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05-28-2008, 10:31 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Life is still good...
Just had my 4 months scan results today..
Few days before the scan i started to be really scarred somewhat I was thinking that things simply have gone so well and that somewhat I will take a bashing soon...(too good to be true kinda of thoughts)
But no my oncologist that I had not seen for more than a year (at which point I thought..here we go..) came to tell me that I am his star patient!
You know the funny thing is: I really love my life now, much much more than before I was stage 4, I love it love it love it... and the thing is I live and plan on a 4 monthly basis not that I am pessimistic but rather my phylosophy is yipeehh got another 4 months of healthy living ahead !!!! thank you thank you thank you..I simply cannot beleive my luck (actually I even play down my contentment to certain people around me I would not want them to get jalous..haha!)
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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05-28-2008, 11:38 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hi Wonderful Woman -
Is that the onc that did not want to give you the Herceptin?? Showed him, I should say! And he even now admits it. Going to Germany and all that for treatment was not due to his encouragement!
You and the Dalai Lama have it right - where there is life, there is hope.
What is your next feat? Going to Kilimanjaro?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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05-28-2008, 12:59 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Hello my lovely lady, my beam of hope..
No he was happy to give me herceptin but did not want me to go to Germany and had not wanted to give me the first scan that allowed me to make the right change to my treatment anyhow he did allow me to have more taxotere that UK protocole allows for so he redeemed himself at the end! But still have to beg to get a scan when I do not speak to him personally anyhow..
Not sure yet what is coming next..I think I want to learn Spanish (being French it is quite easy and I kept on thinking that when doing the pelgrimage) and on the 15 June I will be doing the London-Brighton Bike race (70/80 miles) for charity.. Indeed my primary target is to continue to really get fit and healthy: I want to breeze health!!.. I want people to think that the rumour about this girl categorised as having incurable cancer is obviously very silly!!!
Hey by the way I went to Nottingham last week end to actually see the Dalai Lama in person who was giving teaching lesson to us (a large audience)..he is very wise indeed and has much warmth about him..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 05-28-2008 at 01:03 PM..
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05-28-2008, 02:51 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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What a wonderful post "beans!" I'm so happy your 4 month scans were WONDERFUL but I'm even happier that you've found that true happiness that we all seek. Cancer has a way of teaching that to us, doesn't it?
Sending up prayers of thanks and a gentle hug from me to you.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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05-28-2008, 11:16 PM
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#5
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Fullofbeans, I absolutely LOVED reading this thread you started. It is so full of energy, love of life, gratitude and a very strong spirit!
It is interesting what you wrote about loving life more now then before you were stage 4. I can tell that the experiences you went through from going through stage 4 gave you a multitude of personal rewards and personal growth. It sounds like it opened up a whole wide world of passion for you to love and appreciate.
That to me Sister is what life should be all about.
I am incredibly happy for you.
Maryanne aka Harriecanarie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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05-28-2008, 11:31 PM
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#6
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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PS.....
Please do not, and I repeat, DO NOT downplay your luck and joy with all of us! Your enthusiasm is contagious and it brings joy to me just hearing it!
Wow, that must have been a great experience seeing the Dalai Lama in person!
Another ps here.... I really appreciate hearing how you make your time frames of reference for appreciating good health and life. That's great. I need to keep that in mind myself. Thanks.
The bike race coming up for you sounds awesome!! Good luck and keep us posted on the event!!
Fullofbeans, we have a lot in common. I absolultely love my athletics also. Reading what you are doing makes you my role model. I hope we can both stay friends and keep in contact.
Keep up the good work.
Aloha,
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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05-29-2008, 05:29 AM
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#7
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Thank you so much for sharing your good news.
Your journey has so many inspirational points that are valuable for everyone on this board.
#1. Demanding what is best for you from your Dr.
Congrats on pushing for drugs and scans!!! Camp out in the office for scans if that is what you feel is best for you. When they go to shut the doors and you are still sitting there with magazine in hand they might order a scan just to get you out of the office.
#2. Being Grateful for Each and Every Day
I too am living on the quarterly calendar. I have mixed emotions about living that way but...I do enjoy the little things in life that I used to breeze right past.
So FB....enjoy, continue to love life and of course I wish you many more "quarters" of an active, healthy life with friends and family.
Keep posting the good news!!! We'll be waiting for another good news post in 3 month.
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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05-29-2008, 08:28 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Hey beans,
Life is definitely good! So glad you are doing so well. I know what you mean about living your life quarterly between scans. I used to call it getting a license to breathe for another 4 months!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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05-29-2008, 02:32 PM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Thanks you to all of you for your encouragements it is lovely to hear and yes thank you for reminding me it is ok to write about it here. I actually hesitated because many have had bad news...but then I know that good news reminds me that there is hope of better time when things are not so well..
HarriCanarie off course we can be friend, that has been a bonus to get to know lovely people from various different place in the world..I have to say Hawaii sounds so well uh like it definitely ought to be cancer free  !
Lori, it took me a while to adjust to the 4 months thing too simply because during my entire life it was about getting somewhere..studying, job, mortgage, wanting children bla bla bla.. so it is hard to reprogram yourself because your brain goes there automatically.. It took a while aswell to stop comparing my life with my friends but look at all that I have instead: People know that they should do that but I think that unless you are very wise, it does not come unless well.. you realise how beautiful life just for life itself because the odds are against you...
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 05-29-2008 at 02:44 PM..
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05-29-2008, 02:51 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Fullofbeans,
The ODDS are NOW WITH YOU....just thrilled for you.
Enjoy every second.
Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-29-2008, 06:50 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 182
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Hey Beans, that brings such a smile to face. Keep it up. Yahoooo!
k
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months
Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.
July 2021- start ENHERTU
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05-29-2008, 09:41 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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great post
what a great post beans. (I love your screen name!)
You keep living life to the fullest!
Reminds me of Tim McGraw's song......Live Like You were Dying. I so love that song. (I don't at all think that song is pessimistic. It means exactly what your post is saying, "live and plan on a 4 month basis" but LIVE)
So you keep on Sky Diving, Rocky Mountain Climbing...........
Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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05-29-2008, 11:37 PM
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#13
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Hey Running Buddy...
Fullofbeans...just wanted to share with you that I am also a runner. I am like a "mini-version" of you considering the long runs you go on! I only started running competitively during the past 4 yrs and have run in a couple of 5K, one 10K, and one 10 mile. The 10 mile was a killer for me! The 10K was mean because there were 3 lengthy hills....not to brag, but on that one I came in 3rd for the women's division! I wanted to post a pic of me with my metal, but I can't figure out how to reduce the size of my pic. I have not run in a race since my last surgery. Maybe someday again. Who knows....
Reading your information give me tons of encouragement.
Aloha,
Harieeeecanareeee
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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