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Old 05-06-2009, 05:17 PM   #1
Nancy L
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Location: La Quinta, Ca
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Another woman with neck lymph node mets. I am so sorry you haven't something that works for you. I am curious if they tested your biopsy for ER/PR/HER2. I recently had a biopsy for neck mets and Dr. Dennis Slamon (my oncologist at UCLA) wanted the tissue retested for tumor characteristics inorder to prescribe a protocol. Breast cancer tumors can change characterists when they metastasize. I am currently on Herceptin and Tykerb--see below.

Age 57 at diagnosis---Nothing has happened per the book for me.

11/03 Annual mammo-Stanford/normal. Had mammos every year since age 40 with no indication of cancer.
9/04 Left Nipple Inverted--DX/High Grade BC-Stage IIIC 7x5x3cm tumor with 11 of 11 tested lymph nodes positive for metastatic carcinoma with extranodal spread. ER/PR - Her2neu positive by FISH (HER217Z1 ratio of 4.03). Ki-67 staining was 70%

10/04-4/05 Dose Dense---4 AC; 4 Taxotere/Herceptin; 35 rounds of radiation.

5/05-2/09 Herceptin every 3 weeks; My hair never grew back---told this is rare and caused by Taxol drugs. After much mourning, selected hair replacement system (VirtualReality.com)—expensive but I have better hair than before cancer.

7/08 Lost voice—DX paralyzed rt vocal cord. -. It took 7 mo for modern medicine to find the root cause. None of my doctors suspected malignancy because my BC was on the left side/paralyzed vocal cord was on the right side, and my tumor markers never changed. (Told rare place for breast cancer to reoccur and my tumor doesn’t produce the proteins measured by tumor markers---these markers don’t work for everyone---new news to me; all these years I have had a false sense of security).

2/09 Enlarged Neck lymph node finally detected on CT/PET. Surgery to remove tissue done to confirm tumor characteristics. Breast cancer metastatis was finally diagnosed at UCLA. Neck tumor was ER/PR -; Her2neu highly positive by Fish (her217Z1 ratio of 20.2).

3/10 Continuing Herceptin. Prescribed 4 Tykerb daily. After 6 days, massive hives all over body. Tykerb reduced to 3 tablets daily. So far so good. Will get cat/pet soon since tumor markers don’t work for me.
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Old 05-06-2009, 09:25 PM   #2
Believe51
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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
( Picture Jacquie knocking on her head LOL)


Atlast my daily chuckle, thank you my Goofy friend! One down! The first one always meant alot for us to get past. Now we continue to wait and see, a job we can never get used to and a term that makes me ill. As each treatment passes we are one step closer to finding out if that is our recipe.

My prayers for you is that it is. Go get 'em Girl.>>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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Old 05-07-2009, 04:27 AM   #3
Sheila
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WOS
Hoping that this new treatment is the "magic bullet" and that it continues to be relatively easy to take.....love your Goofy avatar!!!!
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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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Old 05-07-2009, 06:31 AM   #4
WomanofSteel
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Location: New Jersey
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Thank you one and all. My avatar is a balloon Goofy that a gentleman made for me at a kids party. I know I am just a big kid at heart LOL!

In answer to your question Nancy, I am not sure if they retested my neck biopsy for her2 or er status. Right now it is not the nodes that I am so concerned with, although I will inquire about this, I am more concerned with my liver. It seems to be the bane of my existence.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 05-18-2009, 11:29 PM   #5
Believe51
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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
Hey Girl, how are things going? I am keeping you in my thoughts and prayers. I had to miss the DFCI Conference too but will post some of the highlights soon. Talk very soon to you.>>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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Old 05-19-2009, 05:13 AM   #6
WomanofSteel
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Location: New Jersey
Posts: 889
Well, I had my 3rd treatment yesterday and except for occasional fever and chills, this treatment seems tolerable. I was told my counts would drop a lot and that I may not get the 3rd treatment, but they were fine. So next week is just herceptin and and I have a week off from gemzar. I am going for a bronchoscopy on Thurs. to see what's up with my cough. I can't wait till that is over with. Wish me luck!
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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