To all HER+ ladies
I have read today (in The Telegraph) that T-DM1 has been approved by NICE for funding through the Cancer Fund. Hopefully this means there is another treatment now available when Herceptin is no longer doing its job. I couldn’t see any additional info on the NICE website so I hope I have this correct but I know there has been a trial about its effectiveness so presumably the results have been very positive. Please feel free to correct me if I’m talking rubbish, I’m new to this HER+ game :wink:

Hi Nicky,


My onc mentioned a new treatment at the end of last year and I think this must be it. My research nurse for the pertuzumab trial I am on also brought it up again yesterday as another way forward if the treatment I am on stops working - the more options the better I reckon!  They couldn’t give me much information about it but I’d love to know if anyone knows anything more about it!

I have been on the trial since June 2013 and have had it every 3 weeks and no side effects…so far. I did have taxol in 2012 x

Hi All

It is indeed true.  I actually signed consent form yesterday to start TDM1 next week after trial with Pertuzumab,Herceptin and Capecitabine stopped working.  It was given the licence yesterday the same day as my clinic appt!   Good news indeed!  

:smileyhappy:hi ladies, I’m on the Marianne trial phase 3 which is TDM1 and been on it since dec 2011. Feel free to message me if I can be of any help. XJanine

Hi All


Finally started TDM1 on Thurs.  1st dose took 90mins, next one in 3 weeks will be 60mins then n 30mins thereafter.


Felt it actually working in eve. Definate niggle in right area. funny coz hadn’t had any pain/symtoms!  Have felt a little fuzzy/sicky but that seems to be passing.  Have taken anti-sickness tabs.  Has anyone else who has been on the trial felt the same?


Is there anyone else out there thats having it outside trials?


Be great to get any hints etc.  I picked up some really useful ones from here when I was on Xeloda.


Could we be called The Totally, Dotty and Mad Ones (TDM1 get it!)




Hi Elliedog


Yes it is all in one the T stands for the clinical  name for Herceptin. From what I understand it is very powerful/toxic and needs to be mixed with Herceptin which then takes it straight to work in the right places.  I will keep you updated.