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Old 01-12-2006, 09:23 PM   #1
al from Canada
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Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
another inductee into the exclusive brain met club

It has taken 24 hours for me to pull it together enough to post this but....Last night I got a call from our onc telling me that Linda's MRI didn't look too good. I haven't seen the report but a verbal report indicates that she has multiple mets to the brain, the largest being in her cerebellum, which is also causing swelling, thus her vomitting, unsteady gait and possible vision changes.

Moving rapidly forward, Linda is going to McMaster teaching hospital for enrollment in the phase 3 ALLOS radio-sentizing WBR trial on Monday (I think). The only catch is that it is a phase 3 randomized trial which means she has a 50:50 chance of getting the sentisizing drug. http://www.allos.com/

Thank you again to Joe and Christine for posting this.

As you can well imagine, this is a shock to our system but plan B is already in motion: we have moved Linda's Seattle consultation to the middle of Feb. Our regular onc has also to post-rads small molecule supplementation with avastin and in concert with Seattle recommendations. As well, he is offering off-label access to Iressa or tarceva as small molecule alternatives, post rads. I guess I'll be spending some time reading-up on these.

One thing I didn't know (according to our onc) was that WBR pokes holes in the blood-brain barrier which allows some intra-cranial flow of herceptin .

Being in Canada does impose many restrictions on drug availability but we'll work through it. One success we can't lose track of is that for almost 2 years, there has been no spread of mets beyond the liver except for this. With a MUGA of 60; I am considering linda's supplementation regime a success as brain mets are virtually unstoppable, if they decide to go there.

This news really sucks but....I'm hoping that very shortly, this will all be a distant memory of a very bad dream. I wish to thank all who post here, and esp. Joe and Christine for their continued support and committement to irradicate this evil disease.

As always,
Al
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Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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