TNBC Metastatic

Dominic

My wife, Louise, has TNBC that has metastasized to liver and bone. I am really keen to talk to any patients that have Metastatic TNBC and are responding to a treatment, any treatment, traditional or non-traditional.  

My details are here: https://louisedecelis.me/

Regards - Dom 

onemargie

Hi there @Dominic. I’ve had TNBC In may 2016 stage 2a grade 3 no lymph nodes involved and all scans clear. I also had a double mastectomy and 8 rounds of chemo 4 AC and 4 paclitaxol but no Mets so far but I just wanted to let you know we are all here for you and your lovely Louise

 @SoldierCrab might be able to help you with this info. I have read about trials for TNBC. If you could let us know a bit more about Louise and her history we might be able to help more. Biggest hug. Margie

SoldierCrab

HI @Dominic,

I see you made it onto here.... I spoke with you via the TNBC facebook group (on messenger - Alice)

If you search on the forum search bar you will see any posts regarding Trials etc. 

Have you joined the Mets group ? http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

SoldierCrab

Here are some links for you....

https://onlinenetwork.bcna.org.au/discussion/19391/research-trials

https://onlinenetwork.bcna.org.au/discussion/19382/clinical-trials-webinar-what-to-know-and-who-to-ask

https://onlinenetwork.bcna.org.au/discussion/19232/the-past-present-and-future-of-breast-cancer-research-public-session-and-facebook-live-event

https://onlinenetwork.bcna.org.au/discussion/19224/nerlynx-trial

https://onlinenetwork.bcna.org.au/discussion/19182/anyone-on-a-drug-trial

onemargie

Thanks @SoldierCrab i knew you’d be able to help x

Dominic

Thanks @onemargie . Here is Louise's Treatment history  - https://louisedecelis.me/treatment-history-tnbc/, you will see that we are putting as much as we can online to help both ourselves and potentially others. Thanks for responding so quickly. 

Dominic

Hi @SoldierCrab, yeah, I've been struggling to keep up with all the comms, which is a good thing because hopefully more info to digest might mean more options. But I do get to every recommendation and read every link/article. 

I'll add all the links you just posted to my files and read them in detail. 

I have also just joined the living with metastatic group. 

Thanks so much! 

Dom

SoldierCrab

Glad I can help 

onemargie

@Dominic sounds like you guys are onto it with the trials etc. I just had a read her history. . please keep us posted how it all goes. .  how’s Louise feeling ?  Is a mastectomy another option ??  I’m sure you’ve already discussed this though .  Big hug Margie 

Dominic

hi @onemargie, lou had a left breast mastectomy in November. They did this after the chemo which seems to be more standard these days.  

onemargie

Holy shit @Dominic half my post didn’t come through for some reason and ive just realised!!  It’s my stupid sausage fingers and my iPad! I’m so sorry you must think I’m a dickhead!! It’s supposed to say Im sure the mastectomy and her current treatment are effective options for Lou and I’m sure you’ve already discussed this thoroughly though. I’ve read lots of really good things about the trials for TNBC. Keep us posted. Big hug. Margie