Starting Tykerb

Starting Tykerb

Starting Tykerb Hi

I’ve been told today that my hospital has got me on a trial for Tykerb. I have to go next week to sign the paperwork and apparantly have bloods done, ECG, etc.

Can anyone share any experience of what to expect? Ive never done a clinical trial before, what side effects has anyone had on this? i am having it along with xeloda.

I know I should be very grateful as i know a lot of ladies are wanting this drug, but I would appreciate any info as i’m feeling quite scared at the fact this drug isn’t licensed and dont know what to expect and above all very scared in case it fails.

love Jakki

Good luck Jakki Anyone on a clinical trial gets lots of attention, more closely monitored than someone not on a clinical trial so that has to be a plus.

I don’t know anything much about tykerb but this link to a site in States has a lot of good information:

I started xeolda a week ago (with navelbine.) Find the tabs easy to take. Had one bout of diarrhoea but that might have been some dodgy fish. Am feeling tired but nowhere near as bad as AC or taxotere.

Thinking of you as you start treatment again…good to hear NY was so great.


There are people on Tykerb at this site. It is a wonderful group - especially if you are her2 positive. I’m sure it will be of much help.

thanks Thanks Jane on your good wishes and sharing your experience of Xeloda. I hope the new chemo regime is being kind to you but at the same time blasting those nasty cells!

Its good that they keep an extra eye on you with these trials so thanks for reassuring me.

monieda - thanks for the link - i’ll check it out…

love jakki

Starting Tykerb Hi,
I have been on Tykerb/Herceptin trial since last November, for liver mets. The main side effects have been rashes, acne type spots on my face, very dry skin (sore finger tips) and very gradually my hair has changed texture - it’s now very dry/porous and when it’s wet it stands up like a bottle brush! I also feel slightly nauseous a lot of the time, but nothing major.
Sadly, although it has kept things stable for 6 months, my tumour marker is now increasing again, so my Onc is considering the next Chemo regime, and abandoning the trial.
Hope this helps, and hope the drug is more successful for you.
Best wishes, Love S.