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Old 01-20-2018, 03:19 PM   #12
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Need input, KADCYLA or TAS116?

Hi Flori

Hope you don't mind me joining in!

Don't know very much about TAS116 but have some experience of Kadcyla/immuno phase 2 trial (180 patients worldwide).

Last year I progressed on Xeloda and had to change treatment.

There was little choice available on the NHS/UK - but "I was lucky" (Doctors words) a trial was available that would suit me - Kadcyla & Tecentriq (immuno drug)/ or Placebo. Well it was a no brainer - I wanted Kadcyla and it was only way to get it in my area.
Joined the trial last February and did well on it until recently.

I had no problems on it, felt good, very minor side effects. So much so, I was convinced I was the only one on the placebo with Kadcyla. Still feel good but a few months ago bilirubin went up ( known side effect of Kadcyla). So some cycles missed or delayed.
4 weeks ago trial unblinded as immuno drug not showing any great benefit. Turns out I was on drug! We were asked if we wanted to stay on trial so 3 of us decided to stay.
Well - that didn't last long this week bilirubin still high so I was time-barred from trial.

This was a phase 2 trial. I don't know what it would be like on a phase 1! Have done a phase 3 trial with no problems.

Like you med team promoting it and only a few days to decide. it was a gut reaction for me - had to do it!

i'm sure you will make the best decision for you

Juls

Last edited by Juls; 01-21-2018 at 04:58 PM.. Reason: spelling
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