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StephN · 04-17-2008, 02:11 PM

Very timely, Sarah.

At the conference this week an Italian researcher stopped at our table to see what we were all about. Some of the people thought we were there to raise funds.

We explained we were non-profit, run by volunteers. That is a novel concept to many! We are only trying to raise awareness and educate.

The Italian woman told us that when a drug such as Herceptin becomes a standard of care there, it is mandatory that a patient is offered it no matter who they are or where they live. The government pays and for Herceptin the cost is about $1,200 (but she may have meant Euros).

My insurance is billed about $6,000 for my Herceptin alone each treatment. Some of you pay more.

An interesting woman from Argentina talked to us about the HER2 testing also being standard in that country now. Joe and I were recalling that in 2003 in San Antonio the oncologists from other countries (such as Mexico, India) were telling us that there was NO MONEY to pay for tumor testing. No wonder a cancer diagnosis was a death sentence.

Nice to see that turning around.

04-17-2008, 02:11 PM	#2
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Very timely, Sarah. At the conference this week an Italian researcher stopped at our table to see what we were all about. Some of the people thought we were there to raise funds. We explained we were non-profit, run by volunteers. That is a novel concept to many! We are only trying to raise awareness and educate. The Italian woman told us that when a drug such as Herceptin becomes a standard of care there, it is mandatory that a patient is offered it no matter who they are or where they live. The government pays and for Herceptin the cost is about $1,200 (but she may have meant Euros). My insurance is billed about $6,000 for my Herceptin alone each treatment. Some of you pay more. An interesting woman from Argentina talked to us about the HER2 testing also being standard in that country now. Joe and I were recalling that in 2003 in San Antonio the oncologists from other countries (such as Mexico, India) were telling us that there was NO MONEY to pay for tumor testing. No wonder a cancer diagnosis was a death sentence. Nice to see that turning around. __________________ "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.