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Old 04-29-2009, 03:40 PM   #1
Sheila
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Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Verdict is: Good Bad and Ugly

After 2 days of tests, scopes etc, the verdict is in. My hoarseness is due to a paralyzed vocal cord, which the CT confirmed. The paralyzed vocal cord and coughing is due to irritation of the nerve leading to the vocal cord, caused by the lymph nodes in my neck enlarging and pressing on the nerve....kinda like the hip bones connected to the knee bone, the knee bones connected......I have enlargement in the supraclavicular nodes, the mediastinal nodes, and a conglomeration of nodes in the aorticopulmonary window. This would be the bad. On the good side, the precarinal, subcarinal and hilar nodes have shrunk and show necrosis as have the left axillary nodes. This I guess would be the good. They also noted a 3mm cyst on my left hepatic lobe...to small to characterize.
The ugly is that I DO NOT qualify for the phase 3 trials of T-DM1, due to previous treatment with Xeloda. I am always a day late and a dollar short in the chemo world.
The new plan is Navelbine and Herceptin, every 2 weeks...she mentioned Doxil, but wasnt willing to forego the Herceptin and refused to give both together.
I will begin the new regime in 2 weeks, so just Herceptin again yesterday. The hope are that the nodes will shrink and my voice will return to normal...if all else fails, surgical intervention is an option. Thank you all for your encouragement and prayers....this has not come at a good time (as if there ever is a good time) with my Mom still having issues...she had 3 units of blood in the past 2 days...I feel as though I am being tested big time with all of this.
Tomorrow will be a much better day.
Thank you for always being there for me and everyone else!
By the way, I have an new friend on the pond behind my house...a egret comes to visit every day...such grace and beauty!
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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

Last edited by Sheila; 04-29-2009 at 03:44 PM..
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