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07-18-2008, 10:48 AM
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#1
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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I try to always go to sleep at night feeling the gratitude and peace of being NED at the present and also knowing that my family is all doing well. Having had to go through that emotional roller coaster ride in the past has given me the appreciation of what is good right now.
__________________
*** 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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07-18-2008, 10:58 AM
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#2
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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Hi to you all, and thank you for the kind words on the poem.
I just returned to Denver,from LA after seeing Dr Slamon. He gave me wonderful news. He said that in the past two years there have been so many new developments that things are looking very positive for those of us with "Cancer". We need to look at things in a much different way now! He is extremely nice and down to earth, so when He looked me in the eyes with a "BEAUTIFUL" smile and said go off Herceptin, and Aromasin, get rid of some of those side effects (could not promise all would go away) and live your life. There was no way to not believe him. He feels our oncologists out there need to know from the findings the past two years that we have every opportunity to (as he told me) "not die of breast cancer but from something else" ... my husband said like being hit by a bus and he said yes. So I am going to watch carefully for that bus and hopefully as I clean out the meds I will also be able to leave behind the meds I take for those meds and get my body back to a happy one!
Hugs and love to you all...
Marily truly NED and loveing it : )
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07-18-2008, 11:22 AM
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#3
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Marily,
Wow, what an awesome visit you had with Dr. Slamon!! I can just imagine the joy you must be feeling!!! From what I have heard he is the best in the area of oncology and herceptin, so to hear those words from him to you makes it absolutely PERFECT!
hugs and smiles to you.....way to go...
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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07-18-2008, 11:37 AM
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#4
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Senior Member
Join Date: Aug 2007
Location: Stayton, Oregon
Posts: 69
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Marily,
I am stunned he told you to go off Herceptin and Aromasin and get rid of of the pesky side effects and live your life. Were your side effects bad enough that they were interfering with your life? I am on Arimidex that makes every joint I have hurt. I am already finished with Herceptin. Just curious why he took you off your AI.
__________________
Dx 7-21-05
1.7 cm invasive ductal carcinoma
Her2 +3 strongly positive
micromet in sentinel node
Sept.05 Lt.lumpectomy/bilat.reduction
Oct.05 4 rounds of AC/12 rounds of Taxol with Herceptin
Radiation 5 weeks
Herceptin only until Jan.07
Started Femara-stopped
Started Aromisin-stopped
Currently on Arimidex with a great deal of pain
Stopped Arimidex
Taking Tamoxifen
Karen
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07-19-2008, 09:50 AM
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#5
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Senior Member
Join Date: Aug 2007
Location: Stayton, Oregon
Posts: 69
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Great explanation
Marily,
Thanks for the wonderful explanation. Many happy NED days ahead are in store for you. Love, NanaKaren
__________________
Dx 7-21-05
1.7 cm invasive ductal carcinoma
Her2 +3 strongly positive
micromet in sentinel node
Sept.05 Lt.lumpectomy/bilat.reduction
Oct.05 4 rounds of AC/12 rounds of Taxol with Herceptin
Radiation 5 weeks
Herceptin only until Jan.07
Started Femara-stopped
Started Aromisin-stopped
Currently on Arimidex with a great deal of pain
Stopped Arimidex
Taking Tamoxifen
Karen
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07-19-2008, 07:32 PM
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#6
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Member
Join Date: Oct 2006
Posts: 23
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Hi everyone,
At Jackie's suggestion I am including my update here.
I was dx'd in Nov '02 and enrolled in the BCIRG 006 trial for using Herceptin as a frontline treatment for early Her2 pos breast cancer.
I have now passed the 5 1/2 year mark and are NED and want you all to know how incredibly grateful I am that I was dx'd when this trial was open and that I was lucky enough to be randomised into an arm that received herceptin as I have no doubt that it is why I am NED today.
Love and hugs to all
__________________
Dx Nov 2002 Her2 +++ Er+ 44 years of age (Pre menopausal)
Lumpectomy 1st Dec '02
Stage II 2cm tumor.. Clean margins
Her2 +++ Er pos
1 x Pos Node of 14
Entered BCIRG 006 Trial Jan '03
4 x AC 4 x Taxotere 30 Rads
1 year Herceptin
5 years Arimadex
Total hysterectomy (came out of chemopause) March '04
2012 - Still NED
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07-19-2008, 10:25 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 46
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Me Too
Hi, this is Gabrielle.
I'm in my 9th year and I remember how I clung to survivor stories when I was first diagnosed.
My story: Dx at age 44, Stage 3a, 9 infected nodes out of 21, Her2/Neu, infiltating ductal, 5.2 cm stuck to the chest wall, left breast.
Treatment: 4 rounds of adriamycin/cytoxin; 4 rounds of taxotere, 25 hits of radiation, 52 weekly herceptins. Mastectomy; prophylactic mastectomy on the healthy breast 9 mos after diagnosis; prophylactic hysterectomy about 1.5 years after dx.
I have no idea why I survived and friends didn't. This disease is humbling and mysterious and I don't have all the answers. I did, as noted, treat it very aggressively. My kids were 12 and 9 at the time and I was driven by a primal maternal need to survive.
I took 5 months off for chemo but after that, continued to work (I'm a CPA). This year, I started studies for my doctorate.
