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StephN · 10-21-2009, 12:35 PM

Dear Chelee -

Looks like you are now going into a pattern of tumor containment and hopefully reduction until T-DM1 has FDA approval, should you still need it.

Is Tykerb very effective against bone mets? Seems I have heard it is not. Please check this or someone else chime in. I think they are working on coming out with a new form of Tykerb that should be more effective for more people.

I have a friend whose cancer returned in 2001 much like yours, with mast scar - chest wall and a few bone mets. This is her story.

She was put on WEEKLY Herceptin, Navelbine and had the old form of Zometa once a month. Femara was added (as Becky suggested), which was later changed to Faslodex, since she was hormone positive.

Friend made it to NED and had another couple of years with the same drugs as prophylactic minus the Navelbine. Her hair did thin, but not to the point of needing a wig.

Cancer eventually did come back in nodes and she is still in the fight doing pretty well right now.

Navelbine with the taxane Taxol plus Herceptin got me to NED and I had much faster moving disease.

Whatever you choose to start with, you know there are more options (maybe NERATINIB, which I don't see mentioned for you yet).

10-21-2009, 12:35 PM	#5
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Decisions...what to do? Chemo related? Dear Chelee - Looks like you are now going into a pattern of tumor containment and hopefully reduction until T-DM1 has FDA approval, should you still need it. Is Tykerb very effective against bone mets? Seems I have heard it is not. Please check this or someone else chime in. I think they are working on coming out with a new form of Tykerb that should be more effective for more people. I have a friend whose cancer returned in 2001 much like yours, with mast scar - chest wall and a few bone mets. This is her story. She was put on WEEKLY Herceptin, Navelbine and had the old form of Zometa once a month. Femara was added (as Becky suggested), which was later changed to Faslodex, since she was hormone positive. Friend made it to NED and had another couple of years with the same drugs as prophylactic minus the Navelbine. Her hair did thin, but not to the point of needing a wig. Cancer eventually did come back in nodes and she is still in the fight doing pretty well right now. Navelbine with the taxane Taxol plus Herceptin got me to NED and I had much faster moving disease. Whatever you choose to start with, you know there are more options (maybe NERATINIB, which I don't see mentioned for you yet). __________________ "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.