Brain mets...a plan, (T/X now, rads later?)

[hutchibk]

9 AM today: My oncs started leaning back towards WBR over the weekend, (much to my dismay) due to deeper consideration of my brain mets. I thought we were going to do targeted Linac of the 3 spots and add Tykerb/Xeloda. But, the rads onc says that that is not the way he would go after further consideration, and he said that it is a really gray area with no easy answers. He would love for targeted rads to be an easy answer, but he doesn't believe that it is that easy. He believes that my brain is more than likely "peppered" with other little punctate spots that are beneath MRI detection just now. My med onc agrees with this assessment and they both think that WBR with Tykerb/Xeloda is the most prudent way to approach it...

Noon:30 PM today: I called the rads onc and expressed my fear about WBR and the long term cognitive effects. He said he understood. Then in convo I wondered out loud if we would lose any ground by waiting a few weeks (6-8 weeks) and getting started on the Tykerb/Xeloda first...then MRI again to see what it might gain us. He started getting on board with the idea, saying that he didn't expect that it would lose us any ground and that he expected in that amount of time for the 3 mets to only grow at most by about 10%, if they grow at all. And that that amount of time might be able to reveal to us whether or not more punctated spots start to show up. I started to feel really good about the idea and called the med onc to talk about it. He is leery of the idea at first, worries that we could lose ground with the brain mets, and is not ready to be too confident about Tykerb just yet, as it is so new... he is cautious, but is willing to give this plan a go, and says he would be surprised, yet pleasantly so, if we see some shrinkage from the T/X - as well as no new spots by that time. He is reluctantly on board.

9:00 PM tonight: I am all over the map about this. One minute I love the idea of giving it some time. The next minute I feel as if I might be making a HUGE mistake.

Oh, and my PET last week revealed that we have had slight worsening (while on taxol/herceptin) of the other mets in my mediastinal and neck, and that there is a new small met showing in the chest.

Yuck, yikes and HELP. I am at such a loss here. I thought I had a reasonable idea, and now I am second guessing everything beyond belief. I suppose I can live with it for a week or two, get into the Tykerb/Xeloda routine, and in the meantime do some more reasearch. Maybe see a neuro-oncologist? I am not too far from MD Anderson, but they don't do second opinions. They make you sign off from previous docs and sign on with them. I'm not willing to do that.

Any thoughts or ideas from you lovely ladies? Did any of you hear a similar theory from your docs? Is targeted radiation in this circumstance just a never-ending game of wack-a-mole? does WBR really work and does anyone ever escape the cognitive problems?