Tucatinib/Tukaysa August 2021

Hello everyone

Hope you’re all well and having a lovely day. I’m not entirely new to BCN. I was part of Breast Cancer Care volunteer team after being diagnosed in 2012. I recovered then thankfully and had loads of fun being part of the 2014 models, volunteering at the shows, running workshops and speaking at a Christmas carol event. 

Sadly, in2019, cancer returned with the biggest bang. I still  can’t believe it, as I am usually quite disciplined n terms of food, drink and exercise. But it is what it is. Cancer affected my liver, bones, lymph nodes mediastinum, neck,  brain, and spine. 

i have had ongoing treatment since then and while herceptin and several drugs helped along the way, my brain lesions just got worse. At one point I had about 70 lesions !!
 I’ve been waiting for access to Tucatinib for months. I was first told that it had been approved by the EMA but not yet by MHRA and NICE and therefore couldn’t get it. But in the end it was approved by the hospital I am employed by. 

I’ve been on it for a week. For the most part I’ve been very dizzy but that could also have been because I’ve been bed bound due to a fall and subsequent inability to walk. 

i presume it’s early days but I am manifesting☺️and hoping that after 2 years of being ill all the time I’ll have some respite

Sorry for the long message but I thought it was good to give you some background please let me know if you are on the same protocol and I’d love to know how you’re getting along daily. 
So many people have had good results on this drug and I’m hoping that it will be us too

Look forward to hearing from you 

Jill x