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07-12-2009, 04:01 PM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 556
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Scan results
I got my PET/CT scan results and the mediastinal nodes are acting up again, two nodes in hilar region and one in subcarinal region. I have been on Herceptin and Tykerb for 10 months. It is really frustrating that my her2 was not controlled by two targeted therapies combined. I am discontinuing Tykerb and starting Navelbine with Herceptin. This is my third time on Navelbine in 2 years. Each time I used it for 3 months and stopped when the scans showed NED.
I am just wondering if there is anyway to treat it locally without using chemo because it keeps recurring in the same place.
I am determined to beat this and manage till my kids grow older. They are 8 and 4 years now.
Thanks,
Julie
__________________
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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07-12-2009, 08:34 PM
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#2
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Julie,
I am sorry that the nodes are acting up again. I feel for you since I have young children also. I am believing that we will both be around to raise them.
I not sure where the nodes are located but can they be treated with radiation or surgery?
Sending my warm wishes and prayers.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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07-12-2009, 09:04 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Dear Julie,
I am praying very hard for you and also believe that you will be around to raise your kids. I can totally relate to the concern since my kids are 6 and 5 years old.
God bless you with lasting NED status soon.
hugs,
shobha
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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07-13-2009, 06:23 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Julie
The mediastinal nodes seem so very hard to keep in line...as are the supraclavicular nodes....this has been my battle for 6 yearsnow, with various chemos...seems to knock them back for awhile and then they rear their heads again....you are lucky the Navelbine works for you...I am on it right now with Herceptin and it is not working ...I did get some good response from Avastin with Taxol/Herceptin, but even that was short lasting...I am still looking for the golden bullet...hope you find yours too!
__________________
"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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07-13-2009, 09:54 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Julie,
I will be praying for you.
Amelia
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07-13-2009, 12:33 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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T-dm1
There are new TDM1 trials opening up in the next few weeks. Can your oncologists check into them. I know that one will be at the Dana Farber.
Best regards,
Barbara H.
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07-13-2009, 04:42 PM
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#7
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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sending positive thoughts and prayers!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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07-13-2009, 08:54 PM
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#8
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Julie, sending you a hug as you sort out your game plan. I have faith you will do what is right for 'Julie'. Stay strong and keep the faith.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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