Add me to the brain mets list

[VirginiaGirl]

Hi Ladies,
It's been a while since I've posted, I usually lurk though. But now I find it's time to write since last week I was dx with those damn brain mets, and have already started WBR (3 down, 11 to go) and of course steroids. I have too many mets (11 or so, the largest is on my brain stem of about 2 cm with some edema) to do focal treatment at this point. If it recurrs in only a couple spots, that will be an option, but if not...

I had not had a brain MRI for a few years, have been advised to wait until I had symptoms like headache that wouldn't go away even with aspirin, which never happened. Maybe I shouldn't have waited! Oh well. But we found it in a PET scan, it showed only a spot, obviously the MRI gave a different picture. The PET also showed progression in my spine and chest lymph nodes.

I had been all set and excited to get into the expanded access T-DM1 trial in Fairfax, Va, hence the PET scan. The trial is still an option for me once the brain mets are treated (have to wait 30 days after) and assuming I don't have to stay on steroids long-term. I will be meeting with the onc soon to discuss any interim chemo.

I knew at some point I'd have to deal with this, I just didn't think it would be so soon (it'll be 6 years next month since my original dx).

Hang in there, friends, one moment, one day at a time!
Peace,