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Old 05-03-2008, 07:35 AM   #1
tricia keegan
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Unhappy Even more sad news

I posted earlier in the week about my friend Darra passing suddenly from liver mets. Today I was told Carol H passed yesterday very peacefully, she simply took a nap and did'nt wake up.
Carol had a long painful struggle the past couple of years with cancer since she moved her family here to Ireland from Scotland,I met her here on the her2 site when she asked for help and info on treatments available.
I was lucky to have met her a few times since then,the last time about two months ago when she was in the hospital. She knew then time was running out for her but never gave up fighting. Her husband told me she was happy to go knowing she had achieved her wish, to have her young children settled here with family support before she died.
Carol was the strongest and bravest person I've ever met and I'll miss her.
This is the link to her own story for anyone who would like to read about her, her fighting spirit shows in every word.
http://her2support.org/vbulletin/showthread.php?t=23076
Thank you for all the support and information I received from everyone here which I was able to pass on to Carol, I know she loved you all and hated being away from the site herself when she was too ill to type.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-03-2008, 07:46 AM   #2
kcherub
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I simply HATE this week.
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 05-03-2008, 07:48 AM   #3
tricia keegan
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Me too Krista, can't remember a sadder one
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-03-2008, 08:11 AM   #4
Believe51
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Unhappy Tricia

I agree this has been a very hard week, the news has kept me almost silent as I pray for our Sisters in need. I also pray for all of us whom are left here to pick up the pieces and go on in our own struggles.

Tricia, I am so sorry for you as your weeks have been so hard also. You have had a tough year yourself as you keep us posted on our Warriors. You have suffered such losses and I keep you in special prayers, you are one of my Angels yourself.

I remember Carol and her wishes and am so happy to know that she felt comforted achieving them before she went. Right now I am praying for peace and comfort for all those she left behind.

Another Angel looking over us>>Believe51
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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 05-03-2008, 08:23 AM   #5
tricia keegan
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Marie

Thank you, I know you were very kind to Carol and even offering to send Tykerb to her when she could'nt get it quickly enough here. She remarked what a generous and thoughtful person you must be to extend such generosity to someone you had never met. Thank you, and I know Carol will be saying a special prayer for you too. She lived about an hours drive from us and we'll be attending her funeral on Monday. I just feel so sad for her children who I know adored her. Such sad times this disease brings.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-03-2008, 09:29 AM   #6
Sheila
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Tricia
Thank you so much for posting about Carol...I went back and read her post you linked us to...seems like only yesterday she was moving to Ireland to be close to family...as I read down the post, I realized Shell and LuAnn who posted to her are also gone....we miss them all and this is so painful...but I know they are angels praying for us now, that a cure will come and end this loss of loved ones....please give her family my deepest sympathy....I am saddened. You remember to be strong Tricia...you have lost alot this week.
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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 05-03-2008, 10:01 AM   #7
caya
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What an awful week on the boards. And another young mother with young children are now going to be without their Mom.

Tricia, thank you for posting this news about Carol. It has been a tough week for you between your friend Darra and now Carol.

all the best
caya
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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
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Old 05-03-2008, 11:18 AM   #8
PinkGirl
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Unhappy

Tricia,
Thank you for letting us know. Carol H was such a strong
and determined woman. I know that she fought her hardest
to beat this crappy disease. I am so sorry that you have lost
two friends in such a short time.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 05-03-2008, 11:44 AM   #9
DonnaD
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Tricia,
Thank you for keeping us informed, as sad as the news is. My heart is breaking for Carol H's family. Losing two friends has got to be so hard for you. I am sure both were blessed to have you as a friend.

Let us all continue to pray for Darra and Carol's families as well peace, comfort and healing for Michelle H and Kate. We are a family and when one suffers we all suffer.
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Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 05-03-2008, 12:23 PM   #10
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"The cruelest month"

“April is the cruellest month of the year,” said T.S. Eliot at the beginning of “The Wasteland,” a poem describing our culture in the early 20<SUP>th</SUP> century. The first week of May seems to be equally cruel to us on the Her-2 Board.

