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StephN · 07-29-2007, 07:03 PM

Dear Nicola -
Sweetie, what an awful time you have had lately.
You pose a lot of questions, but I want to address the brain mets. There is a paper written by Dr. Weiner of Dana Farber on screening and following up brain mets that is on this site somewhere. It is basically a semi-official recommendation for gals like us. That paper was written for the purpose of handing out at one of the big cancer meetings.

Anyone with mets anyplace should have a brain screening annually. Maybe since you had been on Tykerb your onc thought you did not need one. But the fact that you DID progress on Tykerb means that a screening should have been done when you changed treatment plan.

I have had Gamma Knife on two tumors and it is SO easy and painless! I would do it again in a heartbeat. Just search for Gamma Knife and my posts and you should find some detailed posts from the time I had the GK.

Also look for posts by PattyZ, who has posted extensively on brain mets. She did not have WBR, but has had the other treatments more than once.

It is also my understanding that WBR can only be done once - sort of like the radiation we had after our breast surgeries. Hopefully what the WBR has done is to get any little "seedling" mets which are too small to show on the scan. Then if the other mets still need further treatment, that can be done. And remember - it is not an OPEN surgery - just rays which bombard the tumor and the targeting is very precise.

Let us know about your results. There are also other new drugs like Avastin and Abraxane to try.

07-29-2007, 07:03 PM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Nicola - Sweetie, what an awful time you have had lately. You pose a lot of questions, but I want to address the brain mets. There is a paper written by Dr. Weiner of Dana Farber on screening and following up brain mets that is on this site somewhere. It is basically a semi-official recommendation for gals like us. That paper was written for the purpose of handing out at one of the big cancer meetings. Anyone with mets anyplace should have a brain screening annually. Maybe since you had been on Tykerb your onc thought you did not need one. But the fact that you DID progress on Tykerb means that a screening should have been done when you changed treatment plan. I have had Gamma Knife on two tumors and it is SO easy and painless! I would do it again in a heartbeat. Just search for Gamma Knife and my posts and you should find some detailed posts from the time I had the GK. Also look for posts by PattyZ, who has posted extensively on brain mets. She did not have WBR, but has had the other treatments more than once. It is also my understanding that WBR can only be done once - sort of like the radiation we had after our breast surgeries. Hopefully what the WBR has done is to get any little "seedling" mets which are too small to show on the scan. Then if the other mets still need further treatment, that can be done. And remember - it is not an OPEN surgery - just rays which bombard the tumor and the targeting is very precise. Let us know about your results. There are also other new drugs like Avastin and Abraxane to try. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.