Enhertu

Donna H · 03-11-2022, 07:44 AM

Hi Smim-

I dont know how to access the group on facebook. I have never been a facebook user. I get treatment #3 next Friday. So far, the worst side effects have fatigue and constipation. And so far, I still have my hair.

jacqueline1102 · 03-11-2022, 12:21 PM

Hello Donna,

Here is the link

https://www.facebook.com/groups/478640293032630/

I am not on any social media with the exception of this group. I do not use my real name. This FB page is an excellent site with a ton of information and support.

Best wishes,

jackie

smim · 03-12-2022, 03:00 AM

Thanks Jacqueline!

@Donna: Nice to hear you've still got your hair. I was told about 1/3 lose it? but also that it sometimes comes back during treatment, and no idea if a cold cap would work.
I'll be starting end of the month. After an ungodly number of measurement exercises because it's a trial.

I've been on FB for a while now, but I don't post my cancer stories there. Totally anonymous on a forum like this is one thing; but having acquaintances and colleagues in on my most vulnerable issues ... i'm still not sure i'm ready for that.
But I am on a forum for metastatic breast cancer on facebook that's also "private" like the enhertu one. I'll be the only Enhertu user on that group.
The good thing about private FB groups is that the people in the group see only what you post in the group and your public profile- so there's a level of anonymity still
It took some getting used to, that I was "posting about cancer issues on facebook" - but it's really not the same as the usual facebook experience.

I hope the treatment works well for you both
smim