Nervious about brain met treatment decisions

Joe · 11-07-2007, 04:11 AM

John,

I agree with you. Use WBR only as a last resort as its side effects are debilitating. I might also suggest talking with either Dr. Nancy Lin or Dr. Eric Winer, both at Dana Farber. They have extensive experience with CNS tumors are are currently doing research with Tykerb, a drug that also crosses the BBB in combination with Gamma Knife.

I am hoping that PattyZ will also answer your post as she has a long history of treating brain mets with Gamma Knife and various chemos.

WBR is a serious decision and I applaud you for doing the research before making your decision.

Regards
Joe

tousled1 · 11-07-2007, 05:54 AM

John,

I would have to hold off on WBR if I were you. To me that would be a last resort. I would discuss the possibility of either CyberKnife or GammaKnife for the brain mets first. You may also wish to talk with BHutch who has been on T/X for brain mets.

trixkit · 11-07-2007, 06:31 AM

Thanks for the input.

I've been searching the board day and night, have read most of pattyz's posts and others. Her case looked similar as she had many mets.

My wife is a mess, she just wants to follow the Dr's marching orders.

The radiologist left the impression that we have to take action now, I'd like to pursue other options, but don't want to wait if that will make the situation worse.

I'll try contacting those folks at Dana Faber.

Tykerb is currently not an option as her LFEV went down to 35 in June while on Herceptin, we are holding out hope that this will rebound

Thanks
John

pattyz · 11-08-2007, 11:58 AM

John,
I'm so very glad to see (however late I might be) that you've had these great replies. And, glad that you went directly to the PM to reach me...

Other than what I've said already, the fact that your wife has two lesions that appear to be bleeding really worries me as to what will be recommended...

A combination of surgical and focalized radiation may be an option, if the problematic lesions are accessible. I've not had nor seen any one else with this particular problem before.

As you may have gleaned, WBR does not have that great of a 'duratation' if indeed successful in the first place. That was one (two) of my reasons for rejecting it, no matter what scare was put to me.

I went in with as much knowledge as I could, listened carefully, stated my wishes, then said: "I'd rather wait and see" for the WBR. I did have a hard time getting what I wanted and was not treated well because of it...

I much preferred the CyberKnife over the other focalized, simply because it saved me from that damned screwed on headframe. Three times of that was way enough. Once I could have lived with!

As for chemos, as I told you, my success with Xeloda/Temodar has been very good. And the Xeloda might address your wife's remaining breast tumor, too. Who knows in advance? No one.

I believe after a time her heart should recover and the Tykerb could be looked at then.

we're all pulling for you,
patty