Ember 4 Trial

Hi

i am on this. It was intense initially- lots of scan, ecg, etc but I only go every four months now. 

I got the standard of care, which I was disappointed with, but they need the info. There is a similar one called cambria with a SERD made by a different manufacturer. Not sure if that one maybe has less scans.

good luck x

Thank you so much for getting back to me. I don’t qualify for the Cambria study. 

I just wanted to thank you both for doing the trials, you’re helping to shape treatment for the women coming behind us and that’s a fantastic thing to do. I was ineligible for the trials of anything for a variety of reasons but I, and other HER2 positive patients owe our lives to the amazing women who trialled herceptin and phesgo after that. I was shocked to find that in the early 90’s HER2 positive was pretty much game over for all but a lucky few but herceptin changed that, they changed mine and thousands of women’s outcomes. Thank you x

No worries- not sure where you’re based. I’m under Christie’s and they have been really good about getting scans etc done all on one day and trying to get bloods and clinical a same day as well. Hopefully your hospital will accommodate. 

That great, thank you. I too will be under The Christie. I was there yesterday, as I’m currently participating in the Trak-ER trial, but all things being well I will finish that soon, and will sign the consent forms for the Ember 4 trial shortly beforehand. I spoke to the oncologist, and I think that if I were randomly assigned to the ‘standard of care’ group, then I will change to Letrozole from Anastrazole. 

If you are in Manchester, there is a private clinic doing ember that I’d look at before you sign. It’s in Rochdale. I went as I wanted to swap- Christie’s are often swamped and I’m there a long time despite their efforts. This place in Rochdale does ember and they pay you for your travel and time and it’s a really lovely clinic with lovely staff and a lot more efficient. It’s called panthera clinic if you want to have a google. I went after I’d already signed so couldn’t move locations but have found the appointments at Christie’s taking ages. 

yes, I did used to speak to zephyr. I hope she is doing ok. I haven’t been on here a good while, I just got a notification today randomly and popped back on.  Are you nearly done with trak-er then and your ctdna was all clear every time? That must be comforting if so. 

Thank you, that is really useful information