Need info on WBR

KirisMum · 11-15-2013, 12:46 PM

We found out today that Kiri has brain mets. :-( She just called me. She's on steroids, and pretty hyped up (though talking to her mum can't have helped calm her down :/ ). There are about a dozen tumors all over her brain, they don't even know how big because of swelling, but they think under a cm each. They're starting whole brain radiation today, and finishing the day before Thanksgiving. And in the middle of everything, she plans to come down here (to NJ from Boston) with her boyfriend the weekend before Thanksgiving, then somehow get back to Boston on Monday for more rads, then fly down to Chattanooga on Wednesday when her radiation ends to meet up with the boyfriend and go rock climbing on Thanksgiving.

I'm worried that whole brain radiation totally wipes you out, you're not supposed to drive, but it's not my job to tell her how to live, especially at this point, so I just fret. And I'm so so scared for her, but she is handling this with courage and humor and aplomb, if somewhat on fast forward due to steroids, as she always does.

So those of you who have undergone WBR, what might we expect? I know--as I was reminded firmly by my daughter--that everyone's response is different. How long might she be on steroids? I hate what they do to her. They plan to scan her again a month after the rads, and she will stay on herceptin and perjeta, with the possible addition of another chemo, for the duration.

She is triple positive, and was declared NED just 5 weeks ago after 6 months of treatment with taxol, herceptin and perjeta for multiple liver mets.

Thanks all for any help and support.

Becky · 11-15-2013, 05:01 PM

Tykerb passes the blood brain barrier and could help. If they want to add a chemo, Xeloda and Temodor also pass the blood brain barrier. Just information - not advice.

KirisMum · 11-15-2013, 06:59 PM

Thanks, Becky. She was on Tykerb back in 2010 when she was first diagnosed and had a very bad reaction and ended up with pancreatitis in the ICU, so they won't give her that again. But she is meeting her onc on Tuesday & I think adding Xeloda to the mix is a definite possibility.

I am still in horrified mode. :-(

BonnieR · 11-16-2013, 09:27 AM

Reading this I don't know whether to laugh or cry. The news makes me sad but then in the next sentence she is going rock climbing! And that makes me feel joyful. Her spirit is indomitable!
I don't want to minimize your grief and fear. This has been a roller coaster of anxiety from the beginning for you and you have handled it so well under so much adversity. Hopefully her doctors will rein in the travel plans/climbing if they feel its a bad idea Or maybe they will give her their blessing. Otherwise I guess you have to keep doing what you have been, leaving her in Gods hands
You have raised one amazing girl
We all are here to support you. And share your worries. Please keep us posted
And keep the faith

StephN · 11-17-2013, 01:01 PM

Very sorry to hear that news. This takes me back to our dear Courtney, and how she hiked and enjoyed the outdoors.

Yes, your daughter may have to stay on the ground if she has that much swelling and will need the steroid that always goes along with that diagnosis.

The fresh air should do her some good, but the boyfriend needs some education as to what is now happening. He needs to know what to do in case of seizure.

Praying along with you that the WBR will put thse mets in their place. She very likely will have some spots treated individually by radiosurgery in the next few months if not sooner.