HER2 Support Group Forums - View Single Post - After Whole Brain Radiation -now what?

StephN · 01-29-2009, 12:22 PM

Hi kathy -
Thanks for the report.
It is IMPERATIVE that you have followup scans. Brain mets are something that need following whether they are dying or to check for any new ones.

We have people on this site who have had WBR that DID have new mets later on.

In my case I did not have WBR since I had just the two tumors and never any others. It is my radiation oncologist who orders my brain followups and I go see him for the results. Don't let him cut you loose like that.
And he sould NOT have done it.

You should go back to the rad onc and tell him that you wish to have the followup he recommended and have HIM review it with you.

Hope your aftereffects are subsiding as you get further along healing. I see no reason not to take your CoQ10 now. I was told it is good for brain healing!

Remember - Spring is coming!

01-29-2009, 12:22 PM	#2
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Hi kathy - Thanks for the report. It is IMPERATIVE that you have followup scans. Brain mets are something that need following whether they are dying or to check for any new ones. We have people on this site who have had WBR that DID have new mets later on. In my case I did not have WBR since I had just the two tumors and never any others. It is my radiation oncologist who orders my brain followups and I go see him for the results. Don't let him cut you loose like that. And he sould NOT have done it. You should go back to the rad onc and tell him that you wish to have the followup he recommended and have HIM review it with you. Hope your aftereffects are subsiding as you get further along healing. I see no reason not to take your CoQ10 now. I was told it is good for brain healing! Remember - Spring is coming! __________________ "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.