I hope I don't offend those who have done everything I did and more, but didn't have the luck I've had. It's occurred to me that my posts might make others who have recurred, sad, in that that their stories haven't had the happy ending mine has had. To me, the true warriors are our sisters who have passed; I have had a healthy dose of survivors' guilt from time to time.
But for those who are newly diagnosed, I hope you are energized and hopeful as a result of my personal story. In early 2000, I was told by my doctor that without chemo, I would be dead in 2 years. I took every med offered and here I am , 9 years later, hopeful and making continual plans for the future. My children are turning 21 and 18 this summer. My prayers were answered, to see them raised. It's all gravy from here on out.
Hugs and prayers for all of you,
-Gabrielle
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07-24-2008, 10:44 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
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4.5 years and counting...
I haven't been on this site in quite some time. When I was first diagnosed, I was here every day. So remember, for every post here, there are 20 other women who are long term NED but just don't frequent the site anymore.
4 1/2 years out from a stage 3C dx....and fortunately (praise God) was randomized to receive herceptin in the BCIRG 006 trial.
__________________
Rose
Dx'd 1/04 at 33, while 33 weeks pregnant
Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7 (IDC)/7.6 (FSH), 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)
Treatment: A/C *4, T *4, 1 year of herceptin (BCIRG 006), mastectomy, rads (7 weeks), zoladex (5 years) with tamoxifen (2 years)/aromisin (3 years), bilateral SGAP summer 05 at NOLA
Oops, retested tumor and I guess I'm er/pr- after all.
Stopped all hormonal tx 10/07. Periods resumed 6/08. Bye bye hot flashes!!!!
http://www.edrie.com/kopecky
*~VISIT OUR FAMILY!~*
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07-24-2008, 11:29 PM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Welcome back, Rose. And thanks for the 20/1 analysis. That means a lot to me.
Your travelling pictures look great! Thanks for sharing.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 07-30-2008 at 03:52 PM..
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09-17-2008, 12:34 PM
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#10
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Senior Member
Join Date: Jul 2006
Posts: 59
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THX Sassy! Needed this today ... 5 women on my other site were either newly diagnosed or told they have advancing disease yesterday...so I am very lucky to be able to say...
3 years and nearly 10 months since DX...NED!
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09-17-2008, 12:56 PM
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#11
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thanks for all your posts. There are times that coming to this site to hear others experiences is all that get me through the day.
I have 3 more TCH treatments; and hopefully, my scans will continue to show me NED. I have only been NED since 4-16-08.
Amelia
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09-17-2008, 01:01 PM
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#12
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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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Amelia
Here is a giant hug for you. Sending special thoughts that are sprinkled with lots of love>>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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09-17-2008, 01:03 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thank you Marie. I needed that today. I am getting ready to go teach a Homebound student.
I hope you and the Mighty Oak are doing well. Have a great vacation.
Amelia
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09-17-2008, 02:37 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Somehow, I was sure I had put in my 2 cents worth here. Obviously not ...
Had a very busy summer and still going strong.
My fight with this disease began in fall of 2000 - just 8 years ago. Wish I could say 8 years NED and ditch the Herceptin (just got it again today) like Marily.
But I CAN say that I am just a little over SIX years since declared NED after becoming Stage IV. 
I fortunately do not have the side effects that Marily mentioned, but that does not mean that I might not get to the same point after so many years on Herceptin.
Going forward with new information from those who are just a little ahead of me. Really appreciate the sharing that takes place here!
__________________
"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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09-17-2008, 06:41 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: Carmel, Indiana
Posts: 98
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I am approaching my one year anniversary of diagnosis - wow, so much has happened this year and I am so grateful and so proud of myself for all I have endured! My daughter's 10th birthday is today and I am so grateful to be here to celebrate it! My last Herceptin treatment is next week. Won't miss the chemo place one bit but will miss the security blanket of having an ongoing treatment.
I am hopeful and always am happy to see others NED.
Love,
Beth
__________________
DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08
Married 16 years!
3 kids - daughter (10), twin sons (7)
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09-18-2008, 12:17 PM
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#16
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Senior Member
Join Date: Jul 2006
Posts: 59
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Marily, may I share this poem on other sites?
Thank you!Marcia
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09-18-2008, 06:49 PM
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#17
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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I am hoping this quick note of yet another 6 months of NED provides some hope and inspiration. I certainly read (and reread) these notes and am always filled with hope for the future.
I JUST received the all clear from the results of my first PET scan after 6 months out of Chemo. So far so good.....
I too am thrilled to have the opportunity to participate in life. I am headed out to buy that ski pass (I live in Colorado) for the upcoming season!!!
__________________
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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09-19-2008, 12:35 PM
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#18
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Hi all,
Had my annual mammo today, followed by a check-up by my BC surgeon: All is well. I'm still dancing with NED and I'm growing more and more attached to him. It will be 5 years next January.
Love
Lien
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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09-19-2008, 12:40 PM
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#19
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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While I cannot brag about me, I have a friend who be 4 years out next month NED - she was stage 4 at diagnosis including her liver and several mets and she is doing well.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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09-19-2008, 01:10 PM
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#20
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Dear Barb,
But you can brag about you! You are still here, 5 years after your initial diagnosis. You are hugging a gorgeous puppy in your picture and you are connecting with us over the internet! You are part of our lives and our thoughts. You give hope to others who were just diagnosed. You are fighting the beast. You are one of us.
Hugs
Lien
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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