My husband is a computer illiterate. So just in case I 'disappear' without notice one of these days, I want to say right here, right now, how I love y'all. After having evaded 'death' several times, I have long had the attitude that I am ready to go whenever God is ready to take me. But before then, I will try my best to survive, as it is about as good a witness as anything else I've done in my life.

And what joy to have company like you all to be on this journey together!
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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

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Old 05-03-2008, 12:44 PM   #11
swimangel72
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I am moved to tears by reading all this - the loss of such wonderful women - my heart is broken, and yet Jackie I smile reading the very words that were just in my own mind, "April is the cruellest month". You are so right - about being a "witness".....the way I hope I'm God's instrument, in some small way - to help others suffering more than I can possibly understand.
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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 05-03-2008, 02:05 PM   #12
Mary Jo
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Hi Tricia,

HUGE HUGS my friend. I'm so sorry for the week you've had.

Thank you for sharing that link with us. I went back and read it and was very moved. She sounded like a wonderful woman.

May God comfort you as you carry on..............

Mary Jo
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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

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Old 05-03-2008, 03:01 PM   #13
tricia keegan
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Friends, despite the sadness I feel at the loss of two good friends I'm comforted to be able to come here and share with those who understand and care so much. Thank you does'nt sound much but I really am thankful to each and every one of you who replied.
Monday will be difficult at Carols funeral, meeting her husband and watching her childrens sadness but I'm so glad I had the chance to help her and get to know her. Dying did'nt bother her and in some ways she was ready and tired of fighting but her biggest worry was leaving her children. Thankfully she was spared long enough to settle them here with family, she even encouraged them to stay with her sister in law at times to build up the relationship she knew would be so important when she left them. This really is a crappy disease and there are just no words to describe it's cruelty.
My prayers and thanks to everyone.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-03-2008, 05:08 PM   #14
Bill
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Tricia, I'm sorry to hear of your/our loss. Thanks for posting the link. She was an amazing woman, full of spirit. You and the families will be in my prayers.
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Old 05-03-2008, 05:26 PM   #15
Mary Anne in TX
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Tricia, you've had to bring us very sad news twice this week. My heart breaks for you, for the families and also for our Her2 family. I remember reading Carols notes about moving and finding the right place for her children. What courage and love. God bless all. ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 05-03-2008, 05:38 PM   #16
sassy
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Tricia,

Thank you for letting us know about Carol. I well remember her efforts to move and have her children well taken care of. She was such a strong, giving, loving person. I stand in awe at her courage.

Please know my thoughts and prayers are with Darra and Carol's families and with you during this difficult time.
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 05-03-2008, 05:38 PM   #17
Soccermom
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Dear Tricia,
I too feel the profound sadness that must be in your heart right now. Losing two friends to this beast..so so sad. You are such a good and kind friend and we are blessed to have you among us. My prayers are with you and the families of these two warriors.
This week has indeed been cruel to many...
Gentle hugs across the miles,
Marcia
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Old 05-03-2008, 07:17 PM   #18
Chelee
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I am so sorry to hear about Carol. I am at a loss for words. This month on this board has taken a toll on me. So much bad news and it just breaks my heart. I will keep Carol's family in my thoughts and prayers.

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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Old 05-03-2008, 07:28 PM   #19
Becky
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Dear Tricia

This is the first post I make on all our sad news. I have not even had the will to cheer Kate on although of course I do.

I need to write to you and make sure you know I am thinking about you. What a difficult week for you. It's strange because it was a hard week for me - for those on the board and just general life (was hard for me this week). It is nature's will how things will go for each of us. Who knows why one does well and another does not do well. Don't dwell on this aspect of fate. Only God knows what our outcome is. We can just try to do what we think is right (with lifestyle changes and what not). Even that is not a guarantee to what we should do or not do.

The only right thing is to be there for each other, no matter what! One foot in front of the other every day and when you can't, we will do it for you.

No matter how bad my week was (work wise etc) it can never compare to losing 2 friends within days of each other. They are asking God to protect you and are watching over you now. Keep the faith Tricia. Hold onto it because it will serve you well your whole long life.
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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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Old 05-03-2008, 08:25 PM   #20
Gerri
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Tricia,

This is all so sad. My thoughts are with you and the families.

All my best,
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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