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Old 07-13-2012, 05:39 PM   #1
7andcounting
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Re: Pertuzumab not avaliable to stage 4 contrary to what you have heard

No, my onc is still working on this. The way this has been approved is making this very difficult to get. I think people are told it is covered but until they get their EOB's back there is no way to know, unless you have a letter stating that coverage is garunteed before you start.
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Old 07-13-2012, 06:03 PM   #2
Nancy L
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Re: Pertuzumab not avaliable to stage 4 contrary to what you have heard

Is there such a thing as getting a drug like Pertuzumab off label with Medicare? Has anyone ever been successful?
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Old 07-14-2012, 05:33 AM   #3
Sheila
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Re: Pertuzumab not avaliable to stage 4 contrary to what you have heard

Unfortunately, most of us who need this drug as a last ditch effort, need to get it off label. Anyone who has already been treated for metastatic disease would not qualify under the FDA guidelines right now. By it being given off label, the onc. Does not have to give it with chemo, but can give it with Herceptin. I do know that where I receive treatment, 3 different breast oncologists have applied for this for 13 patients total, and so far I am the only one getting it. The insurance company itself can be a go or a no, depending on type of insurance (so unfair). I do know that mine was applied and ordered for MEDICAL NECCESSITY. Still do not have payment...they approved it, but that is no guarantee they will,pay for it and sent me a letter as such. The insurance people at my hospital said it is usually not able to,process off label drugs through medicare, and there are penalties that apply if they do...somifmone is on Medicare, it might need to be requested through secondary insurance if available. Hoping everyone who needs this drug is able to get it, and that it works. So far, I have only had one dose and I see no change....hoping dose #2 will show a big change when given with Herceptin...that is next week
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Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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