Tykerb Side Effects?

I'm no longer on tykerb (I had it with xeloda, but sadly no response). But I had the most horrendous rash-literally from head to toe. It faded after a while, leaving me with several areas which refused to clear.I also felt quite tired, but have no idea if this was the tykerb or the xeloda.

Hi gals,

It looks like Tykerb is used mainly when there are mets.  I'm also understanding that it can cross the bloodbrain barrier while Herceptin can not.  Can the taxotere/carboplatin cross the bloodbrain barrier?  I'm just wondering because I am starting on TCH this week and of course brain mets are on my list to worry about since I started learning about this beast of HER2+!

Hey Marianne,

I've been on tykerb since May, with a short break to have my ovaries removed...not sure how it is working yet, will see doc next week, and I think I go for scans soon....I am on only 2 pills a day right now, started with 5 and ended up severely dehydrated...Bathroom issues all day, every day...ughhh...I am getting it with Herceptin alone right now..

I don't have the rash that everyone is talking about, but the intestinal issues are daily still, even on the 2 pills...I seem to get headaches, the ones that feel like a hangover, dehydration still I guess....I try to drink a ton of water, but with the heat and meds I think I keep loosing this battle.. I didn't get the finger splits either, but then again it is summer, not sure what will happen in the winter and cold weather... I have a few toe nails that are a bit "fragile"...seems like I may have problems there from now on, I have one that is coming off and black ewwwww.....I know.. I've never lost a toe nail in my life..Just another "pretty "s/e...lol

How's a girl suppose to feel good about herself with all these things going on, I don't think there is one part on my body that is the way it use to be .....sigh.......

I had a very hard time on Xeloda, I was on it for about 7 months and they had to keep reducing my dose, s/e's very much like the tykerb, but the exhaustion  was crazy ...

Good luck with the tykerb, I'll let you know how it is working....Hugs KLynn

I took tykerb as part of a study for 1 yr while I was on herceptin.  I had severe side-effects including rash/diarrhea/lethargy/body aches/nails falling off/splitting/finger tips splitting/acne/neuropathy.  I ended up being on 3 pills(750mg) most of time but they did have to hold them for a while at one point. my oncologist thought that my extreme symptoms were mostly a combo of the tykerb/herceptin together as both can cause different se. I think they jsut didn't know which or both were the causes of what se's. I have to say I felt like shi* most of time.

I completed the trial in may and am feeling so much better. all the symptoms (except lingering lethargy/body aches) gone. my nails are growing back. I only hope that those drugs worked (and will cont to work).

I did 4 rounds of Tykerb before my surgery in a clinical trial and had a horrible rash.....(pictures on my caring bridge page). My Onc. sent me to a special dermatologist who deal with chemo side effects. He gave me a prescription....and dang...I don't remember the name of what is was....I am not at home......but it cleared it right up......that dermatologist also recommended a coverup for me called Natural FX which he said would not interfer with the medicine and it was the only thing that covered it......I still use.