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01-04-2012, 07:21 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Common Bond & Our Genetic Testing
As many of you know, my Mother had breast cancer, as well as a maternal cousin, myself, my youngest sister, and now a paternal cousin. My mother passed away from a new primary liver cancer a year ago. Needless to say, there has been a whole lot of testing going on, to see if there is a common link or gene....here are the results...
Mom - ER+ PR +, Her2 testing not done 24 yrs ago
Me - ER- PR- , Her2 +++ BRCA 1 & 2 Neg
M. Cousin - ER+, PR+, Her2 not done 17 years ago.
Sister - Triple Neg tumor and Triple Positive Tumor, BRCA 1 & 2 Neg
P. Cousin Triple Positive tumors (both sides) BRCA 1 & 2 NEG
So, we share some link, just unknown at this time....on the bright side, my sister finished her chemo last week and now is on Herceptin solo for the next 9 months...we were able to go together and get treated together her last chemo...which was special as she is every 3 weeks and me every 2....I am so happy she has completed her chemo and with very little side effects...she worked the entire time....must be her youth!
__________________
"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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01-04-2012, 09:57 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Common Bond & Our Genetic Testing
Sheila
Are you suspecting that her 2 is the common factor even though I know years ago they didn't test? Most of your other relatives seem to be ER+ and PR+ except you, who like me are negative .
My understanding from Dr Slamon lectures is that her 2 is NOT genetically transmitted, is this your understanding as well?
These things are never simple.
Always good to hear from you.
Ellie
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01-04-2012, 11:32 AM
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#3
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: Common Bond & Our Genetic Testing
Interesting.
My maternal grandmother was dx with breast cancer at age 82 - triple neg.
I was dx with triple pos. BRCA 1 & 2, negative.
One of my maternal aunts was just dx with triple pos. no BRCA testing as of yet.
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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01-04-2012, 03:45 PM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Common Bond & Our Genetic Testing
Sheila,
So happy to hear that your sister is done with chemo and now only on Herceptin. This is very good news.
Thank you for posting the picture of you and your sister. It is very moving. I look forward to the day when breast cancer is only talked about in medical history books. Best, karen
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01-05-2012, 08:56 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: Common Bond & Our Genetic Testing
Sheila, so glad your sister is done with regular chemo. I hope the year has flown by for her!!
I'll add what I know about our genetics..
Mom 1990 Er/Pr +
1996 Er/Pr + Her2-
2000 mets ?? BRCA 3 panel - in 2005
Aunts (3) unknown hormone and Her 2(no one could remember( or wanted to  ?. 1972-2003) no BRCA testing
Cousin 2 separate primary's (BRCA 1)
Inherited mutation from her Dads side of family
Gentle loving hugs to you!
Marcia
Me 2002 tested 3 panel negative
DX 2004 Er/Pr + Her2+++
2005 retested, full sequencing , Brca- ( BART not available until 2006 and $700 out of pocket 
Last edited by Soccermom; 01-05-2012 at 04:46 PM..
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01-05-2012, 02:14 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Common Bond & Our Genetic Testing
Me -ER +/PR-, Her 2+++
Mom - ER+/PR+, Her2 neg
Aunt 1 - was not hormone positive but Her2 not done then
Aunt 2 - was on tamoxifen so must have been hormone positive but Her2 not done then
Cousin - ER+/PR-, Her2 neg
Sister - dcis only but highly hormone positive - did not run Her2 on dcis
Aunt 1 and Aunt 2 never got tested. Mom and Sister were BRCA and Bart tested negative. I only was BRCA negative tested - want to do BART to be sure. Cousin was BRCA tested negative. Cousin, sister, mom and me all started out with non-existant Vitamin D levels.
Aunt 1 died from the disease. Aunt 2 died from old age (87). Everybody else is alive and kickin'
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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