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01-29-2009, 03:21 PM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 556
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Mediastinal nodes
Anybody has mets to Mediastinal nodes? If so were they gone with chemo treatment and never came back? I have been fighting the mets to mediastinal nodes since Aug07. I used Navelbine two times so far, once for 3 months and another for 4 months. Each time I reached NED and within 4 months the mets returned again. This time I am also on Tykerb with Herceptin. But Tykerb doesn't seem to help.
I want to avoid using chemo continuously if possible. Are there any other options? Anybody used CyberKnife for mediastinal nodes?
Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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01-29-2009, 06:40 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Someone has fought this very battle.....sorry, my brain won't bring up the name, she will surely see this and respond. I'll be thinking very positive thought for you! ma
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MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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01-30-2009, 04:56 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Julie
I have been fighting those and supraclavicular nodes (collarbone area)) for 5 years...after almost 2 years of Taxol and herceptin continuously, they show up with necrosis, but they just don't go away, it seems a treatment "holds them" for a while, then another is used to take over control...I have been in constant chemo 4 years....I wish they COULD get rid of them...on the good side, it is keeping it in that area for 4 years and no distant mets..
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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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01-30-2009, 11:38 AM
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#4
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Senior Member
Join Date: Dec 2006
Posts: 415
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I've had 2 recurrences to supraclav nodes & 2 to mediastinal nodes.
The 2 supraclav node recurrences were treated w/ 6 cycles of G+H, NED for 9mos, the 1st time, then 7weeks of rads for the 2nd recurrence.
The mediastinal/hilar node recurrence showed up on a scan immediately after finishing rads for the supraclav,
so we're doing Gemzar+Herceptin. The good news is scans show NED after only 3 cycles, so now I just have to finish up the protocol -3 more cycles- then back to Herceptin solo.
I'm hoping the extra "wash" of chemo through my system will douse whatever may have been left sitting around the supraclav, and anywhere else in my body, & will keep NED around for a longlongtime.
(I did ask my rad.onc if there's anything she could do about the mediastinal nodes & she said yes, but let chemo do its job 1st. I don't have any add'l info, but maybe your docs can help you with a plan to treat with rads & give you a well deserved break from chemo!)
Keep the Faith~
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