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StephN · 06-08-2006, 12:53 PM

Hi Rinaina -
If you are asking the questions about 4 years on Herceptin to me then I can answer.
I was diagnosed PRIOR to the wide adjuvent Herceptin trials, but could have had it if I had known to fight harder for it in 2000.
I became Stage IV not long after the initial chemos and rads. Once a patient shows a need because of disease progression you can stay on Herceptin as long as you are alive and doing well enough. So, I expect to be on it many more years as it is doing the job for me in keeping my disease at bay.

I have very few side effects - leg cramps at night is the main one which also could be a result of the other drugs I took. My MUGA this spring was inthe 60's so looks good. I live in Seattle and my insurance has no problem paying for it.

You are in a better position getting the Herceptin right away before the disease has a chance to do its sneaky thing and spread in spite of the chemos.

06-08-2006, 12:53 PM	#13
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Rinaina - Hi Rinaina - If you are asking the questions about 4 years on Herceptin to me then I can answer. I was diagnosed PRIOR to the wide adjuvent Herceptin trials, but could have had it if I had known to fight harder for it in 2000. I became Stage IV not long after the initial chemos and rads. Once a patient shows a need because of disease progression you can stay on Herceptin as long as you are alive and doing well enough. So, I expect to be on it many more years as it is doing the job for me in keeping my disease at bay. I have very few side effects - leg cramps at night is the main one which also could be a result of the other drugs I took. My MUGA this spring was inthe 60's so looks good. I live in Seattle and my insurance has no problem paying for it. You are in a better position getting the Herceptin right away before the disease has a chance to do its sneaky thing and spread in spite of the chemos. __________________ "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.