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09-19-2009, 10:24 PM
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#1
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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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~It's Believe51 And I Am Sending Love And Thanks
Just wanted to tell you that I miss the board and having you in my daily life. You are still there though, as I go through my day gentle thoughts of you embrace me. Even during this brief absence I can feel your love and energy.
I am staying centered and focused moving on during this part of the journey. I laugh and carry on through these days like this is not happening. I used to be unsure why and maybe still unsure, but I do not want to miss a thing. I have been hanging out at Facebook trying to move on alone, catching up on the life that I have missed for the last 3 years.
Ed is failing slowly as I watch so very helpless. The remote is no longer a source of freedom it is that of pure frustration. He no longer can use it. The pain is still unbearable and that is with 320mg of Oxicontin, highest dose of Percocet, highest dose of Fentynal, highest dose of Tramadol. I am told that no meds can help at this point and I do believe it. I do not want to see him unconcious either. He mumbles badly and must reach for the words and thoughts that would before come so naturally. He is almost completely deaf so communication, unfortunately, is very slim and difficult. He does talk crazy sometimes but this may be meds may be mets.
It is taking me more energy to stay focused than not but I cannot fall in a funk. I am very sad but really know I am going to be alright afterwards. My friends have proved during this time that they shall carry me through. I have always known this but could not make sense that I would be okay. I am confident.
I have been getting ready to get back to work but Rose will not hire until after Ed's death. She wants me to take care of him and calls to check up and to reassure me I have my own desk and unlimited budget....Flori, let's do some shopping therapy together...lol.
I will not be gone long, I cannot stay focused here right now. I shall return and let you know of the wonderous things I am doing with my life. I will give you the lowdown of the foundation. Of course I will be in charge of breast cancer.
And we have decided that we are not mentioning cancer in the obit...it WILL NOT get the last frapping word!!!!!!!!! What cancer does not understand is that even with the death of my husband I will fight it until the death of myself. I had reservations if I could do this after losing him but that too is a must.
I love you all and know that you understand that in order to function, I need this vacation. Double-edged sword. I miss you and my home. And the best thing about home is the door is always open.
Thanks for loving us this deeply, for this journey would have been a bust.>>Marie
__________________
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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09-19-2009, 11:05 PM
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#2
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie,
Be sure we love you deeply. Thanks for being there and for being such and inspiration to all, thanks for your tireless efforts to fight BC. A prayer for Ed and for you.
Love,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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09-19-2009, 11:33 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Dearest Marie,
Cancer never did stand a chance against you and Ed. Your love story is so much bigger and stronger than it.
I am holding you both close in prayer.
God Bless, my friend.
__________________
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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09-20-2009, 02:56 AM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie,
Love your posting, thanks.
We shall patiently await your return. Meanwhile, do take good care of yourself and know that you and your family are in our prayers.
Jackie07
__________________
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; 09-20-2009 at 02:59 AM..
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09-20-2009, 09:14 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie and Ed, thank you for your post. Stay strong and know that , like TIMEX, we take a licking and keep on ticking!!! Much love to you both. XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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09-20-2009, 09:25 AM
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#6
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Love to you both dear Marie. Ceesun
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09-20-2009, 10:11 AM
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#7
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: ~It's Believe51 And I Am Sending Love And Thanks
I'm glad that you know that our love surrounds you, as those gentle thoughts embrace you. Every day, Marie.....Wishing you comfort and sending you strength and love.
Barb A.
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09-20-2009, 10:13 AM
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#8
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: ~It's Believe51 And I Am Sending Love And Thanks
I feel this is a very metamorphic transition for you, Marie.....and for Ed, too. It reminds me of the silk worms I saw once, two of them sometimes weave themselves into one cocoon. They each begin as two separate beings, then weave themselves into one, and transform together into two new things. Maybe both of you are growing very hard earned wings, in two different ways...but you'll always fly together. Your connection is eternal.
Brighter days are sure to come. That's my perspective.
Love to you, Marie and Ed,
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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09-20-2009, 10:19 AM
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#9
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie,
Thank you for taking the time to post in this difficult time. We are all so concerned for you and Ed - and of course keeping you in our prayers. Take all the time you need. There is no right way to do this and no wrong way to do this. There is only YOUR way to do this. We are always here for you.
Love, Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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09-20-2009, 10:34 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: ~It's Believe51 And I Am Sending Love And Thanks
marie,
yes...the door is always open for you, as is my heart.
Blessings,
Chris
__________________
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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09-20-2009, 11:29 AM
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#11
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Thank you for posting. I think of you and Ed often.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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09-20-2009, 01:51 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie, hugs to you and Ed...you are in my thoughts often 
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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09-20-2009, 02:16 PM
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#13
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Senior Member
Join Date: Sep 2005
Posts: 232
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Love you back Marie and Ed.
Karen W
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09-20-2009, 03:16 PM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Welcome back. If Ed is up to it why don't you see if he will get in a wheelchair if he is not up to walking. Then you both can join us by the campfire for some prayers, food, hugs and fresh air.
Last edited by ElaineM; 09-20-2009 at 03:36 PM..
Reason: addition
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09-20-2009, 03:40 PM
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#15
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie,
It's so very hard going through this stage. just know that you are not alone.
Is Ed's pain from the brain mets? Is he on any steroids or anything that reduces brain swelling from mets? I know you are very on top of everything but just wanted to throw that out there.
thinking of you guys
-Sue
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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09-20-2009, 05:45 PM
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#16
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Big hugs to you Sweet Marie, and Ed.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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09-20-2009, 06:24 PM
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#17
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: ~It's Believe51 And I Am Sending Love And Thanks
I am thinking and praying for you during this most difficult time. I feel your positive energy still coming through with the words you write. You are amazing and I am sending you a big hug.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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09-20-2009, 06:40 PM
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#18
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Marie, You write so eloquently about this (horrible) transition in your life. One cannot imagine the strength.
Thanks for posting today.
Prayers, warm thoughts and many hugs,
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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09-20-2009, 08:48 PM
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#19
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Dear Marie, I know it's been anything but easy. Your one special lady that I admire so much. The love you've shown for Ed is beyond touching. I too felt so helpless watching my Mother slip away...my heart goes out to you. Be good to yourself and know that I am sending you warm healing thoughts & prayers. (Big hugs!)
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-20-2009, 10:02 PM
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#20
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: ~It's Believe51 And I Am Sending Love And Thanks
Unable to help..but getting strength from yours.
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