Tykerb...how many tablets
 

Just wondering what dose of tykerb you are on or have been on. thanks, Ceesun

When I took Xeloda with Tykerb, I was on 5 tablets of Tykerb. I was on that combo for 18 months.

Now that I am on Herceptin with Tykerb, I take 4 tablets of Tykerb. I have been on this combo for 6 months.

I have always taken it every night right at bedtime.

I tolerate it very well and have essentially no side effects to speak of.

Just to add confusion - I take (5) tykerbs a day - in the morning on an empty tummy. If I am in a really bad mood (lol) or feeling extremely tired or am traveling, I will adjust down to 4 pills and it makes a huge difference to my day. But mostly I stick with (5) pills a day.

This, by the way, is not a hoax.

GRINS.
Flori

PetuniaJans cousin Wendy here
 

This is my first experience following a blog. My first time reading your stories I cried. You ladies are such amazing, strong, positive women! I guess you manage as you do because you dont exactly have a choice. Well, you do have a choice, but YOU all have choosen to not give up. How brave you all are. I loved your support and encouragement to my cousin Janice. And she is such an optomistic lady that SHE will end up being the one encouraging newbies down the road. Your stories has given me hope and positive thinking for my cousin Jans upcoming battle. I know one positive thing that has come of this already. It is the bond of family and the love we have for one another. I cant wait to see Jan this weekend. I love you Jan...hang in there. Your little cousin Wendy xo
Prayers to ALL of you going up right now!! Have a positive day :) W

Cathy,
I think Flori's post was a hoax! Although I can support the notion of reducing a dose especially when traveling (and not kinowing where all the best restrooms in town are!)

I had tykerb but with avastin (so no chemo). The study I was on was for 6/day, I took them first thing in the morning because you have to take them on an empty stomach and I wanted to have my full evening snack window open. In retrospect, I would probably have been better off without the snack, but that's another story.

I was on a study, so had to follow the rules, but the "standard" dose is 5 pills/day and when taken in combination with Xeloda, it seems like many people had to reduce the Xeloda dosage but for the most part the Tykerb part was doable.

If this is your next step, I think you will find it pretty tolerable. Brenda's our poster girl for this combo, she has great advise for managing the side effects. Check on the Tykerb/Herceptin forum for discussions on side effects, but remember we were probably "over reporting" as it was a relatively new treatment.

thanks for the good info--hopefully the 4 tykerb will move things in the right direction. You gals are a real lifeline....and the men, too!!!!

Ceesun,

I take 5 pills a day in the morning with empty stomach. I am on Herceptin and Tykerb.

Julie

Ceesun:
I just wondering why you only take 4 tablets a day? Are you having some kind of side- effect?
My wife took 2 with Xeloda (2 months ??) since last April, and is now having 5 per day at bedtime after her brain met.
I just can't understand why sometimes the oncs give a dose less then 5 tablets?

I had been on 3 since last August due to conflicts with another medication I am on. My docs have been doing EKGs of the heart. I have only been on 4 for the last 3 days. Ceesun

My wife have 5 per day now, and is well tolerate with it!

Donald, I was on 5 with Xeloda, and now with Herceptin I am on 4 because with 5 I was struggling with diarrhea.

Hi -

I am on 5 Tykerb (in the morning before breakfast) and I am also on Xeloda 2 in the morning and two at night (two weeks on and one week off).

I was on Tykerb w/ Herceptin a few years ago and back then I took 4 Tykerb with Herceptin.

I have been lucky so far with side effects... not many.

Good Luck, Carolyn

How about fatigue with tykerb and or xeloda. I have been more tired the last week since he increased the dose from 3 to 4--can that happen? Ceesun

I think that would be a potential SE, Cee... I definitely had a little fatigue when I started Ty/Xel...

hutchibk,Hi,
My wife is taking 5 tykerb with injetion of vinorelbine now. When only have tykerb doesn't fatigue my wife,but with vinorelbine does.
Are you in a trial which combine Herceptin and Tykerb?
How does it work?
Donald

I am not in a trial, but I am considered a "research patient" -

I am having fantastic success with this combo so far... and I have no side effects that I notice.

hutchibk,
What does it mean by "research patient"? you know I am English---
The combo of herceptin and tykerb is so new here in my city, As a matter of fact, I don't think anyone here in Macao had try this combo treatment before. Could you also tell me how many Herceptin you are taking?
Thanks !
Donald

Herceptin is infusion every 3 weeks, I do not know the weight/measurement/dose off hand. I don't know exactly how it all works, but I think that "research patient" means that since the treatment combination that I am using is not approved yet for mass consumption by the FDA, I can get it because I am a metastatic patient (and there were no official trials open for me to enroll in) while the FDA awaits the final results from the trials in coming months or years, which I believe are going to be favorable results.

Thanks hutchibk, thanks a lot!

Like Brenda, I am also on Herceptin every three weeks and daily Tykerb. I take 5 pills every morning, about an hour before eating. I don't really have any major side effects. My finger tips occasionally get so dry that they crack and bleed. I've also had a few rashes and an acne outbreak which I suspect are related to the Tykerb since it targets epidural growth factor.