Seeking Whole Brain Radiation Info
 

Hey, all. As some of you know, I was diagnosed with about 16 small brain mets in February, and had cyberknife to the biggest one in March. My next scan showed reduction in all of them. (I'm also on Haloven and Tykerb for lung mets.) New brain MRI this week shows progression, and new lesion, so doc wants me to do whole brain radiation, starting Aug. 1. I am scared and wary of WBR, but don't really think there's much of an alternative. Wondering if any of you have had experience with WBR, and what you think I should do. I'm terrified of getting symptoms of the brain mets, but equally terrified of side effects of WBR. Everything I read on the internet seems to say don't do WBR. Any advice, wisdom, experience would be very welcome. Thank you, thank you!

Re: Seeking Whole Brain Radiation Info
 

SRS Cyberknife and Gamma Knife can be used to treat multiple brain mets. My wife had 11 treated in one sitting and they have all gone now. She has had 20 treated over the back 30 months and only one of them is still showing enhancement. As long as any one lesion is smaller then 3cm and the total tumour burden is less then 20cc it can be done. People are routinely having over 20 lesions treated in a single session now. I have read of 29 in a single session!

It can be repeated if new lesions pop up and the side effects are minimal. The worst part is the frame fitting for Gamma Knife.

I would seek a second opinion.

Hope this helps.

Re: Seeking Whole Brain Radiation Info
 

Ugh so sorry to read this - anything brain is so terrifying. I would do a clinical trial for brain mets before I'd do WBR. That tykerb helped the mets at first is good. Also, what about intrathecal Herceptin? There is a HER2 facebook group and you could also post there for info.

I know that TUCATINIB crosses the BBB, it's the HER2CLIMB trial. Will post more as I find it...
Stay focused :)

Re: Seeking Whole Brain Radiation Info
 

Thanks, all. I've decided to hold off on WBR for now. It just doesn't feel right for me, since I am currently asymptomatic. Looking into tucatinib for compassionate use. Lung scan on Monday, then talk with onc. If lungs are also progressing, which I suspect, as my cough is getting worse, then we have to start from scratch. Currently on Haloven and Tykerb, which worked for about 7 months.
My hospital will not cyberknife more than 2-3 lesions. Certainly not 16-18. So that's not an option. Though, if one gets big, they can go back and zap it.

Flori, how are you? I think about you a lot!

Re: Seeking Whole Brain Radiation Info
 

The chemos Xeloda and Temodor also cross the bbb. Cisplatin and carboplatin MIGHT cross over too.

Re: Seeking Whole Brain Radiation Info
 

Hi Katherine,
I don't know where you are so I don't know if this will be helpful, but Google Maryland Proton Treatment Center. They use a technique called Pencil Beam Therapy which is focused and not nearly as harmful to surrounding tissues. If you are too far from Baltimore for this to be an option, maybe they could assist you in finding the treatment closer to you.
Love, Ana