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Old 08-12-2009, 05:33 PM   #2
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: brain mets - loss continues

Hezzy,

There are other oncologists who may be more on the cutting edge so to speak - and who would at least give you a better answer than "you shouldn't even bother". How ironic he also thinks YOU're not being positive! He certainly isn't helping any.

He may be saying that because he believes the radiation will work, and see your desire to know all your options as "giving up" on the radiation before you even know the results. Either way, he is not correct in the statement "nothing crosses the BBB".

You should stay positive - radiation can be very effective and may work very well for you. I'm not an expert of course, but I'd have to agree you wouldn't contemplate surgery before knowing if the radiation was successful.

Given your location, you may not have a lot of options locally for top notch oncologists - but you really should get a second (or third or whatever!) opinion at a comprehensive cancer center, preferably with a doctor who specializes in breast cancer or brain mets from that. Possibly U of I in Champaign, but definitely Chicago or Indianapolis have outstanding docs specializing in these areas and on the cutting edge. I know Chicago or Indianapolis are a bit of a trip for you but are definitely "within reach" for a consultation. You may still be able to implement treatment recommendations locally (although its best when your oncologist is willing to play nicely).

It's super important that you trust the people on your team...and don't forget, it IS YOUR team. You deserve to fill it with people you believe are fighting for you and accept you as an active participant in your treatment if that is what you want.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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