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Old 10-12-2009, 11:15 AM   #37
Sheila
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Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Re: Insurance Company Does Not Want to approve TYKERB

Appeal denied. Joe, I dont qualify for the trial in Chicago at Univ of Chicago...more than 2 prior chemos. My onc. was working on the appeal until late Friday, then today, denied again. I contacted Cancer Legal Resource Center, they are looking into it. Called Tykerb cares and still no response, so back to square one, and now 1 month since any Rx except Herceptin. It wouldn't bother me so much but the lump in the side of my neck truly is growing by the day, and it pulls and hurts to turn my head.
On the bright side, my little Grandaughter Jasmine, who many of you may remember, is going to Disney World in 6 days as her wish from Make a Wish Foundation.... she will be 13 in 2 weeks...so funny that she is very tiny and wears a size 4-5 in childrens, but her head is very small and we had to get a newborn winter hat to fit her tiny head (cranial synastosis)...and it had to be one that looked like something a teenager would wear! When she was nominated for Make A Wish by her Dr., they asked her if she could go on a vacation anywhere in the world, where would she want to go...her answer was to Grandma Cocoa's house..( that is what she calls me)..needless to say, that made my day, my year, my life! She is truly proof that miracles do happen!
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Hugs & Blessings
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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