus, Udos oils and essiac herbal tea.
Thanks
Adrien

Kathy Boyce · 10-14-2007, 08:50 AM

Adrien,
I never had any problems with my run on Herceptin. I feel it's probably to early in my treatment to tell about Tykerb. My side effects have been minimal so far.
Kathy