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StephN · 11-02-2009, 02:17 PM

Dear Julierene -
Not sure where in Texas you are being treated right now, but it looks like the treatment Lani is suggesting is at Stanford. You may not have the means to go to California. I see no harm in running this possibility past your team. They may know nothing about it, but at least you can bring it to their attention.

You would need an open surgery to remove the larger tumor to send a speciman for testing. These surgeries are normally easy to tolerate and nearly painless. This would depend on the location of that tumor.

Treatment with radioactive iodine should not result in hair loss.

Having had brain mets myself, I know exactly what it feels like to want to get on with something to knock them out. Plus you have this other p53 trial pulling you forward. It is all overwhelming, but we DO have some choices now instead of being railroaded into the old standard treatments.

If I understand correctly you have numerous small specks and one that is about 1/2" in diameter. Seems they want to give WBR as too many to treat individually. Perhaps the larger one should be treated with Gamma knife as well, if you do not take the route Lani is suggesting. This two part treatment by radiosurgery is often done.

Dear Julierene, take a deep breath and try to find a moment of peace. Some people believe that things happen for reasons that are not always clear at the time, so maybe there is a window of opportunity that will open for you. That is my fervent wish for you.

11-02-2009, 02:17 PM	#9
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Waiting on Trail, got Brain Mets... Dear Julierene - Not sure where in Texas you are being treated right now, but it looks like the treatment Lani is suggesting is at Stanford. You may not have the means to go to California. I see no harm in running this possibility past your team. They may know nothing about it, but at least you can bring it to their attention. You would need an open surgery to remove the larger tumor to send a speciman for testing. These surgeries are normally easy to tolerate and nearly painless. This would depend on the location of that tumor. Treatment with radioactive iodine should not result in hair loss. Having had brain mets myself, I know exactly what it feels like to want to get on with something to knock them out. Plus you have this other p53 trial pulling you forward. It is all overwhelming, but we DO have some choices now instead of being railroaded into the old standard treatments. If I understand correctly you have numerous small specks and one that is about 1/2" in diameter. Seems they want to give WBR as too many to treat individually. Perhaps the larger one should be treated with Gamma knife as well, if you do not take the route Lani is suggesting. This two part treatment by radiosurgery is often done. Dear Julierene, take a deep breath and try to find a moment of peace. Some people believe that things happen for reasons that are not always clear at the time, so maybe there is a window of opportunity that will open for you. That is my fervent wish for you. __________________ "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.