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The treatment dilema, no T-DM1
I have waited to post to make sure all bases were covered. I went for the preliminary on the T-DM1 trial here, this was a trila that measured the QT wave in the heart before and while on T-DM1, and if you progressed, Pertuzamab was added. After a 8+ hour day in Decatur, I found out my QT wave was borderline of even being accepted, my EKG showed a possible Left Branch Bundle Block, which they of course have attributed to chemo damage of the heart, I was told I don't need herceptin as it is probably doing nothing for me, and I felt very uneasy with the whole setup. I was number 2 in the trial that has been open since August, out of 50 applicants. After all of that, I did not have that warm fuzzy feeling about going here for treatment. I am one who believes the oncologist is a vital part of treatment and healing, and if the synergy is not there, you are missing part of the treatment plan.
I did call Loyola again, as their trial is different, but they are only taking 2 patients (both from Loyola) for the heavily treated metastatic and the rest will be newly diagnosed metastatic. They are keeping my info so if they are allowed to add more, i will be called....kinda like being on the "will call" list.
In the meantime, I have begun the Tykerb regimen...I was really beginning to have lots of discomfort in my left chest side and axilla, probably the sign of things growing with no chemo. I took the advice of the Tykerb Divas on this board, and started with 3 tabs a day, they 4 and am almost ready to start the 5 tabs...so far so good, no diarrhea or any problems...it made sense rather than to start with the 5 tab dose and have to cut back...
I will see my oncologist tomorrow, and keeping my fingers crossed that the Tykerb Diva route will stabilize me until the T-DM1 fairy comes to get me....
Thank you for all your prayers and thoughts, this has been a rough time....in my heart, this seems the right path at this time.....at least until i know I can qualify for the T-DM1.....now to see a cardiologist, and make sure everything is OK with the heart.
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"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
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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